ISPOR Europe 2024: Navigating the conference program – focus on patient centricity

With the upcoming European conference for ISPOR—The Professional Society for Health Economics and Outcomes Research, ISPOR Europe 2024, we take a closer look at some of the key sessions focusing on patient centricity.

Selected sessions

By engaging patients in healthcare research, patient centricity evolves from a mere concept into a tangible practice—one that aligns healthcare solutions with the real needs, values, and preferences of the patients they aim to serve. Identified as one of ISPOR's top health economics and outcomes research (HEOR) trends for 2024–2025, patient centricity will feature significanctly during ISPOR Europe 2024 (November 17–20, Barcelona) as sessions explore how this approach is shaping the future of healthcare. Featured sessions addressing patient centricity include:

Empowering Patients to Be Effective Stakeholders and Partners in the EU HTA Process (Monday November 18, 10:15am – 11:15am)

As the EU Health Technology Assessment Regulation (HTAR) nears implementation in January 2025, patients and patient organizations need to be fully informed to provide meaningful contributions to the new EU HTA process. A panel moderated by Maria Dutarte (EUPATI, The Netherlands) will discuss educational content for patients, with EUPATI panelists Finn McCartney (The Netherlands), Lotte Klim (Denmark), and Mitchell Silva (Belgium) addressing challenges and previewing EUPATI's HTA4Patients Project.

Learn more about the pivotal role patients can play in shaping the new EU HTA process in our interview with Maria Dutarte.

Co-Creating a Clinical Outcome Assessment (COA) Strategy With Patient Partners: Guidance, Good Practice Methods, and Case Examples (Monday November 18, 1:45pm – 2:45pm)

Globally, stakeholders recognize the importance of early patient engagement (PE) and co-creation for achieving patient-focused outcomes. This workshop, led by Eleanor Perfetto (University of Maryland, USA), will review existing co-creation methods for clinical outcome assessment (COA) strategies, followed by case examples presented by Michelle Campbell (FDA, USA), Gunnar Esiason (Boomer Esiason Foundation, USA), and Angela Rylands (Kyowa Kirin, UK). Discussions will evaluate co-creation practices, barriers, and their impact on COA strategies.

ISPOR Patient Engagement in HEOR (Monday November 18, 4:15pm – 5:15pm)

Following the ISPOR Patient-Centered Research Summit 2024 earlier this year, this Member Group meeting will center on applying the insights from this meeting to progressing patient-centered research and address potential challenges in European healthcare. The session will bring perspectives from academia, healthcare, and regulatory bodies to explore collaboration and enhance patient involvement in HEOR decision-making.

From Methods to Implementation: Real-World and Regulatory Applications of Patient Experience Data Through Patient Experience Mapping & Patient Involvement (Tuesday November 19, 10:15am – 11:15am)

Led by Silke Schoch (National Health Council, USA), this workshop aims to educate HEOR professionals on the Patient Experience Mapping Toolbox (PEMT), a patient-developed resource to engage and document patient experiences. Discussants Elisabeth Oehrlein (Applied Patient Experience, LLC, USA), Ramiro Gilardino (MSD, Switzerland), and Derick Mitchell (IPPOSI, Ireland) will present real-world applications of the PEMT, its relevance in European settings, and its integration with other patient initiatives.

How Can We Move From Generating Robust Patient Preference Information to Producing Decision-Ready Outputs? (Tuesday November 19, 1:45pm – 2:45pm)

This Worksop will discuss and demonstrate various methods that can be applied to overcome any potential challenges in transforming patient preference information into decision-ready outputs. Building on recommendations from a recent ISPOR taskforce, Sebastian Heidenreich (Evidera, UK) will present on preference-based trial simulations for benefit-risk assessments. Paul Schneider (Valorem Health, Germany) will demonstrate preference elicitation tools for shared decision-making, and Divya Mohan (OPEN Health, UK) will use economic evaluation tools by demonstrating a Markov Model to assess the costs and benefits of preference-based decision-making compared to QALY-based models. The workshop aims to address challenges and showcase practical solutions for integrating patient preferences in healthcare decisions.

Integrating the Patient Voice Into Economic Assessments of Health Technologies (Wednesday November 20, 8:00am – 9:00am)

Moderator Nan Qiao (Merck, USA) will lead a panel, organized by the ISPOR Patient-Centered Special Interest Group, with Anke-Peggy Holtorf (HTAi, Switzerland), Andrew Briggs (London School of Hygiene and Tropical Medicine, UK), and Bettina Ryll (Melanoma Patient Network Europe, Sweden) to discuss patient engagement in economic evaluations of health technologies. The panel will explore methods for involving patients in cost-effectiveness analyses (CEAs) and the broader value assessments. Each panelist will provide insights from their respective backgrounds—HTA, economic modeling, and patient advocacy—addressing challenges and opportunities for improving patient-centered health economic research.

Patient-Centered Research: Using Patient Experience Data Generated During Drug Development to Inform Healthcare Decision-Making: What Researchers Need to Know to Generate Fit-for-Purpose Data While Considering the Global Picture Wednesday November 20, 8:00am – 9:00am)

Solange Corriol-Rohou (AstraZeneca, France) will moderate a panel featuring Niklas Hedberg (TLV, Sweden) and Rosa Gonzalez-Quevedo (EMA, The Netherlands) to tackle the unclear role of patient experience data in supporting drug development. The panel will explore diverse perspectives—regulatory, HTA, and industry—to establish a framework for using patient data effectively. Discussions will center around who is responsible for generating patient experience data, how stakeholders can collaborate, and what the future holds for systematic patient input in drug development, including practical examples and potential global guidance.

Take My Word for It: Can Patient-Centric Social Listening Enrich RWE? (Wednesday November 20, 10:00am – 11:00am)

In an increasingly ‘connected world’, social media platforms offer a wealth of patient experiences, providing valuable insights into disease burden, quality of life, and treatment outcomes. Moderated by Siddharth Ramanan (Costello Medical, UK), this panel will delve into the potential of social media listening (SML) as a source of real-world data (RWD). Jackie Cuyvers (Convosphere, UK) will discuss the use of AI in SML, Mary Jo Lamberti (Tufts University, USA) will highlight challenges and applications in clinical settings, and Jeanette Kusel (NICE, UK) will provide a decision-maker’s perspective on standards for SML in health technology assessments.

Latest research in patient centricity

Maria Dutarte (EUPATI, The Netherlands) features on the program again for ISPOR Europe 2024 moderator for the Podium Session on Tuesday November 19 (10:15am – 11:00am) entitled “Patient Voices in Research: Exploring Information Needs, Online Behaviors, and Unmet Health Needs”. Research being discussed during this session includes:

• Australian Vasculitis Patients Informational Needs Questionnaire (AVPINQ) – Kathryn Trippe (Australia)
• A Phenomenological Study Utilizing the Patient Experience Mapping Toolbox: Treatment Trade-Off Perceptions in Chronic Disease Patients – Omar Escontrías (National Health Council, USA)

Patient-Centered Research is one of the largest categories of posters for ISPOR Europe 2024, reflecting the society's and its members' increased focus on prioritizing patient perspectives in healthcare decision-making. Selected research being presented over the three days includes:

• Capturing the Real-World Patient Perspective in HTA: Expert Patient Insights Lead to Robust Healthcare Cost and Resource Use Inputs for Cost-Effectiveness Model in Spinal Muscular Atrophy – Rebecca Beale (Costello Medical, UK; Monday 18, Poster Session 1)
• Do Patient Reported Outcomes Impact Payer Decisions? A Qualitative Study – Anna Steenrod (Roche, Switzerland; Monday 18, Poster Session 1)
• Is There Enough Focus on Capturing Data From Pediatric Patients and Their Caregivers in Non-Oncology Indications? – Jan McKendrick (Avalere Health, UK; Monday 18, Poster Session 1)
• Authoring of Peer-Reviewed Articles on the Experiences of Patients With Rare Diseases by Patients and Their Caregivers: A Rapid Review – Phillip Leventhal (Evidera-PPD, UK; Monday 18, Poster Session 1)
• Perceptions of Rare Disease Patients and Their Caregivers Regarding Access to Disease Information and Interactions With Their Healthcare Providers: Results From an International Survey – Siva Narayanan (Avant Health, USA; Monday 18, Poster Session 1)
• From Insights to Impact: How the Patient Perspective Changed the Major Depressive Disorder Open-Source Value Model – Rick Chapman (Center for Innovation & Value Research, USA; Monday 18, Poster Session 1)
• Towards a Consensus on Patient-Centered HTA for Rare Diseases in the U.S.: Insights From Global Literature – Rick Chapman (Center for Innovation & Value Research, USA; Monday 18, Poster Session 2)

Read more about this research in our interview with Rick Chapman.

• Hearing the Patient Voice: Effective Engagement Strategies for Technology-Led Real World Studies – Ian Bonzani (IQVIA, UK; Monday 18, Poster Session 2)
• Barriers and Facilitators to the Recruitment and Engagement of Diverse Populations Into Patient Engagement Groups: A Scoping Review Colleen Cuthbert (University of Calgary, Canada; Monday 18, Poster Session 2)
• Incorporating Patient Perspectives in Rare Disease Drug Development and HTA – Kinga Malottki (Sanofi, UK; Monday 18, Poster Session 2)
• Assessing Patient Experience With Cardiovascular Diseases Using the PREMs Tool – Konstantina Briola (University of Piraeus, Greece; Tuesday 19, Poster Session 3)
• Understanding the Patient Experience in Early Breast Cancer (eBC): A Review of Patient-Reported Outcomes Measures (PROMs) Used in Real-World Evidence (RWE) – Ashley Duenas (Evidera, UK; Tuesday 19, Poster Session 3)
• Use of Qualitative In-Trial/Exit Interviews in Product Labelling and Health Technology Assessments – Nate Johnson (Lumanity, USA; Tuesday 19, Poster Session 3)
• Evaluating Patient Perceptions and Preferences of Biosimilars in South Korea – E Choi (Ewha Womans University, South Korea; Tuesday 19, Poster Session 4)
• Can Patient Involvement Help Optimize Patient Outcomes and Healthcare Decision-Making? – Devan Hopkinson (Remap Consulting, UK; Tuesday 19, Poster Session 4)
• Patients' Willingness to Pay for Health Interventions in Spain: A Systematic Review – Susana Aceituno (Evidenze Health, Spain; Tuesday 19, Poster Session 4)
• Enhancing Patient-Centricity in Cardiovascular Outcomes: Exploring Endpoint Strategies With Clinical Outcome Assessments (COA) in Approved Drugs for Chronic Heart Failure – Celine Desvignes-Gleizes (Mapi Research Trust, France; Wednesday 20, Poster Session 5)
• Are Patients’ Perspectives Implemented in Clinical Trial Designs? A Literature Review and Semi-Structured Interviews to Explore Current Practices and Improvement Opportunities – Alice Vanneste (KU Leuven, Belgium; Wednesday 20, Poster Session 5)

Coverage by The Evidence Base

The Evidence Base will be providing exclusive coverage of ISPOR Europe 2024 (November 17–20, 2024, Barcelona, Spain), providing daily rounds-ups of many of the sessions as well as deep dives into the three plenaries. Register on The Evidence Base and follow us on LinkedIn to make sure you don't miss any of our coverage and to ensure you stay up-to-date with the latest insights and developments from the conference.