Goal

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.

ISPOR Patient Representatives Roundtables

Patient Representatives Roundtable – Asia Pacific

2022 Patient Representatives Roundtable - Asia Pacific

Virtual | 27 September 2022

The ISPOR 2022 Patient Representatives Roundtable – Asia Pacific will be held on 27 September 2022 (topic – TBD). 

2021 Patient Representatives Roundtable - Asia Pacific

Virtual | 2 November 2021

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 here. 

2020 Patient Representatives Roundtable - Asia Pacific

Virtual | 10 September 2020

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. 

Previous Patient Representatives Roundtables - Asia Pacific

2019 - Beijing, China 

2018 - Tokyo, Japan

 

Patient Representatives Roundtable – Europe

2022 Patient Representatives Roundtable - Europe

Virtual | 16 November 2022

The ISPOR 2022 Patient Representatives Roundtable – Europe will be held on 16 November 2022 (topic – TBD). 

2021 Patient Representatives Roundtable - Europe

Virtual | 9 December 2021
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.

2020 Patient Representatives Roundtable - Europe

Virtual | 24 November 2020

The ISPOR Patient Representatives Roundtable–Europe convened on November 24 to discuss the impact of patient-generated evidence and patient-reported outcomes. More than 35 representatives from various patient organizations, research groups, health technology assessment bodies, health technology industry, and regulatory agencies participated in the discussion. Some of the participating organizations included EUPATI, International Alliance of Patient Organizations, IQWIG, NICE, the European Commission and European Medicines Agency. 

2019 Patient Representatives Roundtable - Europe

Copenhagen, Denmark | 4 November 2019

Held on 4 November in Copenhagen, Denmark, the Patient Representatives Roundtable convened to discuss patient involvement in the development and interpretation of patient-reported outcomes (PROs). Representatives from EUPATI, International Alliance of Patients Organizations (IAPO), multiple cancer organizations, hemophilia and Alzheimer’s disease were among the nearly 20 patient organizations present. Other stakeholders including regulatory and government representatives from the European Medicines Agency and the European Commission, researchers, payer and HTA bodies, and the medical technology industry discussed their perspectives and future direction for involving patients in the research and healthcare decision making processes. 

Previous Patient Representatives Roundtables - Europe

2019 - Copenhagen, Denmark
2018 - Barcelona, Spain
2017 - Glasgow, Scotland, UK
2016 - Vienna, Austria
2015 - Milan, Italy
2014 - Amsterdam, The Netherlands
2013 - Dublin, Ireland

Patient Representatives Roundtable - Latin America

2021 Patient Representatives Roundtable - Latin America

VIRTUAL | 26 July 2022
The ISPOR 2022 Patient Representatives Roundtable – Latin America will be held on 26 July 2022 (topic – TBD). 

2019 Patient Representatives Roundtable - Latin America

Bogotá, Colombia | 12 September 2019 

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.

Previous Patient Representatives Roundtables - Latin America

  • 2018 - Lima, Peru
  • 2017 - São Paulo, Brazil

 

Patient Representatives Roundtable – North America

2023 Virtual Patient Representatives Roundtable - North America

Boston, MA|May 23 (Date TBD)

The ISPOR 2023 Patient Representatives Roundtable - North America is expected to take place during ISPOR 2023 in Boston, MA, USA (date is TBD).

2022 Virtual Patient Representatives Roundtable - North America

Virtual|June 8, 2022

More than 45 attendees from patient organizations and other key stakeholders such as researchers and academicians, assessors and regulators, payers and policymakers, and life sciences industry convened 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.

2021 Virtual Patient Representatives Roundtable - North America

Virtual|May 6, 2021

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. 

2020 Virtual Patient Representatives Roundtable - North America

Virtual| June 15, 2020

The ISPOR Patient Representatives Roundtable-North America convened virtually on June 15 to discuss incorporating patient-generated health data (PGHD) to inform healthcare decision making related to health technology assessment (HTA), value assessment, pricing, coverage, and reimbursement decisions. More than 45 representatives from various patient organizations, payers and HTA bodies, research organizations, government, and the pharmaceutical industry shared their perspectives; including the Arthritis Foundation, Sick Cells, Blue Cross Blue Shield Association, ICER and US FDA. 

 

Previous Patient Representatives Roundtables - North America

2019 - New Orleans, LA
2018 - Baltimore, MD
2017 - Boston, MA
2016 - Washington, DC
2015 - Philadelphia, PA

 

 

 

For More Information

Please contact us for information about the Patient Representatives Roundtables or other patient initiatives.

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