Including the Patient Perspective in Health Care Decision Making

Glasgow, Scotland, UK—8 November 2017—ISPOR, the professional society for health economics and outcomes research (HEOR), held a number of sessions focused on patient engagement at its 20th Annual European Congress in Glasgow, Scotland, UK.

Patient-Powered Registries
On 6 November, a workshop on “Patient-Powered Registries: Useful for Health Technology Assessment or Not?” [W2] was held. Discussion leaders included, Gurmit Sandhu, B Pharm (Hons), MBA, MPH, Gurmit Sandhu Consulting GmbH, Basel, Switzerland; Elisabeth M. Oehrlein, BA, University of Maryland School of Pharmacy, Baltimore, MD, USA; Robert N. McBurney, PhD, Accelerated Cure Project for MS, Waltham, MA, USA; and Chantal Guilhaume, PharmD, Haute Autorité de Santé, Saint-Denis La Plaine, France. Patient-powered registries provide an emerging data source that collect information directly from patients on a specific disease or condition. Speakers discussed the possible applications of patient-powered registries to health technology assessment bodies.

Patient-Centered Decision Making
On 7 November an issue panel, “Patient-Centered Decision Making: How Do You Generate Relevant Patient-Reported Outcomes Evidence for Chronic Disease Management and Market-Access Decision Making?” [IP14], was held. The moderator for the panel was Finn Børlum Kristensen, MD, PhD, University of Southern Denmark, Hilleroed, Denmark. Panelists included, Katharine Barnard, PhD CPsychol AFBPsS, Bournemouth University, Poole, UK; Simon O’Neill, REG.N., Diabetes UK, London, UK; and Francois Meyer, PhD, Haute Autorité de Santé, Saint-Denis, France. The panel discussed the practical aspects of generating and synthesizing patient-reported outcomes, considering that their use in health care decisions can be controversial.

Incorporating the Patient Voice in the NICE Process
On 8 November an issue panel was held that discussed, “Can the Patient Voice Be Better Incorporated Into the National Institute for Health and Care Excellence (NICE) Process?” [IP19]. The panel was moderated by Eric Low, NA, formerly of Myeloma UK, East Lothian, UK. Panelists included Jennifer Lee, MBA, Janssen UK, High Wycombe, UK; Heidi Livingstone, BA, NICE, London, UK; and Richard Jackson, PGCE, NPQH, a patient expert in the UK. Most global health technology assessment bodies have not yet formalized how patients have input in health care decision making. The panel discussed how the recent NICE consultation on public and patient input may offer an opportunity to increase patient engagement in the NICE process.

Incorporating the Patient Perspective Into Health Technology Assessments
On 8 November an issue panel entitled, “How Do You Incorporate the Patient Perspective Into Health Technology Assessments? Defining Best Practices for Rigorous Scientific Evidence and Impactful Submissions and Reviews” [IP23] was held. Judith Leah Rubinstein, MIA, Context Matters Inc., New York, NY, USA moderated the panel. Panelists included Paola Kruger, MA, Accademia dei Pazienti/EUPATI Italia, Rome, Italy; Ken Bond, MA, CADTH, Ottawa, ON, Canada; and Laure Delbecque, PhD, Pharmerit International, Rotterdam, The Netherlands. Increasingly, health technology assessment (HTA) bodies are seeking to include patients as key stakeholders in the HTA review process. Currently, however, no standard methods to obtain patients’ perspectives are agreed upon. This lack of a standardized method for data collection results in evidence that may be anecdotal, not meaningful, or difficult to interpret. The panel, representing a variety of perspectives, discussed the quality and value of patient testimonials as evidence.

The Society has a number of initiatives centered on patient involvement in health care decision making. ISPOR’s Patient Representative Roundtables, held in Europe, North America, Latin America, and Asia-Pacific, seek to provide a platform for patient representatives to interact with other health care stakeholders and to determine how best to engage patients in the research and decision making processes. The ISPOR Patient Centered Special Interest Group works to facilitate the involvement of patient representatives in all stages of research and decision making to improve health care, its delivery, and outcomes.

Additional information on the ISPOR 20th Annual European Congress can be found here. Released presentations from the congress can be found here. Interested parties can follow news and developments from the congress on social media using the hashtag #ISPORGlasgow.



ISPOR, the professional society for health economics and outcomes research (HEOR), is an international, multistakeholder, nonprofit dedicated to advancing HEOR excellence to improve decision making for health globally. The Society is the leading source for scientific conferences, peer-reviewed and MEDLINE-indexed publications, good practices guidance, education, collaboration, and tools/resources in the field.
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