When Heather Siefers visits her doctor to discuss her Multiple Sclerosis (MS), her doctor will tell her about the data from her lab tests and measures such as her liver function, blood pressure and weight. However, Siefers asks: shouldn’t data on quality of life indicators be captured alongside clinical data? She is also interested in capturing data on how long she has slept (or not slept) and how often she experienced numbness in her legs or memory fog.
This critical question about the types of data most important to patients as well as other important questions were explored in-depth when Siefers, a patient representative on PCORnet’s Data Committee, joined other patients and researchers last week at Health Datapalooza, an event held in Washington, D.C. that brings together a diverse audience of over 1,600 people from the public and private sectors to learn how health and health care can be improved by harnessing the power of data.
The National-Patient Centered Clinical Research Network (PCORnet), a PCORI initiative committed to furthering people-centered research and driving meaningful patient outcomes, hosted a panel discussion at the conference: “PCORnet, a PCORI Initiative: Integrating the Patient’s Voice in Data Network Development.” This session featured:
- Siefers, who is also a Board Member of PCORnet’s iConquerMS Patient Powered Research Network
- Jim Uhrig, a member of the Executive Committee for PCORnet’s PaTH Clinical Data Research Network and a survivor of idiopathic pulmonary fibrosis
- Lewis Raynor, co-lead of the PCORnet Health Disparities Collaborative Research Group (CRG), and;
- Lesley Curtis, lead of the PCORnet Coordinating Center’s Distributed Research Network Operations Center, who moderated the session.
This session addressed how to incorporate the patient voice in data sharing and data governance while developing a collaborative research experience.
Uhrig discussed the patient role in creating the My Path Story Booth Project, a project modeled off of NPR’s StoryCorps, which allows patients and caregivers to record a conversation to share with researchers so they can better understand peoples’ experiences with health and illness.He also discussed patient involvement with PATH’s Network Protocol Review Committee, which facilitates a single Institutional Review Board (IRB) process for patient-centered research involving multiple health systems. An IRB is a type of committee used in research that formally approves, monitors, and reviews biomedical and behavioral research and assures that the rights and welfare of participants in studies are protected.
This committee includes a patient representative and investigator from each of the PaTH institutions. Patients and investigators discuss how research norms differ across institutions and help to promote learning by IRB staff at participating sites as well as suggest protocol improvements.
Raynor discussed the role of the CRGs in developing a patient-centered data infrastructure for PCORnet. The Health Disparities CRG focuses data infrastructure development on elements in the PCORnet Common Data Model (CDM) that pertain to social determinants of health, including ethnicity and race, and works to propose additional elements to the CDM that would facilitate research on safety net and vulnerable populations. Patients are involved at every level of decision-making for this CRG.
Siefers spoke about her role on the PCORnet Data Committee, which oversees PCORnet’s data network and advances informatics and research data innovations that support PCORnet’s goals. Although professionally she has experience collecting and analyzing data as a microbiologist, she came to her role on the PCORnet Data Committee with no experience coding data. After an initial learning curve of feeling like she did not understand her role, Siefers now recognizes that her contribution is not in the design of a data system but making sure the patient “voice” is incorporated into the data system design and that it supports the PCORI mission. Posing questions about the importance of quality of life data is one example of why the patient voice is crucial throughout PCORnet governance.
Lesley Curtis served as a moderator, posing and fielding questions for panelists. Curtis and other PCORnet leaders also spent time at Health Datapalooza meeting with government and industry representatives at a breakfast session which highlighted how PCORnet and its Front Door can help advance patient-centered research.
The panel discussion and networking opportunities at Health Datapalooza offered PCORnet the opportunity to highlight the important role of patients throughout the research process and to further its mission to enable people to make informed healthcare decisions by efficiently conducting clinical research relevant to their needs.
You can follow the discussions at Health Datapalooza on twitter using the hashtag #hdpalooza.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.