Shared Decision Making: essential but hard to measure

Richard Lehman, Professor of the Shared Understanding of Medicine at the University of Birmingham, reflects on the latest Cochrane evidence on shared decision making and what might be needed to see it become a reality in all health care settings.

Shared decision making is a good thing. Here is how the authors of an updated Cochrane Review on Interventions for increasing the use of shared decision making (SDM) by healthcare professionals put the argument:

“Shared decision making is said to be desirable because patient involvement is accepted as a right and patients in general want more information about their health condition and prefer to take an active role in decisions about their health.”

So that’s three reasons:

  1. SDM is a human right. This is an absolute statement. Our bodies belong to us: in fact they are us. Any decision about them to needs to have our informed consent. “Nothing about me without me” was a principle declared by the NHS about a decade ago, and it remains valid though not always adequately implemented.
  2. Patients in general want more information about their health condition. This is a less absolute statement, and rightly so. Patients vary a lot in how much and what sort of information they want, and finding out about their individual preference for knowledge is actually part of the professional’s role in shared decision making. This applies to diagnosis as well as treatment options.
  3. Patients prefer to take an active role in decisions about their health. This may or may not be true of each individual and each decision. The offer of an active role needs to be explicit (that’s the human right issue) but there is no compulsion for the patient to shoulder the burden of each decision. “That’s why I’ve come for your opinion, doctor” is a perfectly valid response: so is “I need more information and time to think about it and talk to my family”. Shared decision making does not imply that every consultation must consist of throwing information at the patient in order to end with a definitive joint answer.

The authors go on to say that “The aim of this review was to find out if activities to increase shared decision making by healthcare professionals are effective or not. Examples of these activities are training programs, giving out leaflets, or email reminders. Cochrane researchers collected and analyzed all relevant studies to answer this question, and found 87 studies.”

That is an awful lot of studies trying to cover a very varied group of activities intended to increase shared decision making. The reviewers include several of the most prominent and long-standing advocates of SDM, and they must have been sad to reach this conclusion at the end of their efforts:

“It is uncertain whether any interventions for increasing the use of SDM by healthcare professionals are effective because the certainty of the evidence is low or very low.”

Lots of questions, few answers

So full marks for effort and honesty, but where does that leave us? Certainly with lots of questions and few answers, which is deeply frustrating at a time when SDM is being increasingly advocated as a fundamental principle in all health systems. If we don’t know how to promote it, how can we hope to see it become a reality in all health care settings?

In fact this Cochrane Review can be seen more as a reflection of the muddled state of research in the field than of failure to progress. The broader social movement for greater patient autonomy and open health knowledge is unstoppable, and what we see here is an attempt to capture the small part of it that gets published in the medical literature in the form of interventional trials. This is valuable, but as much for proving the limits of the Cochrane method of systematic reviewing (if I may dare say that in a Cochrane blog) as for the downbeat conclusion it reaches about the quality of the evidence. Complex culture change cannot be adequately measured by looking at simplistic interventions with inadequate outcome metrics.

Shared decision making needs more than just knowledge

Cochrane Reviews play a great role in the generation of evidence about medical interventions, and they often form the best knowledge foundation for shared decision making in clinical practice. But knowledge is just one element of SDM. For clinicians to share decisions effectively, they also need a different attitude towards their role, they need a new set of skills, they need better and more adaptable tools, and they need to be provided with the structures and the environment where real personal communication and sharing become possible.

I don’t believe that progress in SDM can be usefully measured by looking at time-limited simple interventions in any one of these areas. If we really believe that shared decision making is a human right, and not some unreachable Platonic ideal, we need to teach it in schools, embody it in shared knowledge tools for patients and clinicians, make it a skill for lifelong learning, and design our health system to promote it. All these things are beginning to happen.

Join in the conversation on Twitter with @RichardLehman1 @CochraneUK or leave a comment on the blog.

Link:

Légaré FAdekpedjou RStacey DTurcotte SKryworuchko JGraham IDLyddiatt APoliti MCThomson RElwyn GDonner-Banzhoff NInterventions for increasing the use of shared decision making by healthcare professionals. Cochrane Database of Systematic Reviews 2018, Issue 7. Art. No.: CD006732. DOI: 10.1002/14651858.CD006732.pub4.

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Richard Lehman

About Richard Lehman

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Richard Lehman, MA, BM, BCh, MRCGP, is Professor of the Shared Understanding of Medicine in the Institute of Applied Health Research at the University of Birmingham. He was a general practitioner in Banbury for 37 years. For the last 20 years he has also written a weekly summary of articles from the principal medical journals which was posted on the BMJ website. After retirement from full-time general practice in 2010 he worked initially on studies of patient experiences, and spent a year at Yale University working on patient-centred outcomes and helping to set up the Yale Open Data Access (YODA) project. He remains a consultant to the group. He is on the steering committees of the NICE shared decision making initiative and Academy of Medical Royal Colleges Choosing Wisely group. He was guest editor for the Sharing Medicine series in JAMA Internal Medicine (Sep 2017).

3 Comments on this post

  1. In order to address the obvious limits of the Cochrane method which always point to a plethora of low quality evidence, I have a proposal. I have posted the same proposal as a comment on three recent Cochrane reviews.

    I would like to challenge Cochrane authors to go a step further from the implications for research section and design the perfect trial to answer the review question. I propose the publication of an open-access primary research protocol as a standard section of all Cochrane reviews.

    With the knowledge about the strengths and weaknesses of previous research gained through writing and updating a review, a structured protocol for a future trial written using the SPIRIT reporting guidelines would be feasible in a relatively short time.

    I accept that it’s useful to point out the flaws in previous research which limit confidence in existing evidence. All Cochrane reviews do this. It would be more constructive for Cochrane to use the considerable methodological expertise of its authors, and its commitment to patient and public involvement to help future researchers do better quality primary research. This would distinguish Cochrane from all other producers of systematic reviews.

    Primary research protocols would be more useful and constructive than a further review update. There would be huge added value in a protocol for primary research explicitly linked with the uncertainty revealed by a recent and important Cochrane review.

    Cochrane could also take this opportunity to prove its commitment to patient and public involvement in research by involving patients and the public in the design and development of the protocols including selecting patient-centred outcomes, intervention selection or development, devising pragmatic methods of data collection, participant recruitment and retention.

    Prerequisites for use of these protocols by research teams would be open access publication of the results, adherence to reporting guidelines such as CONSORT and GRIPP2 for reporting patient involvement, and data sharing. The protocols themselves could be published in an open access database.

    This database would be of significant interest to funders who all need assurance that the funds they award go to well-designed research studies of clear relevance to patients and carers. Assuming the protocols were adhered to, the risk of bias would be low across the board, and easy access to the data would facilitate inclusion in future updates of the reviews.

    Caroline Struthers / Reply
  2. “Shared decision making” seems no more than a conceit of a faction struggling to retain some control of the clinical process in the face of EBM and the progressive empowerment of patients. It represents at best the fond hopes of a disappointed (and disappointing ) minority of doctors. Decision making, at any level above the technical/operational, in the hands of mature doctors is in the hands of the patient. The patient brings information on their illness, we listen, inquire further, offer advice on how to relieve current distress and improve future prospects, accept the patient’s decision and implement the chosen interventions. There is no shared decision making worthy of comment. (Surgeons at times even take the patient’s view of where to make the incision!). It is a simple arrangement which applies in many disciplines where the practitioners are evidently less squeamish. With the lawyer, financial adviser, accountant, gardener or hairdresser the client gives instruction. Medicine is facing unprecedented turmoil with the advent of artificial intelligence and the impending redundancy of the bio-scientist physician. It needs a rational plan on further restructuring and this is a needless distraction.

    Bill Anderson / Reply
  3. I absolutely agree that inclusive patient healthcare decision making involves a complete overhaul of how medicine as a discipline is taught to medical trainees across the healthcare industry.
    Furthermore, researchers require a completely new education on how to write up their research so everybody can read it. Not making research simplistic, but making it readable.
    Shared is exactly that , together, and once systems are put in place to educate the new era of healthcare workers, ( medical doctors, researchers, nurses, etc), adding in the main ingredient, the patient, will have a far greater meaning to an overall win win approach.
    This in turn hopefully will bring about a much needed prescribed stage of general care, namely quality recovery treatment after surgeries and drug treatments.
    To universities, you really do need to re think education in healthcare.

    Philippa Hobbs / Reply

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