ISPOR 2025: Exploring sessions on patient centricity

Ranked among ISPOR—The Professional Society for Health Economics and Outcomes Research (ISPOR)’s Top 10 HEOR Trends for 2024–2025, patient-centered research is a recurring theme at the ISPOR 2025 conference (May 13–16, Montreal, Canada). A range of sessions will examine how the patient voice is being integrated across evidence generation, health preference research, clinical trial design, and health technology assessment (HTA), highlighting both current progress and areas for further development.

Selected sessions

Integrating the Patient Voice: Successful Models of Continuous Engagement Science That Advance Data Science and Drug Development

Date and time: May 14, 1:45pm – 2:45pm
Moderator: C Daniel Mullins (University of Maryland School of Pharmacy)
Speakers: DeJuan Patterson (Bridge Advisory Group LLC), Meaghan Krohe (Astellas Pharma US), Amy K O'Sullivan (Ontada)

This workshop will introduce continuous engagement science (CES), as defined by the PATIENTS Program, which promotes sustained, measurable collaboration between researchers and patient communities. CES focuses on building trust and ensuring that patient voices are meaningfully integrated into HEOR. The session will highlight practical approaches, including the Credible Messenger Approach framework and community advisory boards, and feature hands-on exercises to explore how CES can support more inclusive, patient-informed research, improve engagement, and enhance the value and impact of healthcare innovation.

Designing Equitable Measurement Frameworks That Are Community Centered: Why, What, and How?

Date and time: May 14, 5:00pm – 6:00pm
Moderator: Kimberly Richardson (Black Cancer Collaborative)
Speakers: Hala Durrah (The Humanization Matters Collaborative), Ysabel Duron (The Latino Cancer Institute)

This session will share practical strategies for fostering long-term, equitable engagement with underserved communities in HEOR. Drawing on work in cancer care advocacy, panelists will outline steps including shared agenda-setting, collaborative communication, and sustainable partnerships. Aimed at researchers with limited experience in community engagement, the session highlights tools to build trust, improve inclusivity, and address systemic barriers in healthcare research and delivery.

Health Preference Research Today: How Patient-Centered Is It and How Can It Be More Patient-Centric?

Date and time: May 15, 11:45am – 12:45pm
Moderator: Jessica Roydhouse (Menzies Institute for Medical Research, University of Tasmania)

Speakers: Siu Hing Lo (Acaster Lloyd), Angie Botto-van Bemden (Musculoskeletal Research International), Ryan Fischer (Foundation for Angelman Syndrome Therapeutics)

Bringing together researchers and patient advocates, this workshop will explore how health preference research (HPR) can better reflect patient priorities through more meaningful engagement. Panelists will present findings on current trends in patient-centricity, share real-world experiences from patient partners, and offer practical strategies to improve study design and reporting. Interactive polling and discussion will help attendees identify ways to enhance the patient voice in future HPR efforts.

When One Size Doesn’t Fit All: Incorporating the Child’s Perspective in Health Technology Assessment in North America

Date and time: May 15, 1:45pm – 2:45pm
Moderator: Feng Xie (McMaster University)
Speakers: A Simon Pickard (University of Illinois), Brittany Humphries (McMaster University), Jesse Elliott (Canada's Drug Agency)

As interest grows in better capturing the value of child and adolescent health, this panel looks ahead to how EQ-5D-Y valuation methods are evolving in Canada and the US. Panelists will explore methodological and normative challenges, stakeholder engagement, and implications for HTA. Attendees will gain insight into emerging approaches for incorporating the child’s perspective in health valuation and future reimbursement decisions.

The Evolution of Patient-Reported Outcome (PRO) Collection in Oncology: Will the Need for Multistakeholder Alignment Prevent Improved Patient-Centered Care?

Date and time: May 15, 3:15pm – 4:15pm
Moderator: Brittany Carson (ApotheCom)
Speakers: Abeer A Al Rabayah (King Hussein Cancer Center), Kristi Bertzos (Johnson and Johnson), Eva Villalba (Quebec Cancer Coalition)

This panel will examine the persistent challenges in integrating patient-reported outcomes (PROs) into oncology research and practice, despite growing interest in patient-centric care. Panelists will share perspectives from industry, clinical settings, and patients, highlighting the limitations of current PROMs and the need for more relevant, stakeholder-aligned tools. The discussion will explore barriers to adoption and identify potential strategies to improve the scientific evaluation of patient experience in oncology.

From MAR to SMART: Advanced Methods for Integrating Patient Preferences in Regulatory Science

Date and time: May 16, 10:00am – 11:00am
Moderator: Ellen M Janssen (Janssen Research & Development, LLC)
Speakers: Juan Marcos Gonzalez (Duke Clinical Research Institute), Marco Boeri (OPEN Health)

Focusing on patient-preference information, this workshop introduces maximum acceptable risk (MAR) and minimum acceptable benefit (MAB) – quantitative measures of patients’ risk tolerance. Participants will learn how to calculate and apply MAR, MAB, and SMARTs (simultaneous MAR thresholds) in regulatory contexts using interactive tools. Aligned with FDA guidance, the session offers practical skills to integrate patient perspectives into benefit-risk assessments for more informed decision-making.

Plenary Session: Balancing Speed and Scientific Rigor—Patient-Centered Methodologies for Surrogate Endpoints in Accelerated Access

Date and time: May 16, 11:30am – 12:45pm
Moderator: Elisabeth Oehrlein (Applied Patient Experience, LLC)
Speakers: Ebony Dashiell-Aje (BioMarin Pharmaceutical, Inc.), Chester Good (UPMC Health Plan), Yvette A Venable (AstraZeneca), Durhane Wong-Rieger (Canadian Organization for Rare Disorders)

The third and final plenary of ISPOR 2025 will explore how these intermediate measures can be made more meaningful for regulators and HTA bodies alike. As surrogate endpoints become more common, particularly in expedited approval pathways, this session will examine methods for validating them, incorporating patient input into endpoint selection, and striking the right balance between faster access and scientific rigor in both clinical development and real-world decision-making.

Latest research in patient centricity

In addition to these sessions, ISPOR 2025 will showcase an extensive selection of research posters.

The Role of Patient-Reported Outcomes and Patient Preference Information in Regulatory and HTA Decision Making

Date and time: May 14, 10:15am – 11:15am
Moderator: Tamas Agh (Center for HTA and Pharmacoeconomic Research, University of Pecs & Syreon Research Institute)

This Podium Session explores the latest research on how PROs and patient preference information (PPI) are shaping regulatory and HTA decision-making. Speakers will discuss emerging trends, ongoing challenges, and future opportunities to strengthen the role of patient input in advancing more transparent, inclusive, and patient-centered healthcare evaluations and approvals. Research includes:

• The Role of Patient-Reported Outcomes in US FDA Novel Drug Approvals and Reimbursement Decisions (2020-2024) – Jaideep K. Kaneria (Tata Consultancy Services)
• Inclusion of Health-Related Quality of Life (HRQoL) and Other Patient-Reported Outcomes (PROs) in Reimbursement Reviews From the Canadian Agency for Drugs and Technologies in Health (CADTH) – Nicole Fusco (Cencora)
• Requirements for Patient-Reported Outcome and Data Analytics in Health Technology Assessment in England, France and Germany, and Opportunities for Methods Harmonization across European Markets – Saeid Shahraz (Gilead Sciences)

Patient-Centricity in Oncology: From PROs to Endpoints

Date and time: May 14, 1:45pm – 2:45pm
Moderator: Carina Oedingen (University of Calgary)

Improving patient-centricity in oncology is the focus of this Podium Session, which will highlight studies that integrate PROs alongside traditional clinical endpoints. Presentations will explore how PROs can enhance understanding of the patient experience and inform more balanced treatment decisions in cancer care: 

• Patient Reported Adverse Psychosocial Outcomes and Identification of Predictive Factors in Those with Lymphoma or Chronic Lymphocytic Leukemia - An analysis of the Lymphoma Coalition's 2024 Global Patient Survey – Lorna Warwick (Lymphoma Coalition)
• The Landscape of Current Policy and Health Authority Positions on Intermediate Endpoints (IEs) for Clinical Outcomes in Oncology – Uwe Siebert (UMIT TIROL – University for Health Sciences and Technology)
• Development and Prospective Evaluation of the Bladder Utility Symptom Scale (Utility): A Novel Tool to Measure Utilities and Quality of Life in Bladder Cancer Patients – Douglas C Cheung (Princess Margaret Cancer Centre)

Other posters of interest include:

• Empowering Patients in Observational Research: Leveraging Data Insights for Sustained Engagement and Innovation – Clara C Hancock (PicnicHealth)
• Integrating Patient-Reported Outcomes in Clinical Care: Opportunities and Roadblocks from the Clinician Perspective: A Scoping Review – Grammati Sarri (Cytel)
• Development of New Patient Reported Outcome (PRO) Conceptual Models for Treatment Adherence and Satisfaction in People with HIV – Megan Chen (Gilead Sciences)
• Challenges and Opportunities for the Use of Patient Experience Data in Gene Therapy Trials – Sarah Ollis (Adelphi Values)
• Enhancing Methods to Explore Meaningful Change in Patient Interviews: A Case Study in Spinocerebellar Ataxia (SCA) – Naomi Suminski (Parexel)
• Development of a Conceptual Model of the Patient Experience with Idiopathic Hypersomnia: Patient Interviews from a Clinical Trial (NCT05156047) – Carrie K Presnall (Fortrea)
• Exploring Patient Preferences for Systemic Treatments in Psoriasis: A Review of the Literature – Christine Michaels-Igbokwe (Evidera)
• Enhancing Healthcare Quality through Patient-Centered Outcome Measures in Medicare's Merit-based Incentive Payment System – Uzma Pathan (University of Maryland)
• State of Inclusion of Patient-Centered Endpoints in Duchenne Muscular Dystrophy (DMD) Clinical Trials – Siri Bolding (Fortrea)
• Landscape Review of Patient Engagement in the Health Technology Assessment (HTA) Process in Latin America – Alejandra Murillo (Rutgers University)
• Comparison of Rare Disease Patient and Caregiver Perceptions Regarding Access to Disease Information and Interactions with their Healthcare Providers: Results from an International Survey – Siva Narayanan (Avant Health)
• Measuring Patient Engagement: The Importance of a Framework – Sarah Daugherty (Carelon)
• Landscape of Patient-Reported Outcomes Measures (PROMs) in Oncology Trials: Key Insights Into Patient Voice and Value – Trupti Dhumal (Apperture)
• Developing a Checklist for Patient Engagement in Rare Disease Value Research – Michelle (YuanYuan) Cheng (Center for Innovation & Value Research)
• Patient Perspectives on Communication With Clinicians: A Survey on Hospitalized Patient Experiences – Wael Saasouh (Wayne State University School of Medicine)

Coverage by The Evidence Base

The Evidence Base will be providing exclusive coverage of ISPOR 2025 (May 13–15, Montreal, Canada), including daily session highlights and in-depth features on all three plenaries. Register on The Evidence Base and follow us on LinkedIn to stay informed and up to date with the latest insights and developments from the conference.