Exploring the Patient Experience Dossier

By: Lillian Witting, MPH, Coordinator, Research, Education, & Programs

It is often a challenge to identify one source that consolidates health data from various resources for decision-making. Research on patient experience, outcomes, and impacts is often collected through patient-focused drug development-related efforts, measure development, patient registries, and qualitative research. Although this information is important for patients, their families, and caregivers, the data is spread across multiple sources to include the peer-reviewed literature, white papers, or unpublished manuscripts and projects which create inconsistency and disorganization. To identify a better way to efficiently communicate patient experience data to various health care stakeholders, the NHC brought together several patient groups to socialize the idea of a patient dossier template.

A patient dossier is a comprehensive and concise report containing clinical and economic evidence and information. It is usually a living document that evolves and is continuously updated when new evidence and information becomes available. In utilizing this concept, a patient experience data dossier would allow patient groups to consolidate disease-specific data from various sources. It can also help facilitate comparison across disease with like conditions. A consistent format and same terminology could also be beneficial for communication between pharmaceutical, biotechnology, and health care decision-makers.

A discussion was held on December 1, where patient groups were asked about the feasibility and usefulness of a disease-specific dossier. The discussion was also centered on patient priorities, how desired outcomes may change over time, socioeconomic impact on available treatments, and what information would be included.

Some concerns that emerged were challenges to implementation and operations including staff knowledge and updating the dossier. Suggestions to address these concerns involved scientific and medical advisory committees, training and writing retreats, summer internships and fellowships for students, and increasing partnerships with other organizations. There was an overall positive reception to the patient dossier, which makes it a potential project in the future.

This project was sponsored by Pharmaceutical Research and Manufacturers of America (PhRMA), an NHC member.