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?