Patient involvement in health advocacy is overrated and dangerous. Light blue touch paper. Retire.

I have had it in mind to write something about the role of the ‘affected public/patient/user’ in lobbying for one health issue or another, for quite a while.

 

Gathering up patient experience and using it to improve the management and patient centredness of health services, or designing clinical research is an unequivocal good. No quibble there. But the effects can be bad, some of the time. I repeat, for the benefit of the huffily hard of thinking, I do believe it is a good thing, quite a lot of the time.

 

However, when people with a personal connection with an issue, former patients, say, or their families, get involved in lobbying on science, funding research, or driving a research agenda, raising awareness or evidence based care, things can go awry. That’s where the expertise of public health, medics and scientists resides and expertise is needed.

 

First things first. I do think people and patients with a personal connection (PPPC) are charitable, committed and convincing. Persuasive, definitely. I do not criticise their heart. But their personal connection is about them, not about the public out here, who need something expressed differently – something more inclusive, less emotional, more informative, more contextualised in a broader appreciation of a healthy life, not just concern about one disease or condition. 

 

Elsewhere, I have pointed out that if there was a cancer charity for each of the top ten cancers most likely to affect me (there aren’t, thank heavens) I would be expected to know 79 symptoms (men, coincidentally, have exactly the same number for their top ten, too) and be able match them to each cancer appropriately – according to the bog standard cancer awareness agendas ‘here, this cancer, my cancer, this one, yoo-hoo, over HERE’ that all single issue cancer charities promote.

 

After that I still I have to save a bit of space in my head for the rarer ones. And also remember that looking at ‘women only’ cancers is wrong, as that isn’t the same as ‘women might get’ – and, in common with every other woman the cancers  ‘women might get’ is the bigger risk to me.

 

And then, after all that, I may actually get heart disease instead. Or Parkinson’s.

 

As three times as many women die of heart disease as die of breast cancer I am being rational, not perverse, in glancing in that direction too. The convention of using patients as lobbyists  works best for women with breast cancer and diminishes women who get anything else – which is most of the rest of us. Ask a health journalist with a story to place, or a bowel cancer charity.

 

I regret this.

 

Attention should shift to stratifying women by age, (at the least) to map out the likely health risks for each age group – and then promoting lifestyle risk reduction and symptom recognition, based on evidence of what women in that age group are failing at, or are confused by. The strata, and hence the women in them, are the unit of interest, not each flamin' condition at a time.

 

Promoting health to the public is not well served by the distorting effects of patient lobbyists. The lobbyists’ activities won’t help the public get any health issue into perspective, in its place alongside any other health issues. Quite the opposite, in fact. They will only cover one issue at a time. It is unhelpful to drive the public repeatedly down the road to guessing which one thing might ‘get’ them, with some emotional resonance. They’ll guess wrongly.

 

Single issue PPPC lobbies are a convention, a cliché , a tradition.

 

Use the energy of PPPC to build a better train of thought.

 

Pick an audience. Men between 18 and 45, say. There are just over 12 million of them wandering the streets of the UK today in 2011. Cat in hell’s chance of any single issue health charity being able to inform any, save a tiny, tiny local minority of them about any one health issue. The  dose effects of any information that might accrue are homeopathic in their effectiveness – and the slight effects are almost totally irrelevant as a contribution to the wider public good.

 

So put a personal connection to one side and have another thought. You have an issue to present to these men. You have a way to communicate it. Now put aside the tendency to being firmly single issue and self serving. Do not pull up the drawbridge after yourself. That is simply not charitable. Your way in is a conduit for others with different but related information for the same audience.  

 

If your priority really is men between 18-45, you shouldn't be grasping the chance to pose, bravely wielding a personal connection, to fight off my critique, before striding off up the moral high road.

 

Having looked at the mortality statistics 18-45 - a smattering of cancer, but more deaths from accidents and self harm and early deaths from heart disease, there may be a more effective method to tackle mortality, morbidity and late presentation or poor symptom recogition in thse men.

 

Create a ‘Big Society’ coalition of health charities. Fundraising is hard, after all. This imaginary coalition takes a common denominator for mortality and morbidity in this audience of men between 18 and 45. I suggest risk taking behaviour. It affects what men think, feel and how they respond to something – or don’t. Members could represent obesity, drug, drink, smoking, mental health, exercise and sport charities, and health charities with particularly relevant symptom agendas for younger men, like STI’s or the rare but potentially lethals like testicular cancer or sarcoma. The joint enterprise runs health awareness raising, based on tackling risk taking behaviour – be those lifestyle factors, denying symptoms of mental ill health or simply ignoring physical symptoms until it’s very late. Less resource intensive per issue, but more relevant, to more men’s lives.

 

If a patient lobby still wants their organisation as the centre of attention it may be time to suspect their interest in the audience is secondary to their personal priority to do things in a certain way - or, worse, there’s an unholy muddle of health promotion and public benefit with brand awareness and marketing…..Stop that. Stop that NOW.