Nothing about me without me
(Valerie Billingham, 1998)
In 1998, Valerie Billingham coined the phrase, ‘nothing about me without me’ . This phrase simply means that patient views should be considered in any decision that impacts their health and forms the basis for shared decision-making in healthcare.
This idea has expanded to patient and public involvement in health care, a concept that is gaining momentum across the world. Patient and public involvement is common in research and is defined as ‘research carried out with or by members of the public rather than to, about or for them’ . In this respect, as medical practitioners, we should consider patients as our partners in developing research and improving health services. Involving patients and members of the public in health research can provide a different perspective because of their personal experience with a service or an illness . Patients and the public can help researchers identify the best questions to ask, shape projects, identify the most acceptable methods used to explore a topic and help with the dissemination of findings . This, in turn, may help us produce high quality, relevant research while also empowering patients and the public.
More recently, patient and public involvement have extended to scientific journals . The British Medical Journal (BMJ) is leading the way in co-producing journals with patients . The BMJ now has patient peer reviewers, a patient editor and patient-led series. The Caribbean Medical Journal not only supports this initiative but also wishes to implement this in the local setting with the introduction of CMJ Reflections, a series that encourages patients, carers and clinicians to write about their personal experiences of living with illness, caring for those with illnesses as well as their experiences of health services in the Caribbean. The series will include a special collection of articles highlighting specific common diseases in the Caribbean. In this series, physicians, nurses, patients and caregivers are invited to write about their personal experiences in managing the illness. The series will also have a separate section for authors to write about general experiences in the health system. The CMJ editorial team believes that there is value in involving and engaging patients to address health services concerns and we encourage patients, clinicians and health researchers in the Caribbean and other developing countries to join us in promoting patient and public involvement in health care.
We hope this endeavour will be a catalyst to motivate health care leaders to partner with patients to co-create our health systems and that researchers will be inspired to collaborate with patients and the public to develop meaningful, high-quality research, producing evidence that is valuable to all. It is our hope that patient partnership will become an essential component of strengthening health systems and improving health services in the Caribbean.
- Barry MJ, Edgman – Levitan S. Shared Decision Making- The Pinnacle of Patient-Centered Care. New England Journal of Medicine. 2012; 366(9): 780-781
- National Institute of Health Research. INVOLVE. What is public involvement in research? 2019. Available from: https://www.invo.org.uk/find-out-more/what-is-public-involvement-in-research-2/ (Accessed 2019 December 29)
- National Institute of Health Research. INVOLVE. Briefing notes for researchers: public involvement in NHS, public health and social care. 2012
- Richards Tessa. The BMJ’s own patient journey. BMJ. 2014. 348