BMJ Editorial: Clarifying the roles of patients in research

Indigophoton · Apr 12, 2018

Common misunderstandings are a barrier to real progress

The term “patient” no longer denotes a passive recipient of healthcare. Patients have demanded, and are increasingly given, the opportunity to influence health services and policies.1 Similarly, in health research patients are sought as partners in study design and governance.2 This is reflected in The BMJ’s patient partnership initiative (www.bmj.com/campaign/patient-partnership),3 the Patient-Centred Outcomes Research Institute (PCORI) in the US,4 and the National Institute for Health Research (NIHR) in the UK.5

Because of the history of (un)ethical conduct in research, including patients as partners in research studies requires clarity about what the role includes. Patients’ roles must be defined so that we achieve meaningful patient partnership and well conducted, ethical research.

“The patient” is a construct that assumes an inherent imbalance of power and includes expectations of compliance by those inhabiting it.6 That it has taken so long to acknowledge the value patients bring to healthcare and research emphasises just how difficult it can be to broaden their role beyond passively receiving treatment.
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https://www.bmj.com/content/361/bmj.k1463

Jonathan Edwards · Apr 12, 2018

Twaddle again I would say.

How about this bit:

To avoid conflation of roles, all stakeholders should agree role descriptions at the beginning of a research study. This can help clarify expectation in large multidisciplinary teams for all research partners.

Yes, it should be made clear that the role for this lot is to say 'thank you very much we feel so much better' and the role for that lot is to say that they feel much the same.

Why on earth should roles for patients be defined in some anal fashion so that professors of health care whatsisname can feel magnanimous and erudite (ahem)?

Patients with ME do a lot better than that.

Sean · Apr 13, 2018

Exactly.

I reserve the right to be an uncooperative bastard patient.

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BMJ Editorial: Clarifying the roles of patients in research

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Jonathan Edwards Senior Member (Voting Rights)

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BMJ Editorial: Clarifying the roles of patients in research

Indigophoton Senior Member (Voting Rights)

Jonathan Edwards Senior Member (Voting Rights)

Sean Moderator Staff Member

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