The power of the patient voice in scientific peer review
Scientific peer and merit review is a vital part of the research process.
Peer review is the evaluation of scientific work by subject matter experts from the same or a related field. Peer review is used to evaluate proposals to conduct scientific research, ongoing research or a submitted paper based on ongoing or completed research.
Subject matter experts are selected to evaluate, comment on and score proposals based on their knowledge of the subject and understanding of the impact each proposal would make if funded.
From the outside looking in, you would expect to see physicians, biostatisticians, nurses and a variety of scientists involved in the peer review process. Some peer review panels may also include patients or survivors of the very health conditions being discussed by panel members.
These panelists come by several names: patient reviewers, consumer reviewers, advocate reviewers or stakeholders.
Finding these types of reviewers is a challenge, but Research Associates Jen Tucker and Ann Gonzalez are among ORAU’s peer review team who work to find this special category of reviewers.
“For a disease such as diabetes, we can identify scientists and other stakeholders by looking at universities, hospitals and organizations or nonprofits that work with that condition and look for contacts,” Tucker said.
Recruiting patient reviewers is more challenging.
“We look at newspaper databases, blogs, social media and other resources to find people who are talking about their illnesses or their conditions publicly online,” Tucker said. She adds that this type of recruitment is interesting, new and different from the types of reviewers ORAU typically recruits.
Tucker and Gonzalez don’t do this recruitment alone. Their agency customer has an entire office dedicated to patient reviewer engagement.
Like scientific reviewers, patient reviewers are trained and provided with resources such as a manual that explains how the peer review process works, including examples of good and poorly written research critiques. New reviewers also are assigned a mentor to work with them on how to write their critiques.
The role these reviewers play is critical to ensuring the patient voice is heard before a research proposal goes from laboratory bench to clinical practice. Patient reviewers share the potential impact, positive or negative, that a research proposal under consideration could have on people experiencing the condition in question.
Patient centeredness—the notion of providing care that is responsive to an individual patient’s preferences, needs and values—is an important consideration for many research proposals involving direct treatment.
“It’s not just a question of ‘is this good science?’ but are researchers reaching out to patients and using the knowledge they gain appropriately,” said Keri Cagle, Ed.D, Director of Scientific and Technical Resources Integration.