Patient involvement in health advocacy is overrated and dangerous. Light blue touch paper. Retire. Again.
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Now I’ve tried to open a debate - with myself, I realise, but an occasional blogger can dream - I’m setting off into boggy ground. Whilst being positive about the expertise of experts in my immediately previous post, I do know doctors and scientists can get it wrong. We still need to work on avoiding the automatic deferential respect of their expert position.
However, I’m also clear that replacing that with automatic deferential respect of a ‘people and patients with a personal connection’ (PPPC) position is not healthy either. Quite a lot of patients seem expert in knowing what they want – one can hardly expect them to have an objective view after all. What we on the outside need, however, is an objective offering of what works, not what other sections of the lay public would prefer - that's not the same thing at all.
Breast cancer lobbyists have persuaded most women that breast cancer is the single largest danger to their health – it isn’t - and have removed older women from view almost completely. This is not correct, honest or helpful but I’m not supposed to say that, as it might upset some women with cancer. And many breast cancer charities. Their motivations are genuinely beyond reproach but, I contend, not beyond criticism when it comes to their marshalling of PPPC. Older women are so effectively marginalised by their younger sisterhood that they have no idea increasing age is an major risk for a diagnosis of breast cancer.
Another PPPC brigade got stuck into MMR – aided by some incompetent and populist journalism. The MMR debate achieved a huge and entirely wrongheaded significance as a risk for children. This was due to media huff and puff, not based on any understanding and augmented by the apparently persuasive epistemologically privileged viewpoint of parents, with feeling but also not enough understanding. This drowned out the rather more accurate meaningful and rational critique from the right experts.
Tedious, but true.
I don’t want to be treated in a health service where PPPC rules and patient opinion trumps all. I want expert discussion with a doctor to guide me through any treatment choices. I had a stupid conversation with a colorectal surgeon recently who must have had training in ‘thinking more like a patient’. Fat lot of good it did either of us. He would screen me for colorectal cancer if I wanted it. Good. There’s a family history. But I only wanted it if the evidence suggested this was a good idea – balancing the chance of any diagnosis in a possibly more susceptible bowel, with the advantages that an early diagnosis might offer, against the risks of an up-periscope procedure in the gut, and the exact meaning of an ‘all clear’ after all that.
This had to involve me in some discussion of benefit and risks. How was he to know what was important to me with no discussion? But the colorectal surgeon persisted in responding by repeating that I could have it if I wanted. But I couldn’t work out if I wanted it if he didn’t discuss the evidence. So we ended up glaring at each other, mystified by the other’s dimness.
I made my excuses and left.
I may ask about a flexi. sig. sometime in the next five years, instead. I can make up my own screening preferences based on what I want, not what the evidence says would be the best option for someone like me. That’s what happens when patient preference is fetishised but what I really want is a half decent grip on the evidence base.
Last week my dim view of the wilder exploits of PPPC got suddenly worse. I woke to the news that some researchers in ME have been subjected to abuse, threats and ill-willed reputational assaults from ME lobbyists because they were inclined to investigate the condition from a psychological or psychiatric perspective rather than a viral one. Unfortunately the chosen advocacy style of those whom the BBC called ME activists (oxymoronically, to my eye) does rather support the wisdom of investigating psychological adjustment or psychiatric influences in causing or prolonging ME.
But it also flags up the deficiencies of a PPPC as way of expressing what a patient lobby stands for. Evidently some members of the ME community have a line they wish to take and are, one supposes, intent on socialising every other person with ME into an orthodoxy of thinking about what ME means. Patients as thought police, scientists as thought criminals.
Love those patient lobbyists!
On another recent Radio 4 Today programme there was a discussion about drug treatments, set off, I imagine, by Amy Winehouse’s death. It involved discussing the difference between detox and rehab. One or other carried a risk of death. Or didn’t. That was the discussion.
One contributor was a CEO of an addiction charity. It became clear she was a lay person with no grip at all of the conventions of peer review and scientific publication but she did have a point of view, access to Radio 4 and an opinion to share. She was happy to malign a Professor Strang of the Maudsley (no, I don’t know him) who had, rightly, openly, declared a potential conflict of interest at the end of a peer reviewed published academic paper on methadone. In the dippy CEO’s view this was enough to mean his paper was worthless and compromised, he was clearly going to be positive about methadone because the pharma who occasionally paid him fees for his expertise manufactured it.
Actually, these declarations are made so readers can look at the evidence and have that information at the back of their mind, in a spirit of transparency. It might have been an influence in the research. But if peer reviewers did not detect corruption or scientific misconduct in the methods and conclusion, usually that means there wasn’t any. She had no constructive appraisal of the paper to offer, no evidence supporting an allegation of fraud or dishonesty to take to the authorities - just evidence of good practice by Professor Strang and excellent editorial standrds in the journal in declaring his potential conflict of interest and she used that as indicative of his bad faith. Would she have preferred no declaration at all? Her mud slung, the story ended.
I wondered how she’d marshal evidence to lobby effectively for her charity’s clientele if she doesn’t understand how to appraise published scientific evidence? Does she need only the imprimatur as a ‘worthy charitable lay person’ with an opinion and the chance to peddle it? A professional would not get away with it and would not misinform the public about scientific publishing convention to make a cheap point wrongly.
I have current cause to look closely at cot death, again, and have been discomfited, again, about what I can see in the research literature. All along, right from the early 1950’s when research papers on sudden death in infancy began to appear it has been obvious that deprivation, lower social economic status, poverty, inequalities in child health - however you choose to describe that suite of issues - have a great bearing in increasing the risk of a cot death occuring.
When a baby dies of cot death there are two basic questions that crop up. Why did this baby die and what can be done to prevent more babies dying? The first part is a retrospective element, of great interest to bereaved parents; ‘why did my baby die?’ The second 'What can be done to prevent more babies dying?' has a prospective element, of some interest to bereaved parents but of more interest to public health experts and to the massive numbers of parents of small babies currently fine, but at potential risk. Crucially though, those patrents are not on the cot death advocacy front line.
The research agenda in cot death is driven by the concerns of bereaved parents and always has been. Those parents with the psychological and financial wherewithal to lobby, set up, innovate, fundraise and campaign have got stuck in. However, their babies were not formerly the ones most at risk, nor are they the ones still most at risk now. But they clearly have a great deal invested inthe question 'Why did my baby die?'
Now, when child health inequalities are really significant in cot death, the research agenda from the last three decades has not generated research evidence on how to best work on prevention strategies, or new prevention advice, with poorer families, whose babies are at particular risk of cot death. The research activity does, however, offer a never ending list of biologically plausible but ultimately not very informative lists of biological pathways, genetic markers, developmental anomalies and physiological hypotheses that may, but never certainly do, explain why a baby died.
The fundraising and research is still concentrated on better off parents’ questions - ones which originated in the past and answer a question about a tragic event in the past. ‘Why did my baby die?’
It does not address the current question ‘how do we prevent more babies dying?
We are still relying on better off parents for cot death research funds. Why aren’t the research questions moving towards cot death and inequalities in child health? Might this be too difficult a question to broach with a parent/patient lobby group which has taken the lead, because of the respect we have for their personal perspective?
I think it probably is. And is that a problem? Yes, I think it probably is. A really quite big one.
