Patients and their families are advocating for their right to access the latest medical research papers to help find potential treatments and understand health conditions. Yet, many research articles cost an average of $35 each or require a membership in order to access the database to read them.
This is particularly burdensome for families with loved ones who have rare diseases and are already paying substantial medical fees.
Although there are ways around the system like contacting the lead study investigator to obtain a copy of the article or heading over to a local library that has a subscription to the research database, these options can be time-consuming for families who feel like they are already fighting against the clock.
“It is patients who make new research findings possible through their participation in studies,” said Jean Slutsky, chief engagement and dissemination officer at the Patient-Centered Outcomes Research Institute (PCORI) in Washington, DC. “Patients and their caregivers are the true end-users of research results. They need research findings to help make informed decisions about their care and to share fully in making these decisions with their healthcare providers.”
Scientific publishing companies and the research community have been at odds over this issue for years. The company Elsevier, for example, took 40% of its income as profit last year. Academics have found this particularly unsettling because much of its research is dependent on taxpayer dollars.
With calls for open access, the patient-centered research trend is growing. JAMA dedicates a portion of its site to clinical articles with less jargon and more accessibility to the public. PubMed Central also offers millions of pieces free for readers.
PCORI, a group dedicated to funding research to help inform patients of everyday healthcare decisions, has been working to help alleviate some of these obstacles. They provide funding for open access, peer-reviewed articles so anyone can access the information. They are also helping patients and their families synthesize research studies into digestible abstracts.
“Journal articles and research reports are usually written by and for clinical and scientific audiences and contain scientific language and graphs that can be difficult for laypeople to understand fully,” said Ms Slutsky. “PCORI is therefore developing two easier-to-use abstracts of about 500 words each on results from all the studies we fund. One of these abstracts is written for laypeople and the other is for clinical professionals.”
Mak A. Who gets to read the research we pay for? Slate. August 21, 2018. https://slate.com/technology/2018/08/who-gets-to-read-the-research-taxpayers-fund.html. Accessed September 19, 2018.