Patient Inclusion: Pt 1 What it’s not.

Melinda Seed writes for Twice Diabetes
Melinda Seed writes for Twice Diabetes

There is a lot of talk about including patients. You’ll see it in hashtags like #ptsincluded and in sayings like “Nothing for us without us”.  What does it actually mean and how can it be implemented? This week I’m thinking about what patient inclusion ISN’T.

The best example of what it means to EXCLUDE patients comes from Diabetes UK’s Diabetes Professional Conference. Entry at this conference is restricted to those who have requisite qualifications as a professional-hence patients are excluded. There was quite the social media storm from some advocates a few years ago about an organisation of which pwd are members would exclude those willing to pay the entrance fee from a conference .  DUK responded by inviting a select few D advocates to attend, for free. The move has a certain cheap sophistry about it. The invitees felt special and stopped criticising the general exclusion of people with D and those who weren’t invited were dismissed as being unworthy of inclusion and their complaints were described as arising from jealousy. (These actual accusations were NOT made by DUK but they were certainly insinuated and in some cases openly stated by those in the diabetes social media sphere.) Oh and I hasten to clarify I’m not jealous because as keen an advocate as I am, I wouldn’t travel 3,000kms to attend  a D conference in Glasgow and I’m not English so don’t think I’d be eligible anyway :)!

“Tokenism does not change stereotypes of social systems but works to preserve them, since it dulls the revolutionary impulse.”  Mary Daly

So patient inclusion is NOT hand picking a few vocal patients and giving them a specific task eg tweeting or blogging about the conference or being a speaker/example. Done well this is potentially a great communications strategy but it’s not patient inclusion.  I’ve got my hand up to be picked to write about any conferences and think it’s a brilliant idea (just as I did at World Diabetes Congress) but I did this as part of the Congress’s media strategy NOT as patient inclusion. Patient inclusion is quite different.

Patient inclusion is NOT diabetes organisations employing a person with diabetes and using them as  THE patient/consumer representative whenever one is required. By all means employ a person with diabetes BUT their job should be to engage with the D community and to empower and promote consumer advocacy so there are lots of diverse voices representing people with diabetes and most importantly these voices can be independent.

Patient inclusion is NOT diabetes organisations whacking up the profiles of a few people with diabetes on their website, never engaging them again and calling them representatives or ambassadors.

Patient inclusion is NOT asking a few leading questions in a  survey any undergraduate would be failed for attempting to use as a research methodology and using it to justify the actions you want to take.

Next week I hope to talk about what patient inclusion is or might be.

I  realise that including patients can be really difficult for D orgs-so open invitation to any D org to talk about how they include patients and particularly the difficulties involved in trying to do this well. Happy to provide space on blog here or link back to another website or blog.

I’d love to hear about your thoughts or experiences with patient inclusion? Do you have any examples of it working well ? Do you want to be included? Is it even possible for patients to be included anyway? Committees and conferences take up huge amounts of time during business hours, who’s got time for it?


5 thoughts on “Patient Inclusion: Pt 1 What it’s not.

  1. This may not exactly be the type of conference you are describing Melinda but my idea of patient inclusion was sorely tested during my experience over the past 4 months. I have had had the Diabetes team have regular case conferences about my treatment where my thoughts, wishes and knowledge about my Diabetes were entirely ignored. If patient inclusion can be entirely ignored at this level, what hope is there for PWD being included at any level.

  2. Oh dear, that’s even worse Sweetie, when you’re not even included in YOUR own care. I worked for a health organisation in another ‘disease area’ where they were hugely into multidisciplinary care (MDC) and they were always pushing the necessity of MDC meetings to discuss pt cases. They were quite adamant that patients shouldn’t be included, when I challenged this I was told that the Drs didn’t want it because they couldn’t eat their lunch during the meetings (really!) and that research showed patients didn’t want to be included because it upset them. The ‘research’ amounted to an extremely small study of women in northern Europe in the early 1970s. The fact that people (especially women’s) views on healthcare, levels of education and empowerment have changed dramatically since the 1970s, not to mention that you can’t universalise the findings from one small ethnic/national group of women to ALL people at all times.

    The common thing, whether it be in a patient situation or a public health situation is that HCPs see patients as “things” to be acted upon/passive recipients of their care because they know best. This is inappropriate in all situations IMO but particularly so in t1 diabetes. Of course when we raise these issues we’re seen as being “negative”-another way of silencing our voices and being able to reinforce the HCP position, at least among themselves.

  3. I totally agree that patient inclusion is NOT a select few chosen by various diabetes organizations or affiliations as so called advocates, when in fact the chosen few are frequently not representative of the majority of the diabetes community. For example how does someone who works for these diabetes organizations or affiliations, often privileged by way of seemingly being chosen to trial new diabetes technology, given grants to run DOC’s, and spending their work time involved in nothing less then diabetes have a lived experience of what it is actually like to live and work in an non diabetes focused world?

    From my experience they don’t and frequently appear bias and limited in what it is actually like to live and work with people whom are often ignorance and intolerant of diabetes. Yet the diabetes organizations for all their expanding on advocacy are very reluctant to have anyone challenge them, I have written multiple times to various organizations with substantiated concerns and complaints and to date have had either rhetorical rubbish as a response or no response.

    When corporate branding and high paid executive management take president over the needs of a diabetes community, these leaches do not want to know the real struggle of genuine everyday diabetics, they are interested in nothing less then their own high salaries and the nepotism that enables this.

    1. Thanks for your comments Blackjava. I can’t understand why it’s so hard for organisations to listen to their supposed members. I find the situation particularly frustrating in NSW, some other states do a better job IMO.

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