Patient involvement in developing clinical guidelines, 2024, Greenhalgh et al

Haveyoutriedyoga · Nov 8, 2024

Full title: Patient involvement in developing clinical guidelines

Source: BMJ 2024; 387 doi: https://doi.org/10.1136/bmj.q2433 (November 2024)

Experiential evidence must be open to scrutiny and criticism

The literature on development of clinical guidelines generally accepts that patients and carers should be involved in the process.123 Patients contribute subjective and practical knowledge of a condition, including what it feels like, what challenges it poses to living a productive and fulfilling life, and how to manage symptoms and flare-ups. Patient knowledge (“experiential evidence” or “lived experience”) often complements but sometimes conflicts with the professional knowledge of clinicians and academics on guidance development panels. Patient input to guideline panels has contributed to better care experiences and better health outcomes2 but is not without controversy.

Most guideline development panels worldwide follow the grading of recommendations assessment, development, and evaluation (GRADE) approach. These methods set out how to assess and combine research evidence by weighting it according to study design, risk of bias, and magnitude of effect.4 GRADE methods are widely accepted but have been described as hierarchical, quantitative, and exclusively focused on research evidence.567 Partly in response to such criticism, GRADE guidance has evolved to incorporate research into patients’ values and preferences (usually in the form of patient reported outcome measures).89 However, this approach to capturing the patient experience has been justifiably criticised for “subordinating patient patient preferences and values to the process of generating accurate quantitative data.”10 Quantified metrics of patient experience have value (for example, in health economics) but are not a valid substitute for experiential evidence, contributed as first-person narratives, in panel deliberations.
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Haveyoutriedyoga · Nov 8, 2024

Study designs that score well on GRADE (such as randomised controlled trials)4 can contain hidden biases against groups that are under-represented in published trials (eg, people from ethnic minorities, socioeconomically disadvantaged groups, those who lack full citizenship status, and people with multimorbidity or complex health and social care needs).11
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the assumptions and preferences—and sometimes the vested interests13—behind a patient’s or an advocacy group’s position also need to be fairly examined and challenged. Otherwise, the desire to respect patient participation could lead to their views being sought and incorporated in ways that undermine the trustworthiness and applicability of the ensuing guidance.
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First-person narratives are not simply chronological accounts of experiences and events. They are freighted with interpretation, motivation, and other dents to what we think of as objectivity. But they are also structured by reason and—unless deliberately crafted to deceive—are aimed at conveying an authentic picture. They must be open to scrutiny and criticism, and evaluated alongside other forms of evidence.14 But there is little agreement on how and by whom such experiential evidence should be challenged. Few committee members would be comfortable cross examining a patient or relative who has just shared a deeply personal and distressing story. For understandable reasons, interrogation of patient evidence may happen during the closed part of technology appraisal meetings, when the patient is no longer there to defend their stance. To avoid such imbalances of epistemic power, we propose that evidence tabled in guidance development panels (and other groups feeding into such panels, such as technology appraisal committees) should be open to scrutiny in a forum where all participants can contribute.
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sound experiential input requires a diversity of patients from a range of backgrounds, severity of illness, and at various stages in that journey.
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not all patient groups have equal access to resources and expertise. Some advocacy organisations for common long term conditions in high income countries are well organised and funded. They have epistemic power, which can influence both the quality and the quantity of research undertaken and how that research is incorporated into guidance. Representation and advocacy are more challenging for panels considering severe acute conditions
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Patients and carers who sit on guideline development panels need training, support, reimbursement of costs, and possibly payment to optimise their contribution. We also need to avoid the pendulum swinging from a historical failure to recognise patient knowledge at all to a future scenario where such knowledge is sought but inadequately scrutinised.
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Jonathan Edwards · Nov 8, 2024

I haven't read the full article but going by the quotes and Greenhalgh's usual level of analysis I suspect a basic missing point.

Patient experience of experience is undoubtable and the ultimate gold standard.
But patient 'experience' of what seemed to cause what is at least as unreliable as any formal trial - generally speaking much more unreliable.

The decisions in developing guidelines centre around what caused what. Patient experience on that may provide initial pointers but is rarely going to influence any difficult decisions.

However, there is a situation in which patient analysis of what caused what may be better than any trials or the opinions of medical experts. A good example was the NG206 committee, where, as far as I could gather, the medical experts had much less understanding of how to gauge what caused what than the patient representatives. One even claimed that pragmatic trials, despite being unable to determine what cause what could tell us what was effective treatment.

But I rather doubt Greenhalgh thought of that situation!

And of course GRADE is not quantitative. It is pseudoquantitative.

rvallee · Nov 13, 2024

Is she remotely aware of how incredibly hypocritical this is considering her complete dismissal of us raising many of those concerns? Doubtful. She certainly has not applied this when it comes to her own LC papers, or much of her work before that.

Experiential evidence must be open to scrutiny and criticism
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Ah, but not us, though. Is it that she must approve that the criticism is valid? Just bad vibes? Must not be friends with the ones who are criticized?

Rules for thee, not for me. Or maybe it's "for my friends everything for my enemies the law"? Where the law is basically "shut the hell up, your body, my choice".

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Patient involvement in developing clinical guidelines, 2024, Greenhalgh et al

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Patient involvement in developing clinical guidelines, 2024, Greenhalgh et al

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