Amy Price and Marilyn Mann on the pros of patient peer review

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Without peer review The BMJ could not survive. The journal uses reviewers to help assess the quality and usefulness of about 8000 papers per year. In early 2014, as one of a number of changes designed to make the journal more patient-centered, The BMJ announced that it would recruit patients to review research articles. The journal recognized that patients, especially those with serious or chronic diseases, often become knowledgeable about the causes, symptoms, and management of their own disease, or that of their family members. It is common for patients to pore over the latest research and share it on social media or on online communities.

The public at large is the end user of any healthcare intervention thus making it imperative that evidence guiding the use of healthcare interventions is relevant and useful to them. However the public, in general, is an underutilized source of research knowledge even though their practical input can build bridges and reduce barriers as well as influence the speed at which evidence is adopted into practice. A recent review shows patient experience to be positively associated with effectiveness when it is integrated with the research. Studies show that we learn more completely when the materials we use provide an interactive way to solve a problem or provide feedback. There is every possibility that patient reviewers can be influential agents of change for good at The BMJ.

Many patients wish to give back by advocating for better research and treatment for their disease or that of their family member, but may find it hard to commit to a time-consuming or long-term project. By signing up to review papers in a specific area, patients have the flexibility to say yes or no to reviewing a paper, which would usually take a few hours within a two week period. Both of us are patient reviewers, and enjoy the intellectual challenge of thinking about the purpose, methods, and results of a study, and reporting on whether we think the research will be helpful to patients and physicians. At times this may mean pointing out areas the authors have not considered and could lead to new directions for research. Reviewing confirms that research is hard work and goes much slower than anyone wants it too. As patients we can share where our priorities differ from the research being done and may even find researchers whose work we want to follow.

No background in science or medicine is required to become a patient reviewer. The study will also be peer reviewed, so patients do not need to worry about missing technical details. The BMJ is interested in perspectives on the study from the point of view of a patient or carer.

Here are some quotes and questions by patient reviewers.

“The one thing I am looking for is empowerment of the patient.”

“How do we adapt the language of ‘medicine’ from formal and technical to one that can be appreciated by all?”

“It was hard to review because I was a little scared but I learned a lot and would do this again.”

“As patients we are at the bottom of the pyramid in every possible way, even though we are the heart of medicine.”

“Although I have agreed to attempt this review, I feel very strange and yet, if this conversation really heralds a change between medicine and the patient, then I shouldn’t falter. But does it? Medicine has been practiced formally for centuries and patients are still vulnerable, helpless and easily intimidated.”

“It is wonderful to have open access to The BMJ for a year as a thank you for doing a review.”

“I learned more about research and why methods matter, learning to review helped me to be able to tell good science from marketing in the magazine headlines and on the internet.”

The sharers of these thoughts gave written permission to use the anonymized quotes that were sourced from Facebook, Linked In, and email correspondence.

Citizen reviewers can bring to the table added depth and practical insight to research, education, and analysis articles. They can lend their voices to identify gaps and shape priorities in research through communicating their understanding and experience to authors, researchers, and clinicians. The research and evaluation process will also shape these factors in the lives of citizens as they learn from researchers. This provides an unprecedented opportunity for co-created meaning, shared values, and dynamic change in research production. The BMJ is giving patients an opportunity to have a real voice in shaping the way researchers and clinicians act, and to further their understanding on what is most important to, and of benefit to patients.

See also:

Competing interests: None declared.

Amy Price is developing PLOT-IT (Public led online trials—infrastructure and tools as her doctoral project in evidence based healthcare at the University of Oxford. She is a Neurocognitive rehabilitation consultant and a director of ThinkWell. Her goal is to build bridges between science, healthcare, and the public. She is a patient reviewer. Follow her on Twitter @AmyPricePhD

Marilyn Mann is a retired lawyer, patient advocate, blogger, and breast cancer survivor. Her daughter was diagnosed with familial hypercholesterolemia (FH) in 2001. Marilyn participates in an online community of FH patients and their family members, responding to questions and providing support. She is a member of the editorial board of Circulation: Cardiovascular Quality and Outcomes, the first patient advocate to serve in that capacity for an American Heart Association journal. Her work for the journal includes managing the journal’s Twitter account and editing the journal’s patient or caregiver viewpoint section. Follow her on Twitter @MarilynMann

 

  • Deb

    I love the process, thought, and intentions stated in the article! It is a very exciting step in patient engagement and empowerment!