Why the #hcsmca Symposium is Patients Included
By Isabel Jordan (@seastarbatita)
For me, being involved in #hcsmca exposes me to an incredible diversity of voices. These voices include patients, caregivers, healthcare providers, researchers and healthcare communicators, and others who can’t be easily pigeon-holed into clear categories.
Weekly conversations punctuated by commentary throughout the week has allowed me to make connections, some of them very strong, with people that I simply would never have gotten to know. What’s more, I believe that we have all been able to expand each other’s view of the realities of our healthcare system, providing care and living with health conditions. Social media let us speak to each other plainly, concisely and connect meaningfully. It doesn’t matter that you are at work, taking a break between patients or clients and that I am at home looking after my son wondering when I will hear from one of his health care providers next. We are all, together, having a conversation about the meaning of better health care and community; titles, jobs, heck, time of day, fall by the wayside.
However, in the world of conferences and in person events, it’s tougher. For too long those health care conversations have been held about patients but not with patients. To be frank, if we are going to get to the solutions that work best to improve health care, we can’t afford to not to include the voices of patients and caregivers. We hold a wealth of knowledge and experience that we want to offer, and we don’t want to be kept outside closed doors.
Even with the best of intentions, it can be difficult for conference organizers to make their events inclusive of patients and caregivers. It takes more than just saying, “hey everyone, come on in.” Patients and caregivers face real and systemic barriers to attending medical conferences, not just cultural ones.
Recognizing these barriers, the Patients Included charter was created to help conference organizers structure their events to welcome and integrate patients and caregivers from planning, to speaking and attending. The Patients Included charter outlines 5 clauses facilitating authentic patient participation – patient participation that is meaningful and will make the conference better for all participants.
The 5 charter clauses are the starting point to get patients in the door. And I say starting point because I think that once conference organizers start including patients, they’ll recognize the value and grow that inclusion in subsequent years.
Deciding to take the online #hcsmca model offline to a National #hcsmca Symposium is incredibly exciting. And we made sure we met all 5 clauses:
- I, as a caregiver, am a member of the Symposium Planning Committee. Patients reviewed the scholarship applications. The event is an unconference. All attendees are involved in the planning and design.
- Patients and caregivers are attending, speaking and leading sessions at the symposium.
- Scholarships were awarded to 2 patients, 2 caregivers and 2 students. Travel and accommodations have been arranged and paid for. With additional sponsorship, we will add more scholarships.
- Accommodations will be made where necessary.
- The main stage will be livestreamed. Virtual participants can also follow #hcsmca. Notes and pictures from the break-out session will be open-access.
For the #hcsmca community, Patients Included recognizes what we already know – patients and caregivers are valuable contributors to our diverse community. Sure, those that attend benefit, but really, the whole community benefits from their inclusion. Even if I, as a caregiver, say so myself.
Don’t miss this event.