Intended for healthcare professionals

Editorials

Patients’ roles and rights in research

BMJ 2018; 362 doi: https://doi.org/10.1136/bmj.k3193 (Published 25 July 2018) Cite this as: BMJ 2018;362:k3193

Further actions are required to enhance patient engagement in research, service improvement and audit.

We have read the article of Dr Paul Wicks et al. with interest, and the BMJ is to be congratulated for introducing initiatives to enhance patient engagement at all stages of the research process and we hope that journals and other medical media will do the same.

Every organization has to comply with research governance--i.e. systems and processes that ensures that research is conducted according to the expected standards and regulations (1). A prominent part of this process is safeguarding patient rights and confidentiality and the need to obtain patient consent. However, engagement of patients in research procedures does not effectively appear to be part of the aim of this governance requirement. It is imperative, therefore that this engagement is embedded in this process.

When patient and public engagement is being pursued, governance appears to be done through certain groups or committees,such as those based in hospital settings and in community settings. Inevitably, the same individuals would be consulted resulting in systematic bias. It would be more inclusive and effective to widen the engagement by involving members of the public more than just members of hospital/healthcare organization committees in order to further optimise this process. Also it is important that members from the public who are being consulted are trained or undergo some form of brief induction in order to further assist them to offer their views and expectations. Needless to say that consultation with patients must encompass all stages of the research pathway.

There are the patient expert groups such as the diabetes group, congenital cardiomyopathy group, MRSA support group, etc., who are also well placed to engage and advice on patient matters within the context of research but at a more informed level.

In healthcare organizations in the State of Qatar, the emphasis of involving patients in research initiatives is well made. An example is the inauguration of the Qatar Metabolic Institute that is tackling public health priorities which are similar to other countries, namely diabetes, obesity and other related illnesses (2).The Institutional Review Board will also ensure that research projects incorporate patient engagement (3).

Any venture of increase awareness of prevention of illness and promotion of health and well-being must include patients and the public to have the opportunity to influence research and development including prioritization of them.

Finally, patient and public engagement needs to also apply on projects to do with service improvement and audit applying the same principles and rigueur as those applied in research.

1. https://www.hra.nhs.uk/planning-and-improving-research/policies-standard...
2. https://www.hamad.qa/EN/Education-and-research/Academic-Health/News/2016...
3. https://www.hamad.qa/EN/Education-and-research/Medical_Research/IRB/Page....

Competing interests: No competing interests

20 August 2018
Walid Al-Wali
Consultant Medical Microbiologist and former Executive Medical Director.
Manal Hame, Specialist Medical Microbiologist, Al-Wakra Hospital, Dr Godwin Wilson, Specialist Medical Microbiologist, Al-Khor Hospital, Anand Deshmukh, Specialist Medical Microbiologist, Hamad General Hospital, Doha, State of Qatar
Hamad Medical Corporation,Doha,Qatar.State of Qatar.
Section of Medical Microbiology, Hamad General Hospital, Hamad Medical Corporation, PO Box:3050, Doha, State of Qatar