Editor’s Note: Thanks Jill for all your work on this project:
In the two years spanning Planetree’s project to understand how patient-family advisory councils (PFACs) engage in research, we have come to understand some of the key barriers experienced by patients and family members. This project, which was funded by an Engagement Award through the Patient-Centered Outcomes Research Institute (www.pcori.org) involved focus groups with more than 21 PFACs around the country in a variety of healthcare settings (ie.- hospitals, nursing homes, drug rehab treatment centers, behavioral health communities, outpatient surgery centers, etc.).
What we learned is that patients and families still exist on the periphery of healthcare research. That is, research undertaken to improve their lives, decision making, and health outcomes is often inaccessible to them. Published research is made available through subscriptions to medical journals that are not affordable for individual consumers. For example, one patient described finding a research article that she thought could help her understand her treatment options, only to discover that she was unable to see more than the abstract. “If I wanted to read the entire thing, which I did….it was going to cost me $49 to buy it. I don’t have that kind of money.”
When consumers were able to access publicly available research findings, they described being overwhelmed with jargon and statistical analyses that were difficult to understand. “Maybe there should be some kind of summary for patients that tells us what the research was about and how we can use the information,” suggested a patient. Some funding agencies, such as PCORI, and research journals are starting to require consumer-friendly summaries from researchers, but they are still the exception, rather than an industry rule. PCORI is focused on supporting “research done differently.” Patients and families in our project agree that the time has come.
Note: Well said.