Intended for healthcare professionals

Rapid response to:

Editorials

The BMJ’s own patient journey

BMJ 2014; 348 doi: https://doi.org/10.1136/bmj.g3726 (Published 10 June 2014) Cite this as: BMJ 2014;348:g3726

Rapid Response:

Re: The BMJ’s own patient journey

LET THEM REVIEW

We live in a digitally connected world where approximately 50% of research papers are open access and freely downloadable [1], however these papers come without instructions or quality assurance stamps that patients could recognize.

One of the greatest challenges I have witnessed is the plight ignorant passionate patients who are exploited by those without integrity. One brilliant solution is “Let them review”

No option patients and those bombarded with the stress of a failing pain ridden body can become participants in research trials without knowing whether a trial is well run, ethical or even if it will ever be published [2]. Patients can be confused, vulnerable and unsure of how to switch roles between patients and participants.

There has been little opportunity for patients themselves to discern between safe and ethical research. Teaching the public how to read a paper and to use the BMJ tools for equipping patients to review research restores the power and autonomy to the patient. This could lead to improved research safety and greater quality of life for the public everywhere. Through participatory discussion and reviewing the public can provide the opportunity to engage background knowledge with real life problem solving.

It would be wonderful to see patient reviewers sharing their experience and the comparisons recorded between what they see in a paper before and after training and how their contributions differ from traditional reviewers. It is my impression from working with patients that their insights will be impressive and they will add dimensions and practicalities that may be missed by other reviewers. We will learn from each other.

Healthcare providers, academics and scientists may be unable to keep up with the present rate of health care research which doubles every 19 years. There are 75 new trials and 11 systematic reviews produced daily [3]. At the current rate health research could outstrip medical school learning and become outdated during the lifetime of clinical practice [4].

I hope for a future where trained patient reviewers could mentor others, infiltrate existing patient advocacy groups and develop research protocols with the general public and quantified-self participants. This inspiration for informed reviews could spread across cultures and be an agent for change to facilitate communication between research, science and health care.

Thank you BMJ for the wheels you have set in motion for real empowerment.

Amy Price has lived on all sides of this question after suffering significant trauma including traumatic brain and spinal injury. She is now a DPHIL student in Evidence Based Health Care at the University of Oxford where she works on the development of PLOT-IT Public Led Online Trials Infrastructure and Tools where the public can collaborate on building research trials on topics of interest to them. Amy can be contacted at http://ithinkwell.org

References

[1] Van Noorden R. Half of 2011 papers now free to read. Nature. 2013 Aug 22;500(7463):386-7.

[2] Gøtzsche PC. Why we need easy access to all data from all clinical trials and how to accomplish it. Trials. 2011. p. 249.

[3] Bastian H, Glasziou P, Chalmers I. Seventy-five trials and eleven systematic reviews a day: how will we ever keep up? PLoS Med [Internet]. 2010 Sep [cited 2013 Aug 16];7(9):e1000326. Available from: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2943439&tool=p...

[4] Price A, Biswas T, Biswas R. Person-centered healthcare in the information age: Experiences from a user driven healthcare network [Internet]. European Journal for Person Centered Healthcare. 2013 [cited 2014 Apr 30]. p. 385–93. Available from: http://ubplj.org/index.php/ejpch/article/view/766

Competing interests: No competing interests

14 June 2014
Amy Price
Nuerocognitive rehabilitation/research
University of Oxford
5 Montagu Crescent Edmonton UK N182HA