ISPOR - Patient Representatives Roundtables

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<li class="dropdown-submenu "> <a href="/conferences-education/conferences/past-conferences/ispor-rwe-summit-2023/program" target="_self">Program <span class="right-caret"></span> </a> <span class="dropdown-toggle icon-plus"></span> <ul class="dropdown-menu"> <li class=" "> <a href="/conferences-education/conferences/past-conferences/ispor-rwe-summit-2023/program/program-committee" target="_self">Program Committee</a> </li> <li class="dropdown-submenu "> <a href="/conferences-education/conferences/past-conferences/ispor-rwe-summit-2023/program/program" target="_self">Program <span class="right-caret"></span> </a> <span class="dropdown-toggle icon-plus"></span> <ul class="dropdown-menu"> <li class=" "> <a href="/conferences-education/conferences/past-conferences/ispor-rwe-summit-2023/program/program/session" target="_self">Session</a> </li> <li class=" "> <a href="/conferences-education/conferences/past-conferences/ispor-rwe-summit-2023/program/program/paper" target="_self">Paper</a> 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target="_self">Plenary Sessions</a> </li> <li class=" "> <a href="/conferences-education/conferences/past-conferences/ispor-europe-2022/program/spotlight-sessions" target="_self">Spotlight Sessions</a> </li> <li class=" "> <a href="/conferences-education/conferences/past-conferences/ispor-europe-2022/program/posters" target="_self">Posters</a> </li> <li class=" "> <a href="/conferences-education/conferences/past-conferences/ispor-europe-2022/program/educational-symposia" target="_self">Educational Symposia & HEOR Theater</a> </li> <li class=" "> <a href="/conferences-education/conferences/past-conferences/ispor-europe-2022/program/program-committee" target="_self">Program Committee</a> </li> <li class=" "> <a href="/conferences-education/conferences/past-conferences/ispor-europe-2022/program/speaker-poster-presenter-resources" target="_self">Speaker & Poster Presenter Resources</a> </li> <li class=" "> <a 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href="/member-groups/new-professionals/professional-development-resources/replicate-regulate-and-redefine-rwe-use-cases-in-the-next-decade---session-3" target="_self" class="">Replicate, Regulate, and Redefine: RWE Use Cases in the Next Decade - Session 3</a> </li> </ul> </li> </ul> </li> <li class=""> <a href="/member-groups/online-communities" target="_self" class="">Online Communities</a> </li> </ul>  </div> </div> <div id="Main_TF55916FE001_Col01" class="sf_colsIn col-md-9 ispor-content" data-sf-element="Column 2" data-placeholder-label="Column 2"> <div > <div class="sfContentBlock sf-Long-text" ><h2>Goal</h2><p>The goal of the Patient Representatives Roundtable is to provide a platform for patient representatives to interact with other stakeholders and determine how best to engage patient representatives in the research and decision making processes.</p></div> </div> <div > <div class="sfContentBlock sf-Long-text" ><h2>ISPOR Patient Representatives Roundtables</h2><p><span style="font-size:xx-small;"></span></p></div> </div> <div > <div class="sfContentBlock sf-Long-text" ><div class="accordion"><div class="accordion-item"><header><h4>Patient Representatives Roundtable – Asia Pacific</h4><span class="icon-plus pull-right"><span style="background-color:transparent;color:inherit;font-family:inherit;font-size:var(--font-size-h4);font-weight:bold;text-align:inherit;text-transform:inherit;white-space:inherit;word-spacing:normal;caret-color:auto;"></span><br /></span></header><section><div><p></p></div><h4>2023 Patient Representatives Roundtable - Asia Pacific</h4><h5>Virtual| 10 October 2023</h5><p>On 10 October 2023, the ISPOR 2023 Patient Representatives Roundtable – Asia Pacific convened 28 stakeholders from 12 Asia Pacific countries, representing multiple perspectives (chronic and rare disease patient organizations, researchers, health technology assessment bodies, and government agencies). This year's theme is 'The Patient Lived Experience: How it's Defined and Constructs of Tolerance and Capacity Building for Improving the Patient Voice.' Topics of discussion included the value of real-world data from patient organizations and their applications in China, health equity and cultural safety, the importance of consumer and patient engagement, and how different stakeholders propose ways to bridge gaps in health equity. Read the roundtable summary <a href="https://www.ispor.org/publications/newsletters/news-across/asia-pacific/2023/11/02/summary-report-from-ispor-2023-patient-representatives-roundtable-(prr)-asia-pacific-2023" target="_blank" data-sf-ec-immutable="">here.</a><br /></p><h4>2021 Patient Representatives Roundtable - Asia Pacific</h4><h5>Virtual | 2 November 2021</h5><div><p>The Roundtable convened 30 multi-stakeholders from 12 Asia Pacific countries representing chronic and rare disease patient organizations, researchers, health technology assessment bodies, and government agencies. Presentations from Oracle Health and the Lymphoma Coalition highlighted the value and use of digital health for chronic disease management and ways to improve access to care and accelerate health equity. The roundtable attendees discussed lessons learned from the COVID-19 pandemic and how different stakeholders evaluate the value and effectiveness of telemedicine, while incorporating the patient perspective on the benefits and limitations of telemedicine. Read the roundtable summary <a href="https://www.ispor.org/publications/newsletters/news-across/view/2022/02/21/summary-report-from-ispor-2021-patient-representatives-roundtable-(prr)-asia-pacific-2021" target="_blank" data-sf-ec-immutable="">here. </a></p></div><h4></h4><h4>2020 Patient Representatives Roundtable - Asia Pacific </h4><h5>Virtual | 10 September 2020<br /></h5><p>The ISPOR Patient Representatives Roundtable-Asia Pacific was held virtually on 10 September and convened more than 30 participants, including patient representatives, researchers, government and HTA bodies, and the pharmaceutical industry. The Roundtable featured presentations from the Center for Drug Evaluation in Taiwan and the HTA Unit from the Philippines Ministry of Health, as well as discussions on the challenges and opportunities for how to promote patient involvement in healthcare decision making processes in the Asia-Pacific region.  </p><h4><o:p>Previous Patient Representatives Roundtables - Asia Pacific</o:p></h4><p><o:p>2019 - Beijing, China </o:p></p><p>2018 - Tokyo, Japan</p><p> </p></section></div></div></div> </div> <div > <div class="sfContentBlock sf-Long-text" ><div class="accordion"><div class="accordion-item"><header><h4>Patient Representatives Roundtable – Europe</h4><span class="icon-plus pull-right"></span></header><section><h4>2023 Patient Representatives Roundtable - Europe</h4><h5>Copenhagen, Denmark | 12 November 2023</h5><div><p>The ISPOR 2023 Patient Representatives Roundtable – Europe took place on November 12th in Copenhagen, Denmark, with 16 stakeholders from 14 European countries attending. The attendees included patient representatives, researchers and academics, industry representatives, and regulatory and government participants. The theme for this year's roundtable was 'Joint Clinical Assessment (JCA): Will it improve the patient experience of involvement in HTA?' The discussion topics included an overview of JCA and PICOs (patient/population, intervention, comparison, and outcomes), patient involvement in HTA (Health Technology Assessment) in Europe, and JCA training for patients. <a href="https://www.ispor.org/publications/newsletters/news-across/view/2024/01/24/summary-report-from-ispor-2023-patient-representatives-roundtable-(prr)---europe-2023" target="_blank" data-sf-ec-immutable="">Read the roundtable summary here. </a></p></div><h4>2022 Patient Representatives Roundtable - Europe</h4><h5>Virtual | 30 November 2022</h5><div><p>The Patient Representatives Roundtable - Europe convened virtually on 30 November 2022 and brought together <span style="background-color:transparent;color:inherit;font-family:inherit;text-align:inherit;text-transform:inherit;white-space:inherit;word-spacing:normal;caret-color:auto;font-size:inherit;">more than 35 representatives from patient organizations, government, HTA bodies and payers, researchers, and industry representatives. </span><span style="background-color:transparent;color:inherit;font-family:inherit;font-size:inherit;text-align:inherit;text-transform:inherit;white-space:inherit;word-spacing:normal;caret-color:auto;">Presentations from Irish Platform for Patient Organisations, Science and Industry (IPPOSI) highlighted the history and future direction of the ISPOR Patient Representatives Roundtable – Europe. Presentations from Health Outcomes Strategies GmbH, European Patients' Academy on Therapeutic Innovation (EUPATI), and International Affairs at the Institute for Quality and Efficiency in Health Care (IQWiG) highlighted the evolution of patient involvement in health technology assessment (HTA) and provided an overview of the new EU legal framework on HTA and ways to improve trust between HTA agencies and stakeholders. </span><a href="https://www.ispor.org/publications/newsletters/news-across/europe-middle-east-africa/2023/02/10/highlights-from-the-ispor-2022-patient-representative-roundtable---europe" target="_blank" data-sf-ec-immutable="">Read the summary here. </a></p><h4>2021 Patient Representatives Roundtable - Europe</h4></div><h5>Virtual | 9 December 2021</h5><div><p>The Roundtable gathered virtually on December 9 to discuss patient-generated data and evidence in health technology assessment. More than 30 representatives from various patient organizations, research and academia, health technology assessment bodies, life sciences industry, and regulatory agencies participated in the discussion. Some of the participating and presenting organizations included EUPATI, Irish Platform for Patient Organisations, Science & Industry (IPPOSI), International Alliance of Patients’ Organizations (IAPO), European Haemophilia Consortium, European Medicines Agency, and Swedish Agency for Health Technology Assessment and assessment of Social Services.</p></div> <h4>Previous Patient Representatives Roundtables - Europe</h4><p>2020 - Virtual<br />2019 - Copenhagen, Denmark<br />2018 - Barcelona, Spain<br />2017 - Glasgow, Scotland, UK<br />2016 - Vienna, Austria<br />2015 - Milan, Italy<br />2014 - Amsterdam, The Netherlands<br />2013 - Dublin, Ireland</p></section></div></div></div> </div> <div > <div class="sfContentBlock sf-Long-text" ><div class="accordion"><div class="accordion-item"><header><h4>Patient Representatives Roundtable - Latin America</h4><span class="icon-plus pull-right"></span></header><section><h4></h4><h4>2023 Patient Representatives Roundtable - Latin America</h4><h5>VIRTUAL | 3 August 2023</h5><p>On 3 August 2023, ISPOR held the ISPOR 2023 Patient Representatives Roundtable – Latin America. This roundtable virtually convened 25 patient representatives, government and HTA bodies, academicians & researchers from 11 countries who discussed ways to improve patient centricity and social participation in Latin American countries, the barriers that still exist, and recommendations for addressing these identified gaps.</p><h4>2022 Patient Representatives Roundtable - Latin America</h4><h5>VIRTUAL | 26 JULY 2022</h5><div><p>The ISPOR 2022 Patient Representatives Roundtable – Latin America was held on 26 July 2022. More <span style="background-color:transparent;color:inherit;font-family:inherit;text-align:inherit;text-transform:inherit;white-space:inherit;word-spacing:normal;caret-color:auto;font-size:inherit;">than 30 representatives convened to discuss effective social participation in health technology assessment (HTA) and mapping the patient journey in the process. </span><span style="background-color:transparent;color:inherit;font-family:inherit;text-align:inherit;text-transform:inherit;white-space:inherit;word-spacing:normal;caret-color:auto;font-size:inherit;">Speakers from the Unidos Pela Vida | Instituto Brasileiro de Atenção à Fibrose Cística and Institute of Health Technology Assessment – IETS, the Colombian agency of HTA highlighted the impact of patient input on the HTA process from both the patient perspective and the HTA perspective, respectively. Read the Roundtable summary <a href="https://www.ispor.org/publications/newsletters/news-across/view/2022/11/17/ispor-patient-representative-roundtable-2022---latin-america" target="_blank" data-sf-ec-immutable="">here. </a></span></p></div><h4>2021 Patient Representatives Roundtable - Latin America</h4><h5>VIRTUAL | 24 SEPTEMBER 2021</h5><div><p>On September 24, more than 40 attendees from 13 Latin America countries representing chronic and rare disease patient organizations, academic researchers, clinicians, HTA bodies, and government agencies virtually gathered at the Patient Representatives Roundtable – Latin America to identify how key healthcare stakeholders evaluate the value and effectiveness of digital health, while incorporating the patient perspective on the benefits and limitations of telemedicine. Presentations from the Latin America Pulmonary Hypertension Society and the Fundación SENOSama highlighted how patients can improve skills around digital leadership and digital health and how digital health improve access to care and accelerate equity.</p></div><h4>2019 Patient Representatives Roundtable - Latin America</h4><h5>Bogotá, Colombia | 12 September 2019 <br /></h5><p>Held on 12 September in Bogotá, Colombia, the Patient Representatives Roundtable recently convened to discuss the role of patient participation in health technology assessment (HTA), as well as the elements and methodologies necessary to facilitate the participation of all key stakeholders involved in HTA in the Latin America region. Multi-stakeholder representation including participants from Fundación GIST Chile, Psoriasis Association of Argentina, Global Alliance for Patient Access, Ministries of Health from Brazil and Mexico, Instituto de Evaluación en Salud (IETS), AbbVie, and Pfizer were included in the discussion.<o:p></o:p></p><h4>Previous Patient Representatives Roundtables - Latin America</h4><ul><li>2018 - Lima, Peru</li><li>2017 - São Paulo, Brazil</li></ul><p> </p></section></div></div></div> </div> <div > <div class="sfContentBlock sf-Long-text" ><div class="accordion"><div class="accordion-item"><header><h4>Patient Representatives Roundtable – North America</h4><span class="icon-plus pull-right"></span></header><section><h4></h4><h4>2023 Patient Representatives Roundtable - North America </h4><h5>Boston, MA | May 7, 2023<br /><br /></h5><p>ISPOR held the 2023 Patient Representatives Roundtable – North America on May 7. Attendees gathered to discuss social determinants of health (SDOH) and the importance of harnessing SDOH data in decision making from the perspective of patients, payers, and community health center organizations. This multistakeholder group gave key insights into the current climate of SDOH within impacted communities and populations, how payers are directing their data analysis and targeting improvement of health equity through SDOH, and in what way patient organizations plan to add their voice to the SDOH conversation. Read summary <a href="https://www.ispor.org/publications/newsletters/news-across/view/2023/09/21/ispor-2023-patient-representatives-roundtable-north-america" target="_blank" data-sf-ec-immutable="">here.</a> </p><h4>2022 Virtual Patient Representatives Roundtable - North America</h4><h5>Virtual | June 8, 2022<br /><br /></h5><p>More than 45 attendees from patient organizations and other key stakeholders convened on June 8 to discuss useful and fit-for-purpose patient registries and patient-centered research networks. Presentations from Patient-Centered Outcomes Research Institute (PCORI), National Organization for Rare Disorders (NORD), and the American Institute for Research highlighted research principles and expectations for patient engagement, how to create and maintain a patient registry, and attributes for sustainable partnerships with researchers and patients. This roundtable was co-chaired by Alan Balch, PhD of Patient Advocate Foundation and Lisa J Pieretti, MS, MBA of the International Hyperhidrosis Society. </p><h4>2021 Virtual Patient Representatives Roundtable - North America</h4><h5>Virtual | May 6, 2021<br /><br /></h5><p>On May 6, more than 45 attendees from chronic and rare disease patient organizations, researchers, government, payers, and industry virtually gathered at the Patient Representatives Roundtable – North America to identify the needed measures to assess the value and effectiveness of virtual approaches to healthcare. Presentations from the Familial Hypercholesterolemia (FH) Foundation, the Society to Improve Diagnosis in Medicine, and the National Health Council highlighted the barriers and opportunities to telediagnosis and management of diseases through the use of telemedicine and virtual care. </p><h4> </h4><h4>Previous Patient Representatives Roundtables - North America</h4><p>2020 - Virtual<br />2019 - New Orleans, LA<br />2018 - Baltimore, MD<br />2017 - Boston, MA<br />2016 - Washington, DC<br />2015 - Philadelphia, PA</p><div><p> </p><p> </p></div></section></div></div></div> </div> <div > <div class="sfContentBlock sf-Long-text" ><p> </p><p></p></div> </div> <div > <div class="sfContentBlock sf-Long-text" ><h3>Work Products</h3><hr /><ol class="mg-list-numbered"><li><a href="/publications/journals/value-outcomes-spotlight/abstract/may-june-2018/defining-and-measuring-meaningful-patient-engagement-a-multistakeholder-perspective" data-sf-ec-immutable="">Defining and Measuring Meaningful Patient Engagement: A Multistakeholder Perspective</a> </li><li><a href="/publications/newsletters/news-across/view/2022/02/21/summary-report-from-ispor-2021-patient-representatives-roundtable-(prr)-asia-pacific-2021">Summary Report from ISPOR 2021 Patient Representatives Roundtable (PRR) – Asia Pacific 2021 </a></li></ol></div> </div> <div > <div class="sfContentBlock sf-Long-text" ><h3>Webinars</h3><hr /><ol class="mg-list-numbered"><li><a href="/publications/journals/value-outcomes-spotlight/abstract/may-june-2018/defining-and-measuring-meaningful-patient-engagement-a-multistakeholder-perspective"><em></em></a><a href="https://www.ispor.org/conferences-education/education-training/webinars/webinar/patient-reported-outcomes-webinar-1-(3-part-series)-webinar-1-what-are-pros-and-hrqol-tools">What are PROs and HRQOL Tools?</a></li><li><a href="https://www.ispor.org/conferences-education/education-training/webinars/webinar/patient-reported-outcomes-(3-part-series)-webinar-2-generating-pro-data-and-using-it">Generating PRO Data – and Using It</a></li><li><a href="https://www.ispor.org/conferences-education/education-training/webinars/webinar/patient-reported-outcomes-webinar-3-developing-new-patient-reported-outcomes-instruments">Developing New Patient-Reported Outcomes Instruments</a><br /></li></ol><p> </p></div> </div> <div > <div class="sfContentBlock sf-Long-text" ><h2>For More Information</h2><p>Please <a href="mailto:scientificgroups@ispor.org">contact us</a> for information about the Patient Representatives Roundtables or other patient initiatives.</p></div> </div> </div> </div> </div> </main> <div class="flex"> <div class="col-md-12"> <div class="row container"> <div class="categories-heor-by-topic-container section"> <p>Explore Related HEOR by Topic</p> <hr /> <ul class="list-unstyled"> <li> <a 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