So I shared a bit last week about what patient inclusion isn’t. So now it’s time to think about what it is. I believe patient inclusion will look different in different contexts, so including patients in their own care decisions can and should be done directly and in every circumstance (although from a comment on last weeks blog it appears we aren’t there yet.)
Including patients in things like health policy, conferences and the decision making processes of diabetes organisations is a bit more complicated. Take conferences for example. If a professional doctors association wants to organise a conference for their members then I don’t believe anybody else has a right to tell them who must be allowed to attend. When a conference is organised by a group with a membership base that includes people with diabetes OR it uses public funds then I think there is an obligation to walk the talk of shared decision making, collaboration and empowerment of patients.
Surely people with diabetes should be able to access the latest research and ideas-after all they’ve got the biggest stake in all of this. I have heard some say that people with diabetes won’t understand what is being presented. That’s a decision we don’t need you to make on our behalf. Nobody’s expecting you to ‘dumb down’ content to accommodate patients-many patients are well educated and hold degrees in science, health-related fields and understand research methodologies as well as doctors.
I believe that the https://patientsincluded.org charter defines patient inclusion for conferences really well. They also have an equally good one for journals.
- Patients or caregivers with experience relevant to the conference’s central theme actively participate in the design and planning of the event, including the selection of themes, topics and speakers.
- Patients or caregivers with experience of the issues addressed by the event participate in its delivery, and appear in its physical audience.
- Travel and accommodation expenses for patients or caregivers participating in the advertised program are paid in full, in advance. Scholarships are provided by the conference organizers to allow patients or caregivers affected by the relevant issues to attend as delegates.
- The disability requirements of participants are accommodated. All applicable sessions, breakouts, ancillary meetings, and other program elements are open to patient delegates.
- Access for virtual participants is facilitated, with free streaming video provided online wherever possible.
Off the top of my head a couple of examples of medical conferences that do patient inclusion well include the well-resourced US Stanford Medx, the less well resourced but clever and innovative #HealthXPh Philippine Healthcare & Social Media Summit. In diabetes, as is often the case we have to do it for ourselves, rather than patients included we have patient organised and run conferences. Reality Check/Type 1 Diabetes Network started the trend decades ago, the English began the Diabetes Unconference in response to DUK’s professionals only conference and the US has FFL, Diabetes Hope and no doubt quite a few others. I am unaware of diabetes “patients included” medically run conferences but I hope they’re out there… somewhere despite the advertising rules etc.
What about Diabetes membership organisations? Has anybody seen a charter for bodies supposed to be representing the interests of patients?
What would you include in a Charter for Diabetes organisations who claim to be membership associations?
That members elect the Directors?
That members participate directly in the formulation of business plans, the allocation of resources to those business plans and in campaigns.
How independent should membership associations be of health professionals, of government, of big pharma? My feeling is there is huge potential for conflict of interests between these groups and no processes in place to protect members. Health professionals and pharma have their own organisations that represent their interests exclusively why don’t people with diabetes have these? (I know that there are great charities started by people with/parents of pwd but they have a specific focus e.g. a cure, affordable technology etc and they are not membership organisations/associations)
Does your “member” organisation represent your interests? If not whose do you think they represent?