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. To

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So,

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You the time so I You get started at this. Seasonal at the first Yes. I catch the camera.

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Thank you. Thank you very much. So for starting does the presentation. So for starting does the presentation hijack to express our.

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So for starting does the presentation hijack to express our encouragement to country. On behalf of everyone, David, I pay respect to the spirit of a country here in our where we are meeting.

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I acknowledge the past and present correlation or endeavor for forum as the souvenir

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The swearing people here. The culture, nourish, hoarders who meeting and promoted a narrow operation role custom and Costored in nature, sip, responsibility for country and the people in such country continue to sustain generation after generation.

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Into the future for all of us. I recognize the important contribution First Nations thinkers have made to society, including challenge to our dominant way to thinking.

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Without all fascination delegate in the room today for their contribution to nourish interdiscipline.

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Thank you very much. And I acknowledged I would like to express my our ignorance to the Mr. To to Bryant this session.

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Thank you very much. So today we have our first presenters. This is a Seashore. Or the patient participation and the transformation of society.

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The first presenter is Professor Eisa Rosi from University of Moderna and ratio amelia ittery.

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She is participating. A with from the zoom conference system.

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Hi. Good afternoon. Good afternoon. All from Italy.

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That's okay.

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No. Okay.

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Just 1 1 s, Alisa.

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Okay. Okay.

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Okay, you can share your screen now.

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I can share. Okay. Thank you, Tim.

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Down. And, oops.

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Okay. Can you see it? Okay, thank you.

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Yes we can.

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My presentation, for today is about patience participation in medical consultation. My, presentation is about, research project.

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II was involved in in the last 2 years. Dr. Patient communication in oncology analyzing practices.

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And their effectiveness. It was a pile of study with a sociological and linguistic approach.

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Finance by my university, university of Moderna. Which took place in the last 2 years object of the study where the doctor patient interactions in the oncology field.

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Method used. We have done an analysis. Of naturally occurred consultations. So visit medical consultation.

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Which were video recorded after formed consent to all given to all participants. And then transcribed using conversation analysis conventions.

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This, research project. Was conducted at a local level in my region. Where the University of Modern Area is, located.

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Within 5 earth structures that deal with oncology. Surgery and radiology care.

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The corpus of Data, we video recorded, includes about 84 consultations. Divided in first visits or also follow up visits.

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Participants were, 25 doctors. 46 patients. 25 companions.

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And 4 nurses.

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The main objectives of this pilot study of this research project local research project.

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First forms of communication, what I mean with forms of communication. The main name was to identify the forms of communication created by doctors during the consultation phases.

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That is to say during the opening of the visit, history taking, yak noses, prognosis and treatment recommendation.

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Especially I was particularly interested In, those forms, which were more patient centered. In other words, more oriented to patient active participation.

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And their personal expressions. In order to improve their care and life.

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In this, against this backdrop. The my attention I put My attention especially on what I call dialogic facilitation.

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Sanitation is kind of medical dialogue. Through facilitation. This kind of form of communication is at the opposite of monologue.

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And a more doctor centered approach. Which is based on in personal roles and on an asymmetry in a epistemic authority.

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In the management of the Pistonic Authority.

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In fact, as a matter of fact, doctor center approach. Is based on a monologue.

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What is a monologue? Monologue is a form of communication, particular form of communication. That control patient participation and where listening is not relevant.

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Monologic actions, for instance, can be considered closed questions. Yes, no or or. But also, by the doctor, explanations, instructions, directives and the evaluation of patients expressions, contributions.

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During the medical consultation.

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Instead a patient centered approach. Is based on the sharing of clear medical information and a shared decision making on treatment.

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In particular. Medical dialogue can be considered a form of communication. Which is fashion standards. In my according to my approach, facilitation and in particular dialogic facilitation.

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Can be the empirical, realization of this medical dialogue. Promotion facilitation is aimed at promoting patient practition and their agency.

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Through active listening by doctors. The main dialogic actions are open questions, closed questions, but to go deeper in the perspective of the patient.

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Ecos, so, repetition of what the patient said. Minimal feedback of of understanding and also continuous.

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Okay. Appreciations for formulation of the gist of what the patient said previously. Personal expression and also narratives.

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Produced in displayed by doctors themselves.

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Kind of, forms of patient participation and agency can be elicited. By doctor by a loss of facilitation.

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For instance, questions. All point notes, ideas and proposals. By the patient. Feelings, emotion and emotional talk.

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But also resistant opposition for instance to a particular. The surgical intervention or medical treatment.

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Concerns, needs, but also reports speech. They told me that. Hmm. Information and last but not least personal narratives.

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So the patient. Can tell. Can touch something. Of the of their life.

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In fact, as a matter of fact, according to my approach, approach that I use. Naratives can be, considered as stories or descriptions.

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That, first of all, Construct reality. They give meaning to our personal experiences. For example, our experiences about the disease, about the surgical intervention.

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It's center. Secondly, narratives can be stories or descriptions that construct identity. In other words, they give meaning to who we are.

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Our life and our actions. As active agents. Not merely in this specific case of medical consultation as patients.

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Ill and in need of care. So agents.

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We also know that, there is an approach, a new, new, relative new approach or a narrative based magazine.

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Which is focused on patient narratives on disease. Through an empathic approach to our personal stories in order to improve diagnosis and care effectiveness.

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So stories also in this narrative make Madison are Really significant to understand patient health conditions. And also to evaluate the quality of care.

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According to my approach, narratives are cool constructed in interactions and are dynamic My study is based on the analysis of interactions.

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So I consider narrative as a code construction. So they can change over time. They are influenced by the context.

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For example, in our specific case, the medical system. And also they are influenced by the forms of communication.

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For instance, created by the doctors during consultations.

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As a matter of fact, doctor actions can invite Hello, so encourage but also discourage patient narratives.

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According to the literature, I, consulted, the, monologue among a logic, form of communication.

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Discourage time to discourage patients participation and especially narrative patience narrative.

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On the opposite on the contrary through active listening, solicitations and feedback. Doctors are cool authors of the structure of patients narrative.

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So Dr. Become a co-tailer. Cool author of this construction of a narrative.

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Questions and information requests. Used by doctors in fact can elicit. Simulate narratives.

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Doctors can invite and faculate narratives. By using dialogic actions. And a patient centered approach.

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In this case, this is my approach. What I call dialogic facilitation. Now, preliminary results of this of my, research project.

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Diological facilitation, in my corpus of data is the prevalent form of communication used by doctors.

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I, we, video recorded. Okay. But my attention was put in particular on personal narratives on narratives constructed in the interaction.

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I, I observed that dialogic facilitation promoted patient narratives. And so, constructed.

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The cocoa structure stories on. First of all, the discovery of the problem. When and how I discovered my disease.

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Secondly, narratives on patient identity. Thirdly, narratives. Their emotions.

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As a fourthly, a possible cast of familiarity. In my, example, now I'm, to my, this 2 example, 3 examples on the first 2 kind of narrative.

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You have to another to me.

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Here we have. The problem discovery. Here we have the program.

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Discover. Now everything on the program is coming. This is an extract. Of the video recorded medical consultation.

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Hmm? We followed for the first time, conversation analysis, convention.

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Doctor at the beginning in the opening. So you can see so the did this problem. This is gonna begin with, so the doctor in the opening, produced, displayed, yes, no question.

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But it is a question closed, but to go deeper. To, to go deeper in the patient.

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History of this disease. At that point the patient tells his initial symptoms to the doctor and also is the first I thought it was my neck because I've always suffered from like pain and back pain but after having the court is on injection.

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Etc. Then I specifies something, 9 injections. So makes a sort of repair of what her husband said.

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Theylicited by the At that point the doctor gives a feedback. And the formulation. So also a little balance.

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In this way, through this, these dialogic action, feedback and formulation, the doctor is displaying active listening, interested listening to the patient.

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Then the patient begins, in fact, a narrative expansion on first investigations about the problem. Perfect. So I went to my GP, my GP says, I kind of do anything about it.

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I'm sorry time is up.

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I send you to the emergency department, etc. Etc. At the point also that Yeah. Okay.

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Okay, okay, I run. Wife as information by yourself. And then the doctor formulation, the doctor makes a formulation that adds an information.

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This is a a couple of narrative about the problem discovery. Just really. This one, a narrative about the patient's identity.

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The doctor begins with open questions in the opening and but also yes, no question to go deeper. So how did you know this?

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To the screening, the patient look at at this point construct herself as active agents. And attentive to prevention.

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The doctor at that point, I understand, gives a feedback of understanding. Also in, soon, after and during the history taking the patient.

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She defines herself again as active agents, sporting and attempted to earth. And the doctor confirms this narrative.

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Yeah. Please make I'm really sorry.

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By the patient. Okay. Your Okay, these are, you, you can find some references.

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My, here, yeah, you can find some references. Is that exactly? So we can say in conclusion that, biologic facilitation can be likely.

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Mmm, probably more effective in eliciting and simulating patient participation during during medical consultation. Thank you.

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Thank you very much. So, so I just joined as the next presenter. It is the Do we Han from China.

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Please come to the stage.

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Thank you very much. Thank you, Professor Hosota for introducing me and thank you for the opportunity for me to be here for introducing me and thank you for the opportunity for me to be here and my name is John Wei Hong, me and thank you for the opportunity for me to be here.

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And my name is John Wei Hong, a PhD student from the Jessica School of Public Health and Primary Care.

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In the Chinese University of Hong Kong. Today I want to introduce about patient organizations specifically on rare dishes in China.

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In title characteristics of fair dissation organizations in China and organizational factors associated with fundraising amounts across sessional study.

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Here on my content and here comes the background. I talked a little bit about the red this is in China and rare diseases refer to the diseases with very well prevalence while there is no common definition on rare diseases the majority of countries in the world have adopted the prevalence third or between 40 to 50 cases per 100,000 people

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in China there is also no efficient definition of where this is so far but it is estimate to have 20 million people with where this is based on the prevalence of less than one in 500,000 people on your NATO mobility of less than one in 10,000 people.

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Red basis patients in China are confronting with medical barriers such as diagnosis, difficulties. Treatment disease, lack of effective treatments will availability of drugs and difficulties in being cute.

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Since most reduses are not curable, so lack of knowledge on rare decisions lead to marginalization in health care, social and health policy.

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In response to these hubs, rare diseases patients and their families have begun to establish a variety of rare dissipation organizations and there have been more than 100 established and I will abbreviate such organization as RTPOs and there are been such organization as RTPOs and there are more than 100 established

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RDPOs and there are more than 100 established RDPOs in China and there are more than 100 established RDPOs in China and they regularly hold activities such as distributing educational materials and raising where this is around this.

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And these organizations also allow patients to share information, provide mutual help and organize activities to overcome the medical and social gift tool tests faced by this relative suspicious.

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While internationally, rare diseases are one of the fields that patient organizations have traditionally focused on. While there is also no common definition of patient organization, the European Medicines Agency defined a patient organizations as not-for-profit organizations which are patient-focused and thereby patients are there carers represent a majority of members

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in governing bodies. Since the passage of the Oven John Act and the establishment of the National Organization for Rare Disorders in 1,900 eighty's in the U.S.A. the number of rare diseases patient organizations have been increasing in internationally.

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Their functions are varies from policy advocacy capacity building and education peer support to research and development on pharmaceutical companies.

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When performing these functions they are confronted with both internal challenges and external changes while internal changes include lack of performance measurement or hard to perform performance measurement or lack of organizational professionalism.

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While external challenges may include lack of resources and funding.

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All these internal and internal changes might hinder the patient organizations to achieve their whole potential and deliver the maximum value to the help of patients with rare diseases.

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At the current time, there is little research focusing on RDPOs from the organizational perspective in China and it is difficult for them to spot the challenges of our GPO, improve the structure and enhance the health of rare business patients with help of RDPs.

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So in this study, through a survey of the key persons in each RDPOs, the study aims to examine characteristics of RTPOs in China, stuff characteristics and underlying changes.

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And this study also aims to identify funding sources and factors for successful fundraising. And here comes the Matter session and this is a cross-sectional study in 2,019 a large-scale quadrant questionnaire based on the I survey of the key person of stuff in each RDPO was conducted.

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For example, they are a founder or manager executive of each organization and they were asked to report the information in 2,018.

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The study was initiated by the Chinese Alliance for Rare Dises and conducted by Unice Change Foundation, the Chunky Kuffs School or Public Health and Primary Care from the Chinese University of Hong Kong and Department of Sociology of Qin Guan University.

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A convenient sample method was adopted and RTPOs were assessed through the database established by the units changing foundation and this is the biggest umbrella patient organization for where this is in China.

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The survey was advertised the year online and offline performance such as online and offline conferences and meetings and distributed among different The questions near many include 3 parts, organizational characteristics, stopping information and fundraising information.

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And in order to examine the influencing factor of fundraising amount, an autonomous GT regression analysis was performed.

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In which independent variables include whether they are located in Beijing, the capital of China, and media exposure professionalization.

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And the dependent dependent variable is the fundraising amount.

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Here comes the resale session. And a total of 73 rare dishes patient organizations were included in this study and most of them focused on single rare doses.

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A while 20% of them are focused on multiple rare diseases. We found that most of them are almost 60% of them have not been officially registered under the Chinese government and more than half of them were located in Beijing.

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23 of the of these organizations can reach out rare diseases patients with more than 1,000 people while almost more than half of them can only reach out rarely dissipations of less than 500 people.

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For the stuff characteristics around 80% a 70% to 80% of them had the patient or their families working as stuff in each organization.

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And when asked about what's the main workforce of each organization, less than 40% of them can hire full-time stuff and less than 30% of their higher part-time pay stuff.

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Notably, the volunteers in in this study completed the work of more than 80% of the completed work of 80% of the organizations And what and us about the self self-rated salary income they were reported to be the bottom line of the local salary income among the full-time pay stuff.

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And for the number of associates for the number of stuff associated with educational level and half of them had a bachelor's degree or bachelor's degree or above.

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And around 70% of them were less than 40 years old, which means they are relative young.

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For the fundraising condition a great majority of them were reported to not have stable funding sources. While around us 40% of them I did not manage to raise any funds in the last of a year, 2,018.

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And the average fundraising amount were reported to above 22,000 US dollar in 2,018.

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The major funding sources of RTPOs many came from internal members donation enterprise donation and private donation and for the multivariate analysis.

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The professionalization and media exposure were 63 associate with more fundraising amount while located in Beijing is not as executive confer.

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Here I briefly discuss about some interesting findings of this study and this is the first study quantitatively examined the profile of where this is patient organization in China and this can serve as a data driven baseline for further discussion between patient and other stakeholders.

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More than 30% of audit bills register in the civil a fair Department of Chinese government. This indicates that radius is patient organization in China where to embark on the progress of regularization.

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And institutional development. Which means that they can start to hire for time pay stuff and standardizing the operation and management but the proportion is due relative flow compared with other countries.

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And more than half of the survey, RTPOs registered in Beijing, the capital of China.

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This is mainly because policy advocacy was one of the main roles of RDPOs in China and registry in Beijing can make them more accessible to raven political and media resources.

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But at the same time, this may hinder the accessibility of rare dissipations to this patient group resources since these patients are decentralized across the whole country while the resources related to patient group are decent are centralized in the capital.

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For the staffing of RTPOs more than 70% of RTPOs were comprised of where this is related patients of their family members.

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This is a typical characteristics of patient organization. This is because they usually have stronger motivation and desire to improve their treatment and living conditions.

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But also RTPOs routine operation and management may be affected by the health status of the patients, the stuff and this can impose the negative impact on the inventiveness of their daily activities.

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And also the number of volunteers was much greater than those of full-time pay or part-time pay stuff.

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This in this case that volunteers was still the main forex of the RDPOs. And we believe the financial constraints and lack of relevant resources hinder the employment of past stuff.

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For the fundraising more than 80% of other peoples did not have stable funding sources on routine basis.

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This may lead to many consequences. Firstly, this can lead to hardship to organize off-guardship to organize off-guard activities and could only switch to online community contact.

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And lead to inability to employ more full-time pay stuff and also this can limit attending external funding sources, support for the government and attention from the public.

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And most of the funding source of RTPO still depending on internal members donation and this suggests a vicious as spiral of financial hardship that is organized and participating in these activities is likely to make patients and their families with existing high economic burden even more impoverished.

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For the influencing factor of the for the influencing factor of the fundraising. We believe the profession in this study professionalization is a combined variable examine where whether there is an executive manager full-time pay stuff year report and for a performance evaluation of projects and activities.

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For the performance evaluation. Some researchers now believe that it is hard to identify and quantify the accepting path of this project on the final outcome because the evidence of the mesh is all week is often weak and at the endodotal.

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In this study, we believe in enhancing the expertise of organization and improving strategies to expand media exposure may have to attract more external funding sources.

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Finally, this is the limitation of the study. Okay. Okay, that's all my presentation.

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Thank you very much.

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Thank you very much. Very nice. Just happy. So the third presenter are Jack to introduce Professor Claudia Ariaga.

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So, hi.

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Hello? Hello.

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Hello.

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Okay, Claudia, you can share your screen now.

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Thank you very much. Please share your screen. Thank you.

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Thank you.

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You have 50 please.

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Good afternoon. My name is Chloe A, nurse, midwife and academic and the school of nursing of the I will like to present the progress of my thesis of the DFR program in sociology of the on your CL.

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The project proposed to MBGA to care not for the for people with chronic disease. In the primary care center of the National Health System.

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The project decreases the very concept of the state medical care and broadens in conceptually in terms of the component includes adding people, technology, space, animals, instruction, and the other elements they act.

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In the care network. They are element that is some way or articulate in changing waste over time. Give us no answer.

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I'm variant in a care that's close to the network.

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Ronnie and Non-connikable diseases are long lasting disease for which the core has been identified.

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It is the proportionate effect on port and disadvantage population exacerbates health inequalities.

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Between and within countries. Very and might that pneumoniaable diseases are preventable and they are diagnosis and effective at treatment.

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The number and of parameter deeds can be considerably produced. It is possible to make an approach to hold the organization of care for people with chronic non-communicable disease.

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Can be reflected in every day life. Life through the following story. Octaviano is 60 years old.

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25 years ago, he has diagnosed with He said that taking care of him has not been complex and he has had great family support.

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They came medication for him. He's incorporates into his Easter life and he managed He very ordinarily through his pill box.

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He has made change to his diet. Learn it to read the desert results and even record. Is Kabira, is a notebook at home when he has their active street for his monitoring device.

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He has a regular check, apps. The primary care is If this concert, sorry, is located beyond the limits and evidence moving.

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This possible then distinguish new actor, visit visible add-on. With the evidence left by their relationship bridges between the most a recognized actor and the least recognized one.

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This now actor Cole increase the understanding of care deep in the concept making and movements more complex and understanding the present.

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Of sure. Er, car models. And why of looking at the origin of care mobile is as responses to the classic approach for the sofas.

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A determinant for health. The car mobile is a description of the optimal waste of the organized a shell action.

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In order to satisfy the demands of the community and the sector size. But it can also be defined as to set of criteria or doctrinal or an ideological foundation of which heel system are based.

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The public health care system in Chile in this organization as implemented primary health care as an access and the coverage strategy.

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And in its organization of the style it has His son is selected. The comprehensive health care model mice.

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This model understand that healthcare must be a comprehensive and continuous process. That focus in adding attention on people and their families.

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That's very nice activity of health promotion. This is prevention and is a concern with a shell needs of people and communities.

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Even the them tools for self there. Yeah, show communication technology. The technology use it in childcare in half current needs and have come the the timelines and the precision of the diagnosis.

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Hi, and follow up of people with chronic disease. Some of the example in incorporating technology into care.

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The electronic prescription. In Tell him anything and telecare. It is necessary to either that there is a gap between the population groups and can access this technology technology the texture that not do not have access to basic infrastructure which prevents for adopting technologies.

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Technology also fasciated the organization of units with the structure and health service. The international company the internal communication.

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And the flow the shell decision between levels of lesser complexity and greater complicity. This actor actin human and non-human point of connection in the care network.

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Are active in some way in this transmission of care. Influencing the care itself during their regular care. Provided by the system, the public system of as the hell underside and the people with

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The general methodological, the singing is the buses of the central concept and component of the actor network.

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Sorry. From the perspective of Bruno Latour and Marimo. Cann network as our concept not as a structure a tool to report to the assembly of care No more that describe the series of action in which is participants and treats as a major and proposed the action of all the actor making the social movement visible.

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In this way, the social plan was, again, beyond not a static entity. This is Chris, the description of the network.

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It's set to observe the effect of the actor as majors and obtain and understand. Of the in next month.

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Of the care of people with chronic illness.

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Then. Configure the current for an identity, the association between the actors. The Matt and Pure was used with the intention of keeping all the association at the same visual label.

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In this map, the topography is diagram in the different association and now will be about another. In this way, it is possible to trace the action in the of the agencies locally.

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Is different places and this is possible to have a vision of the act and an actor with all the agency that they can bech.

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I want to share 2 issues that they have cut my attention in this test is. One, the electronic clinical record as an acton.

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And connector. This technology supports not only the clinical history of the person's disease. But also constitute support for the daily activities of health center professional.

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And the source of information necessary for data consolidation at the central level. In this process, the clinical driver is losing its roots in roots in the person.

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It is also Loosen is richness. S only a minimal proportion of all the register information. I believe Elys is distracted.

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Generally they are the numbers associated with rules or local regional or national health organization. Cool. The invisibility of the new requirements of the population.

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Of the health system. In an effort to a standard in standard based The health car, the people with chronic health condition.

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The system as credits a specific program that operationality translates into protocols and white light. That must be a play to ensure the quality of the action.

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If people don't find a response to their needs. It is possible the observer the emergence of social organization with the IIMs underraising their problem.

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The problems are fair for managing their solution.

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This is study. It's what's possible to identify some on the new condition. Surveyors of cancer process and woman who require abdominal last year's stare weight loss.

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This and other situation are outside of Hill system that as very clean and definite and entrance doors and internal channels for the provision and the healthcare.

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I hope that in investigation like this contribute to a critical analysis. Of the internal process of the health system.

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I price it your attention and the opportunity to present them in at this event. Thank you so much.

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Thank you very much. So now we are coming to our last presenter. Please come to the stage, Eleanor or Kazaz.

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Thank you.

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Thank you very much and thank you for having us here and my I apologize for the absence of myculea Narokoko, the neurologist that she was doing the presentation with me, she was doing the presentation with me, she's not, she cannot be here because of health problems.

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And so I am doing the presentation on behalf of her too. So this presentation is about an approaching the multiple sclerosis integrating the expert systems and the narrative medicine.

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So since 5 years we started a cooperation with social science and the multiple sclerosis regional unit which is a very important one because Sardinia has the highest percentage in Europe.

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Of concentration of multiple sclerosis. Which he became an international case study. And we are involved now on a new project about pregnancy and multiple sclerosis with the Italian National Service Forum sclerosis and this that unity of calorie the unit of Turin and the unit of Rome so we are going to monitor the women that

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they decide to become mothers with multiple sclerosis. So my presentation, it's about a general introduction shortly about what is multiple sclerosis and how narrative medicine can support and understand the dialogue between passions and magazines.

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Doctors. So multi-plus clerosis is an a disease that is involving usually a normal immune system.

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It's a response because the millennization in the central nervous system. It's an improving and development.

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The illness as I said before women they developed this illness 3 times more than men so in the Italian, the national companies that used to say multi-pluserosis is women.

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And so the diet uses it requires a deep individual investigation to understand the varieties of symptoms. So symptoms are not the same for every passion.

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So it needs to sometimes to get a diagnose it takes something like a year. So it's a long, long process.

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And so a bit especially he appears at the beginning of the youth at the employment age. So we must look also.

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The impacts of multiple sclerosis on the life of people and the ability to meet all the job expeditions society they put on them.

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So the other issue from the sociological point of view is the progressive impairments and the stigma associate with the impairment passing experiment in their life.

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So why sociology became so important in understanding this illness and cooperate with the medical doctors. So I think that the pioneer work of Corbyn and Strauss on inland biographical impacts it's truly important for 2 main issues first because they talk about biographical and biological chain.

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So this it means that there is a basic, you know, physical changing in the bodies but there is also something related to it.

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So because illness is a longer term event, the biomedical dimension overlaps with the complexities of these social interactions.

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So that's why they centred the study on passions and the management of the chronic illness.

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What they used to say, the chronic illness that they pass in there in a site of complex relations, the relations with passions and family, the relation with passions and medical stuff, the relation with the organization.

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So the issue of identity is truly important. That's why they talk about biological body conception chain.

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So there is a biological time but there is a self-consumption and it is also a body consumption which is involving this complex management.

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So the order, important topic is the observation that my good beauty made it 20 years ago about the illness disruption.

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Made it 20 years ago about the illness disruption. If this is truly important in the definition of identity of chronicle illness because it's signs the before and after.

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This before and after is imparting in the trajectory, which sometimes, even doctors that impact for the first time in their life with the illness, then they understand the discourse of beauty.

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It's all for for us as a sociologist to explain that how important is in person's life the disruption of illness and when they experience themselves then they understand the true importance on this.

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So this deep disruption in gender a kind of mobilization and elevate level of resources, personal resources, family resources.

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Organisation illness. So this is a long impact on life which comes from the shock. To discover the illness.

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To the grief. So it's a long management which takes a different approach. Now I'm quoting some quotations from the interviews that we did.

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So Antonio, that we did. So Antonio, which is 35 years, that we did.

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So Antonio, which is 35 years, or we did. So Antonio, which is 35 years, that we did.

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So Antonio, which is 35 years, or say multiple sclerosis is very bad, is unpredictable.

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I will say multiple sclerosis is very bad, is unpredictable. But it's up to us to make her understand who is in change.

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It's very bad. It's unpredictable. But it's up to us to make her understand who is in change.

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So it's up to us to make her understand who is in change. So it's interesting because patients with multiple sclerosis, to make her understand who is in change.

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So it's interesting because patients with multiple sclerosis in change. So it's interesting because patients with multiple sclerosis, they told the illness as something that is a life, it's Maria, which is 23 years old, say I've got pain pins and natures in my leg.

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The journey began in August sixteenth the end of December of sixteenth. With 4 words. Relaxing, remitting, multiple sclerosis.

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And Funny, 25 years old, say emptiness, fear, confusion, anger, disbelief.

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All these are the emotions and the confusing emotion and the management of this emotion is quite complicated. As I was saying before, getting into job it's a hard time for that to manage it.

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This is a quotation from Maria. This is a quotation from Maria which is a manager.

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Initial store I say I enjoy working as a says woman in a show store but I have trouble remembering what the customers are asking for.

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If I got to get a pair of shoes from the warehouse when I get there I have already forgotten the color or the size I ask if I could write myself and not by they say it doesn't make a good impression even at home I'm always looking for something my cell phone my keys I haven't been able to find

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the money from my mom's birthday present since I put in a safe place. So this is the complications that a person affected with multiple sclerosis.

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Have ever in their daily life. So people have to reconfigure their biological cycle and the future life.

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For example, at the age of 27, due to therapies made up at the moment, the doctor told me that unfortunately I would no longer be able to have children.

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My body led me in an early monopoly. The early collapse, Anna said, on me, but I didn't stop.

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I knocked the door of their all assisted reproduction center until I found people and doctors who exposed my cause.

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And she was able to have a baby. Of course, with many, many complications that I cannot tell you now because of the time.

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So, people with chronic illness, they learn the chronicity. A learned acronicity is a complicated pathway.

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So first they discover the impacts on everyday life. The first one for Multi-pascerosis of course is the loss of functionality.

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The limits that discovers are also the incentives because you don't know when the pain comes and what effects this pain give to you.

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So at they recognize that there is time is became really important in the life not because of the life before and after the illness also because of the lapses of the relapses of the illness.

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And then that is the loss of social life, the social role. This is it's very important for men because men identity is truly related to work and when they are enabled to do their normal job, this is it's very impacting on them.

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And they there is the discouragement that it comes. They say, why, why it happens to me, not to somebody else, why?

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So they had no residents, they have no solutions. And so then that is the kind that can hide impairments and there is a self-isolation and also It's very important, this in family relations, what Kathy Charmatz said in his inner work about fibromiga, say, but the chronic

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pastent they became the audience of the family. Because they don't do what they usually they expect to do or are they not they have no compliance with the therapy and so on so forth so became audience it's quite a great difference And then it comes another important change.

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This is the biographical time. As I said before, life was before and after chronicity. But this is affect disruption.

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Ketty Adams are talking about time used to say that this disruption is similar to the reversible direction of the aging biological clock.

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So biology says something and my body is not exactly where you used to be at the age of 30 or the age of 4.

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This is introduction and another biographical temporal perspective. So people with Kernacity live in a different chronicity and the aspiration of normalcy for them is you know the communication compliance because the compliance help them to to face-to-face the everyday situation.

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And of course the social recognition and the alteration on this status and rules associated to the stigma. So, and I am coming to my conclusion, why narrative medicine is so important, especially in general for patients, but especially for people affected with chronicle disease.

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First role because we introduced in in 99 7 well no article said that it is an important difference which is well no article said that it is an important difference which is the difference between illness and disease.

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The distinction is related to the difference, which is the difference between illness and disease. The distinction is related to the full biographical restitution of experiments or chronic illness. Through the narrative method.

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So the narrative telling the story of the chronicity. He helps the chronic people to reconstruct the idea, their identity.

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So narrative it is important because it is a way to restore the process of reconstruction, a recomposition of this biological body chain that Strauss was for cells was so important on on Chrony City.

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And this is it's important in the recognition when we are now trying to experiment. In a narrative record, which is very complicated because the organisation or art service doesn't help you because a narrative record means the use of time in different time in medical organization which it's very important resources.

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But it's important because especially in multiple sclerosis where the diagnosis is complicated and the adaptation and the full medication is a kind of personalized medicine.

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Patience narrative it's truly important because it's narrative it's truly important because it's not only a matter of it's truly important because it's not only a matter of compliance it's a matter of understanding which drug function better than the other one.

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But also the narrative medicine from the point of view of Gary Baker which has studied the disruption in a chronic illness is say he helps to restore the order.

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The life order, it's important. So I can put pieces of my life in a kind of box at the connection of this box.

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So narrative helped me to understand which box I should I put things? So that's why the subjective experience of the disease and treatment on narratives a became real what Strauss and Corbyn say, the social world of the chronic acronicity.

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Thank you.

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Thank you very much. Is it? So I directly as all presenters to come up to the front desk.

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And do you like to start the discussion? Yes, please. And also, the participant from the to online the Elisa and in the cardiac.

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Screen. I thank you very much. So, so first, so, yeah.

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Thank you very much for your wonderful presentation. And. With there are another 4 participants in the floor.

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So before, can I ask? Broad questions. So, so traditionally in medical area, like Charcoot of Parsons and Ariot 3 just saw another rights.

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There is a huge gap between the doctor and patient and as our free design described professional dominance. And there are some, you know, the power.

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Heinar-daki and Sometimes they patient has this power and it does not have and thing to be considered as a weak and big big victim.

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But it has been changing and so I found your presentations. The relationship between the doctor and the Patient has been changing and the patient empowerment is be crazy so I just to ask and each participant.

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For what is a tendency in your country and from your observation. Thank you.

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Thank you. Yeah. Actually I focused on where, and to create our team.

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Our team focused on rare diseases for very long and we did a survey about awareness on where this is between between doctors and patients and we had a surprise founding and which is that in terms of the raretices the knowledge of patients is much greater than than those of doctors.

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So, but usually the power, the power of doctors is much greater than than the patients. This is the contradictory part between the patient and doctor relationship.

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So I think. The empowerment of patients, patient groups must be enhanced in order to improve the country trajectory between between the relationship between off between the power of doctor and pages.

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Thank you.

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Thank you very much. So, Do you have any code?

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I think that's the Well, I don't have the situation, the overall situation of Italy, but, I think that a change in the overall situation of Italy, but I think that a change in the patient doctors patients communication.

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Can be observed also in our corpus of data which are regional or local okay But in general, I can say that from our, sample of interactions of medical consultation.

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In in this sample we found out More participation by the patients And also, this kind of dialogic facilitation.

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So a sort of negotiation of and also epistemic authority negotiation. In this interaction this visits first visit and those who follow up visits.

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So we can say that probably the tendency is toward a change, an important change, toward a patient centered approach, a more dialogic approach in in this in this field hopefully because our data our data show this kind of questions questions.

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Opinions, information, also oppositions. And narratives. So It's very interesting.

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Tendency towards a change important change.

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Thank you very much. So, the crowd here. Oh, I do.

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See? Yeah, Hey, can, Emojis Tamari no, and karaoke systema Triciano.

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He Elea, If I in DK. ER, and, Elba.

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Thank you very much. Actually, I don't understand the Spaniards. So, anybody can trust.

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Oh.

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Okay.

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3D maybe, It is Oh, cool. Hey guys, Teresa or A. Thank you.

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And Italy, I mean very differentiate by regions because I mean the health system is national and system but it's finance and support by a managed by different regions.

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So not from South or their difference. But I agree that there is a tendency, general tendency on empowerment and passions and there is a more and more than passions and there is more and more sensitivities and there is more and more sensitivities for integrate base evidence medicine and narcissism more and more sensitivities for

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integrate base evidence medicine and and narcissism of course it depends on the organization of course it depends on the organization on the time I think time it's in important resources on integrate in narrative medicine because it's time consuming and or medical organization it's very strict and they have really sometimes they have no time to talk with with the passions

332
01:08:13.000 --> 01:08:32.000
but let me say for the multiple sclerosis there is a third actor which is very important. This is the association of the passions which is made in a lot of information, general information and is a balancing the relations between Tysons and medical organization.

333
01:08:32.000 --> 01:08:43.000
So they are promoting this approach to be more inclusive and because it's a kind of political actions that they are doing on the medical system.

334
01:08:43.000 --> 01:08:55.000
Thank you very much. So, so. We go back to the crowdous statement. So maybe you can translate.

335
01:08:55.000 --> 01:08:56.000
No.

336
01:08:56.000 --> 01:08:58.000
What?

337
01:08:58.000 --> 01:09:04.000
No, actually we don't understand what crowd yes is because it was a Spaniard.

338
01:09:04.000 --> 01:09:05.000
So I, during the food, somebody can't translate, but okay, it's okay.

339
01:09:05.000 --> 01:09:15.000
I didn't understand fully. That the person, the person of the patient, the person of the patient is, increasingly important.

340
01:09:15.000 --> 01:09:16.000
Are you correct? Okay. Thank you very much. Thank you.

341
01:09:16.000 --> 01:09:19.000
This is, I, Okay.

342
01:09:19.000 --> 01:09:39.000
Yeah, and also and yeah I find the you know in each country the patient empowerment is in If costi direct import to be important and under either mentioned as as you mentioned maybe

343
01:09:39.000 --> 01:09:51.000
Not every doctor, but the particular, you know, just specialization like commercial sclerosis or some particular disease.

344
01:09:51.000 --> 01:09:52.000
Hmm.

345
01:09:52.000 --> 01:10:03.000
Presenter with particular disease, they have some you know, good relationship with America. Correct. I mean, I think he, I mean, it's a kind of, you know, sometimes a kind of research serendipity.

346
01:10:03.000 --> 01:10:32.000
So we match. And we have common interest. And we develop we are developing a very good good dialogue because I think it's the nature of the disturbance because it requires and attention to the passion war I mean even cancer I mean they need the same kind of approach.

347
01:10:32.000 --> 01:10:49.000
But being starting in an early age And, managing complicated issues. For example, now they are facing the problem of affirmative gender, which is an additional complication because People is going to trench, of course.

348
01:10:49.000 --> 01:11:00.000
Their biological nature with treatments and these treatments that have to be coordinated and with the multiple sclerosis treatment.

349
01:11:00.000 --> 01:11:22.000
So this is another combination. So the support of social science modern is very important because I mean people in transition all in affirmative gender they face not only a problem of chronicity but complicate issue about identity much more than the others.

350
01:11:22.000 --> 01:11:35.000
So they require our support because they need they need. Thank you very much. So, from the, in other questions at Chris and Kathy.

351
01:11:35.000 --> 01:11:39.000
Maybe it's better to come here to be able to show your

352
01:11:39.000 --> 01:11:46.000
With the microphone, please.

353
01:11:46.000 --> 01:11:52.000
Hi everyone. Thanks for your talks. Hi, hi Lex. So to Elisa, yeah?

354
01:11:52.000 --> 01:12:02.000
I think you, so your data came from 84 video recorded consultations. So, observation, yeah.

355
01:12:02.000 --> 01:12:11.000
So I'm just curious. How you feel gathering data that way. Shaped the interactions.

356
01:12:11.000 --> 01:12:22.000
How because I guess when people know they are being recorded. You know, I just have just interested just how, yeah, you dealt with that.

357
01:12:22.000 --> 01:12:23.000
Or.

358
01:12:23.000 --> 01:12:31.000
We asked, yes. Well, this is a technique. Qualitative. Method we use also in the classrooms.

359
01:12:31.000 --> 01:12:32.000
Yes.

360
01:12:32.000 --> 01:12:42.000
So we we are our staff. Sociological and linguistic stuff. Very familiar with this kind of methodology.

361
01:12:42.000 --> 01:12:43.000
Yeah.

362
01:12:43.000 --> 01:12:50.000
In the classrooms and also. Within, hospitals, within, earth structures.

363
01:12:50.000 --> 01:12:59.000
Even if old, you're only, old recording is, more spread.

364
01:12:59.000 --> 01:13:12.000
More accepted okay but in this case in this pilot study We had a lot of, acceptance of this video recording.

365
01:13:12.000 --> 01:13:16.000
Right, yeah.

366
01:13:16.000 --> 01:13:17.000
Yep. Yep.

367
01:13:17.000 --> 01:13:23.000
We put, quite in the corner. So for the panoram, okay. And also add your or your record digital audio code on the desk.

368
01:13:23.000 --> 01:13:24.000
Right, yeah.

369
01:13:24.000 --> 01:13:35.000
But after, of course, the informed consent for all But it was really because you You, forget.

370
01:13:35.000 --> 01:13:36.000
I was bad to say you might forget that it's even there. Yeah, you're just interesting.

371
01:13:36.000 --> 01:13:51.000
The technology. Yeah, you forget during during the consultation. Then you soon.

372
01:13:51.000 --> 01:13:52.000
And then natural, yeah.

373
01:13:52.000 --> 01:13:57.000
You soon. Realize this soon. Do what you usually do. It's this is our Oh, okay.

374
01:13:57.000 --> 01:13:58.000
You're welcome.

375
01:13:58.000 --> 01:14:03.000
Okay, I was just interested, thank you, thank you. And the gentlemen, so they did the right diseases.

376
01:14:03.000 --> 01:14:19.000
And sorry if I missed that, I'm just curious, because it was quite, how many diseases and and just give a sample of what He encapsulates a rare disease in China, yeah?

377
01:14:19.000 --> 01:14:28.000
And a total extent degree and more than half then focused on single references.

378
01:14:28.000 --> 01:14:38.000
Around maybe 40 or 50 them focus on single-red businesses while the rest and the person not then focused on multiple businesses.

379
01:14:38.000 --> 01:14:48.000
They are mostly unraveled organisations, which means Which means they provide some services.

380
01:14:48.000 --> 01:14:57.000
That's not supposed to be too single. To some common. Awesome to address some common issues of differences.

381
01:14:57.000 --> 01:15:03.000
So can you give an example of what one of the rare diseases? I don't know if I'm saying it.

382
01:15:03.000 --> 01:15:19.000
Yeah, I'm just curious. Okay, yeah, it is considered. That's what I was interested. What about do you have a chronic fatigue syndrome?

383
01:15:19.000 --> 01:15:36.000
Does that? Which I was interested. Us patient organizations focused on rare businesses. So it might be similar in the Western canon to like maybe the medically unexplained disease.

384
01:15:36.000 --> 01:15:40.000
I don't know, in the literature, yeah? I think so, you're something. It's just interesting.

385
01:15:40.000 --> 01:15:48.000
Just, okay, thank you.

386
01:15:48.000 --> 01:16:02.000
Thank you very much. One for a question and answers. So any other questions and comment? How about the participant for through the zoom?

387
01:16:02.000 --> 01:16:06.000
So, Michael Dent, do you have any comment?

388
01:16:06.000 --> 01:16:08.000
And I had something.

389
01:16:08.000 --> 01:16:12.000
Oh. Yeah, please, please.

390
01:16:12.000 --> 01:16:22.000
Okay, empowerment. The patience and empowerment is very important. But, we, observe during our research project.

391
01:16:22.000 --> 01:16:36.000
Also, the need of a specific training on communication on pay a doctor patient communication for the doctor. They also for young doctors.

392
01:16:36.000 --> 01:16:51.000
So this is it is a time. An issue, an issue of time during consultation. So how can I give floor to the patient's participation.

393
01:16:51.000 --> 01:17:02.000
Because I have strict, it's very strict the time of my of my medical consultation. But it's also an issue of training.

394
01:17:02.000 --> 01:17:03.000
Yeah, yeah.

395
01:17:03.000 --> 01:17:09.000
On doctor patient communication more patient standard.

396
01:17:09.000 --> 01:17:10.000
So we have to work about this.

397
01:17:10.000 --> 01:17:18.000
Thank you very much. Yep. Yeah, yeah, and the doctor has a education to how to communicate with patient through the medical education.

398
01:17:18.000 --> 01:17:26.000
Thank you very much. So.

399
01:17:26.000 --> 01:17:27.000
First, I like it, please. Yes, yes.

400
01:17:27.000 --> 01:17:32.000
Yep. Can you hear me? Yeah, no, there was a fascinating set of papers. I really enjoyed them.

401
01:17:32.000 --> 01:17:44.000
And pretty enlightening. Yeah, I particularly, yeah, so the big thing that was coming to my mind is the notion of the empowerment of the patient.

402
01:17:44.000 --> 01:17:53.000
I didn't pick up in any of the presentations where that in Parliament was coming from. It read as if it was something that had.

403
01:17:53.000 --> 01:18:03.000
Develop naturally the medical profession had inraced it. And we're engaged with it.

404
01:18:03.000 --> 01:18:13.000
And I do that was a probably because of the focus of the. Of the research in terms of the medical encounter.

405
01:18:13.000 --> 01:18:22.000
But, I just wondered if anybody had any comments on Where is there particular countries with medical empowerment?

406
01:18:22.000 --> 01:18:34.000
Motivation was coming from was it from the profession the government from, patient associations. What?

407
01:18:34.000 --> 01:18:49.000
Thank you very much. So, can I, confirm your question? So your your question is I saw any any Any country so the

408
01:18:49.000 --> 01:18:50.000
Their relationship with the government and

409
01:18:50.000 --> 01:18:55.000
Well, yeah.

410
01:18:55.000 --> 01:19:01.000
Where, where? Where do they.

411
01:19:01.000 --> 01:19:05.000
Presented the papers.

412
01:19:05.000 --> 01:19:19.000
Where did they see the drive for? Patient empowerment coming from, is it from patient groups?

413
01:19:19.000 --> 01:19:20.000
Oh.

414
01:19:20.000 --> 01:19:23.000
Was it from the government? Was it from the profession? Because it wasn't clear from there. Papers.

415
01:19:23.000 --> 01:19:30.000
That's not a criticism. It's just an inquiry.

416
01:19:30.000 --> 01:19:40.000
So, so where the patient in Parliament comes from, from patients. Group of themselves or from government. Or from some others.

417
01:19:40.000 --> 01:19:41.000
So that it is that. Is that? Do you want to answer or?

418
01:19:41.000 --> 01:19:48.000
Yeah, for the professional mathematics. Yeah.

419
01:19:48.000 --> 01:19:54.000
Who? So maybe. Hmm. Oh, yeah.

420
01:19:54.000 --> 01:20:05.000
I mean I as far as I know for the case that I know it's coming mainly from persons association.

421
01:20:05.000 --> 01:20:16.000
Because they are much more active on the collecting information and making

422
01:20:16.000 --> 01:20:26.000
But let's say, information to spread the information about this illness on society. Organizing public events.

423
01:20:26.000 --> 01:20:45.000
So or. Trying to work much more with the a psychologist on this task. And using the, you know, these competences of psychologists to try the psychologist, they became a kind of trade union between persons and medical staff.

424
01:20:45.000 --> 01:20:55.000
So, for them the psychologist on the units are the best allies for working on tensions in Parliament.

425
01:20:55.000 --> 01:21:05.000
Thank you very much. So the, I would like to share an example in Hong Kong and Technically.

426
01:21:05.000 --> 01:21:07.000
Hi, I can't hear very well.

427
01:21:07.000 --> 01:21:16.000
Oh. Thank you. Okay. Okay, I would like to share and simple from Hong Kong.

428
01:21:16.000 --> 01:21:34.000
Okay, so my research area is health policy and I am investigating some decision-making. Among the policy are where when when a technology or medicine is going to listed in the reimbursement list into the government reimbursed by the government.

429
01:21:34.000 --> 01:21:44.000
And what is the role of patient organizations? And I think and after reviewing the literature I think it varies among in many countries.

430
01:21:44.000 --> 01:21:59.000
For example, in the in the UK, the health technology assessment system in UK in, for example in England is well established.

431
01:21:59.000 --> 01:22:24.000
When, when the government is going to make a decision about whether to inverse technology of management or not, they It will visit the patient group into department to make the decision and They cannot go through a pause without patients, but on a country in Hong Kong or some Asian countries, I think

432
01:22:24.000 --> 01:22:34.000
For example in Hong Kong, the research, the decision-making committee is mainly composed of doctors.

433
01:22:34.000 --> 01:23:04.000
Instead of patients. When, when the decision making is made and they would inquire the patient group for consultant or any opinion but sometimes it is a sort of tokenism, a sort of format instead of real participation in to the position making of health systems yeah thank you Thank you very much.

434
01:23:06.000 --> 01:23:07.000
So he said you. Doing.

435
01:23:07.000 --> 01:23:19.000
Yes. Yes. according to, the scientific literature and the research evidence, I can say that We can say that.

436
01:23:19.000 --> 01:23:28.000
In the last, at the end of the last century. The idea of person.

437
01:23:28.000 --> 01:23:39.000
The idea of a personalization. Became increasingly important also in medicine. And in another field, social fields.

438
01:23:39.000 --> 01:23:50.000
Okay. So, the attention towards, the specificity. And the needs unmet needs.

439
01:23:50.000 --> 01:24:02.000
Of patients. Became increasingly, important, relevant. And, this This is, also.

440
01:24:02.000 --> 01:24:19.000
Confirmed by, the idea that the care, the effectiveness of care. Increase thanks to the attention to what the patient's narrative.

441
01:24:19.000 --> 01:24:36.000
Needs ideas, contribution during the interaction of the visit. This is a so And though in Italy there are in the logical fields there are then there are also these groups of self help.

442
01:24:36.000 --> 01:24:51.000
Groups of discussion about their disease, about their experience of disease. So it's very interesting. This movement also by patients and relatives and families of themselves.

443
01:24:51.000 --> 01:24:53.000
So.

444
01:24:53.000 --> 01:24:55.000
Thank you very much. Thank you very much. Wonderful question. And investors.

445
01:24:55.000 --> 01:24:58.000
Thank you.

446
01:24:58.000 --> 01:25:19.000
So I'd like to add some comment. So as I researched, like a peer support and patients have each other, it is now becoming very important and also on the page group itself and the government has a great role for patient groups to.

447
01:25:19.000 --> 01:25:32.000
Have to be empowered. And also how to actually add the Hamas Shooter Company and Life Science Company also emphasized power over patient groups.

448
01:25:32.000 --> 01:26:00.000
For my preservation in Japan, in Japan domestically and internationally the pharmaceutical company creates some patient groups international communication and hold up their big Conference in Singapore or No state and to create a new drug and to create a new, you know, to improve the, you know, the drug effectiveness.

449
01:26:00.000 --> 01:26:20.000
So there are many factors. To for the patient. Oh, groups to make big road to compare to previous stages.

450
01:26:20.000 --> 01:26:21.000
Thank you.

451
01:26:21.000 --> 01:26:42.000
Thank you very much. Yes, because I just come into my mind. On multiple steros is the youth group they are very active and they are active using social media so for them social media it became a way to tell about to tell people about the illness and also to give support.

452
01:26:42.000 --> 01:26:47.000
So it kind of self-help and the space of also of creativity. For example, graphic medicine became more and more important.

453
01:26:47.000 --> 01:26:57.000
So the way to tell the illness and the experience with the illness and the experience with the illness. They are using the graphics.

454
01:26:57.000 --> 01:27:05.000
And so this is enforced in workforce and support especially young people that I mean facing it's very difficult.

455
01:27:05.000 --> 01:27:16.000
Situation so to the early you know appearance of the illness and the management of the age it's quite more complicated than in other life.

456
01:27:16.000 --> 01:27:29.000
So this is I think it's important to kind of sell type and the cell type. It's worth more with youth people than the age people.

457
01:27:29.000 --> 01:27:30.000
Okay.

458
01:27:30.000 --> 01:27:34.000
Thank you very much. It's very So are there any comment or questions?

459
01:27:34.000 --> 01:27:47.000
No. So I saw the She, sorry, Eddie, Eddie mentioned the, you know, theographic.

460
01:27:47.000 --> 01:28:03.000
Graphic medicine and So, you know, the new technology is implemented now and actually yesterday I made the day before yesterday I made a presentation about the digitalization of pure support.

461
01:28:03.000 --> 01:28:15.000
So I made a kind of experimental research to implement a virtual reality in Avatar. When the people do a peer support or patient.

462
01:28:15.000 --> 01:28:28.000
Groups and there are some positive effect. To implement such a new technology so maybe this is another topic but it is a very important to improved.

463
01:28:28.000 --> 01:28:38.000
You know, the healthcare condition. Oh, that.

464
01:28:38.000 --> 01:28:53.000
So in your other courage to your Maybe I think. We have a very small group. So if you we have another 2015 or 20 min.

465
01:28:53.000 --> 01:29:04.000
So each of you have So mentioned something. No? Yeah, he's pretty sweet.

466
01:29:04.000 --> 01:29:14.000
I'll take my technical hat off. And put my sociological head on. I'm curious, Alyssa, from a, from a narrative perspective.

467
01:29:14.000 --> 01:29:43.000
You know, in that, that patient doctor relationship is an ongoing relationship. And so in the construction of reality and the construction of identity you're really getting aren't you quite fragmented pieces of the narrative.

468
01:29:43.000 --> 01:29:54.000
Temporal perspective. But in a spatial perspective and by space I mean as the you know a disease progresses or you know an understanding of a disease progresses.

469
01:29:54.000 --> 01:30:07.000
The construction of their reality or their identity might change. You know as a as a consequence so how you might encourage a doctor to you know make those fragments come together in something that was more, you know, holistic.

470
01:30:07.000 --> 01:30:17.000
As a narrative. Does that make sense?

471
01:30:17.000 --> 01:30:31.000
It's a difficult question. Thank you. This is a, why we, video record we choose to video record first visits.

472
01:30:31.000 --> 01:30:44.000
But also follow up visits. Because, Since the idea is this, Cool construction.

473
01:30:44.000 --> 01:31:01.000
Over the time during the their oncological experience. So it's. It's an issue again, it's an issue of training doctors, young doctors.

474
01:31:01.000 --> 01:31:12.000
To this. Perspective of cool construction but also ongoing process.

475
01:31:12.000 --> 01:31:26.000
Dynamic process. And also the idea that the, the time, the space, but also the form of communication use you use during the consultation influences.

476
01:31:26.000 --> 01:31:37.000
That the narrative, the patience and narrative. So it's we have to reflect about this.

477
01:31:37.000 --> 01:31:48.000
In the for the future time. So I don't know. I have to think about it.

478
01:31:48.000 --> 01:32:02.000
Thank you. Thank you very much. I have a question for Elisa my high and he said do the doctors review the recorders and how if they do, how they react.

479
01:32:02.000 --> 01:32:15.000
Yes, yes. Good question. We, finished with we closed the project. On, February or January.

480
01:32:15.000 --> 01:32:25.000
Okay. 23. And at the beginning of March, We, organize the in my departments.

481
01:32:25.000 --> 01:32:37.000
A address to all the doctors who participated during the, year in the project, but also new doctors.

482
01:32:37.000 --> 01:32:52.000
So who are now, the faculty of medicine, okay, especially Moderna. But they.

483
01:32:52.000 --> 01:33:05.000
They reacted very well because, they were really Aware of the potentiality of the quality qualitative study.

484
01:33:05.000 --> 01:33:17.000
On ongoing interaction. So they said, oh my god. Here I was a 2 hmm controlling the patient.

485
01:33:17.000 --> 01:33:29.000
All now here is very good because the patient could take the floor So they reacted. I very well.

486
01:33:29.000 --> 01:33:46.000
And, because the idea is You will not be evaluated. By our analysis. We can give you some indication, some suggestions about good practices for the future.

487
01:33:46.000 --> 01:33:56.000
Okay. In order to improve the relationships, the communication. During your magical or in a medical consultation.

488
01:33:56.000 --> 01:34:02.000
And also in order to improve. The care of the patients.

489
01:34:02.000 --> 01:34:13.000
Today adapt the language to the understanding of oppression because I assist several times Doctors speaking in a very professional way.

490
01:34:13.000 --> 01:34:25.000
But in a way which it was and understandable for the passage so there was a really gap of communication between doctor and persons.

491
01:34:25.000 --> 01:34:41.000
No, we didn't. In the during the transcription of our video recorded consultation. In the majority of these 84 visits.

492
01:34:41.000 --> 01:34:52.000
We video record. We observed also this kind of. I, how can I say?

493
01:34:52.000 --> 01:35:07.000
Simplification of the language you used Why? Because the, doctor during his or their active listening.

494
01:35:07.000 --> 01:35:17.000
Can check how? And if and how the patient was able to understand. Okay, the information.

495
01:35:17.000 --> 01:35:33.000
The given so It's very interesting to observe also this. Downgrading of epistemic authority So the doctor downgraded there a epistemic authority and tried to check.

496
01:35:33.000 --> 01:35:45.000
And to understand if the patient was able to understand. Okay, it's this is because the dialogic facilitation was the main form of communication they used.

497
01:35:45.000 --> 01:35:54.000
And not a monological and traditional institutional susceptible form of communication.

498
01:35:54.000 --> 01:36:20.000
Thank you very much. So the session with patient participation and I Leary, I told like a doctor who of Hong, I also do research on the patient patient groups and as you mentioned most of the patient group they are operating by volunteer and it is sometimes indicated.

499
01:36:20.000 --> 01:36:31.000
It's not sustainable because it's a volunteer and there are many pure full-time worker and even the full-time worker the salary is very low.

500
01:36:31.000 --> 01:36:40.000
So, to promote the patient participation in medicine, so it is a last question. What do you think?

501
01:36:40.000 --> 01:37:02.000
What what is needed to promote the the patient participation. So. Always needed to, yeah, you mentioned that the patient organization in China or specific internationally is hard to sustain.

502
01:37:02.000 --> 01:37:28.000
So I believe So the the main objective of my research is how to gain more fundraising amount. Maybe we need to sort out some strategies for more fundraising, including how to cooperate with the government, how to gain more funding from the government or even the pharmaceutical companies.

503
01:37:28.000 --> 01:37:44.000
I think the first thing is to make the unsustainable is that to make and have money And secondly, we need to transform transform transform the resources into the effective thing of the social sport.

504
01:37:44.000 --> 01:38:00.000
Provided by the patient organizations. Yeah, and maybe the contest is different in different countries. Like for example in China where this is or NGOs non-government organizations are not allowed to accept.

505
01:38:00.000 --> 01:38:12.000
Any external findings from abroad, internationally. So the major, the major source of funding comes from the government.

506
01:38:12.000 --> 01:38:27.000
Some strategies must be for like how to get wrong well with the government or how to understand well the fundraising or other project project runs before by the government.

507
01:38:27.000 --> 01:38:41.000
Yeah. And in this way, to make the organization more sustainable and then to get more involved in the patient participation.

508
01:38:41.000 --> 01:38:49.000
Yeah, that's the answer. Thank you very much. Yeah, It's I found there are no such kind of role and N 0 in.

509
01:38:49.000 --> 01:39:03.000
In China so yeah it's their solution maybe depending on the country and the healthcare system. Thank you very much.

510
01:39:03.000 --> 01:39:16.000
And also I have a question for Professor Ishou. Yes. At the examples we presented were mainly includes females, right?

511
01:39:16.000 --> 01:39:29.000
Patience with females and and also you mentioned that the populations of are not processed a female of the female of the disease is 3 times greater than males.

512
01:39:29.000 --> 01:39:39.000
Have you interviewed any of my patients and what's the difference? Between MLs and females when confronted this is.

513
01:39:39.000 --> 01:39:54.000
Yeah, I interview also man. I mean one main problem is the compliance yeah and the compliance because there are They don't care too much about their body.

514
01:39:54.000 --> 01:40:04.000
And they need always a female figure that pushed them. Sometimes their wife, sometimes the sister, sometimes is a mother.

515
01:40:04.000 --> 01:40:20.000
To adapt to the compliance. Another important issue and just we talked last last week we had a conference on this How man, that never speak about the sexual problem.

516
01:40:20.000 --> 01:40:37.000
On multiple sclerosis is one of the important symptoms. With the when the the problem is is worsening but they deny all the time all the time, 90% of my patient they deny that they have sexual program.

517
01:40:37.000 --> 01:41:04.000
So they are thinking to do without their consent. To do some you know block check because I don't remember the chemical on this because they said I just forgot but they say there is a way to do it Just we put it in the routine screening Okay, so then we can we can know because it's an important thing the worsening and the the

518
01:41:04.000 --> 01:41:20.000
illness So that's, I mean, so reflects how they don't care too much about their body and they' ashamed to talk about this issue.

519
01:41:20.000 --> 01:41:33.000
Sure. So maybe you already had a great discussion. So thank you very much for the presenter and the audience and participant and the volunteer Mr. Tom.

520
01:41:33.000 --> 01:41:39.000
Thank you.