Continuing my practice of “flipping” an event — posting what I hope to get across in advance in order to jump start the conversation, here is a preview for a panel set to take place at 12pm on Friday, Oct. 19, in Boston.
One of the maxims I carry with me into every meeting and project is:
If we give people access to the information, data, and tools they need to solve problems, they will.
On Friday, I’ll be part of a discussion about a project with a great acronym: L.A.U.N.C.H (Linking & Amplifying User-centered Networks through Connected Health). It’s a a multi-stakeholder collaborative that seeks to address challenges of rural cancer care, such as symptom management. Joining me will be two of the initiative’s leaders — Lisa Klesges and Don Norman — plus another outside advisor, Don Berwick. Roughly speaking (I’m new to the project) we will talk about how to learn from people in Kentucky about what they need related to the management of cancer.
My research at the intersection of health and tech adoption shows that having access to the internet gives people access not only to more information, but also to each other. Patients and caregivers know things about their health, their bodies, their communities and being connected to each other (which technology can help to do) enables them to share what they know with each other and with their clinicians, to get better, faster. Or to manage symptoms as they don’t get better, which I have personal experience with as a caregiver for my father, who died from complications for treatment of melanoma in 2017.
At HHS, my team empowered front-line federal workers to ask questions, to share what they know, to work directly with the citizens they serve to come up with solutions to problems. This was radical, as you can imagine, since we bypassed the permafrost of middle management. As CTO I could sprinkle fairy dust on someone way down deep in an agency’s hierarchy and say, “Go! Be an entrepreneur for 3 months! Ask questions. Build prototypes that may fail.” One of the outcomes we were after was culture change — giving federal workers the idea that they are allowed to have ideas.
My questions for my fellow panelists and for those who come to our discussion include: How might we give the patients and caregivers in L.A.U.N.C.H. this same sense of power? How might that affect their communities?
If you plan to be at the Connected Health conference, please come by the Innovation Zone where this panel will take place on Friday. Or join me in the audience that afternoon when two more L.A.U.N.C.H. leaders, Brad Hesse and David Ahern, will be on another panel titled, “Digital Cancer Care.”
Featured image: View from the Knob, in Kentucky, by Tom Gill on Flickr
Eileen Dahl says
Thank you!!! This had me thinking, and i posted this on my IG account as a reflection. I thought you may be interested. I am still thinking, it’s complex…
What would happen if patients with lived experience were full collaborative partners in EVERY phase of the development and delivery of patient education?
How might this shift patient learning and the patient experience?
When a patient leans over and says to another patient, “Don’t skip your scheduled anti nausea meds after chemo, even if you feel ok.” It is heard differently than when a healthcare professional says the exact same thing.
Patients have a lot to teach each other, but more often than not, the body of knowledge gained by lived experience is not acknowledged or valued in the health care system. And…. sometimes the thought of patients teaching each other is met with downright suspicion and concern.
What would happen is patients and professionals collaborated on every aspect of patient education? Would patients listen differently if the person co-teaching the chemo teaching session spoke about their own experience living through chemo? Would a trained patient facilitator with lived experience hear the question behind the question? The concern that is being skirted around and only alluded to?
In switching to the patient role, (incognito for 2.5 years) yet at palliative care conferences and engaging in dual capacities, I began to hear things I had never picked up on before. The assumptions of the perpetually suffering patient. The sense of my identity and professional wisdom being stripped away when I put in the hospital gown. The narrative that always places the patient as the most vulnerable person in the room, the consumer, the drain on resources instead of a resource and contributor in their own right.
Susannah Fox says
Eileen, thank you, thank you, thank you for this comment. I’m sorry I’m late in my reply — the Connected Health conference was a whirlwind, morning to night, for the two days I was there.
The panel was short and (hopefully) useful for shining a light on the possibilities of pushing technology out to the edges (where humanity lives) and for protecting joy in medicine (Don Berwick’s lovely phrase).
Eileen Dahl says
Glad to hear the session went well… just curious. How many patients were at the table? As speakers? As attendees and participants? Nearly every healthcare conference I attend, there is much talk ABOUT patients without a collaborative speaking WITH patients aspect. A patient may be invited to do an “inspirational” key note, but that is not the same as sitting at a table face to face and talking about real issues and change. Likewise, at that collaborative round table the healthcare professionals must be willing to engage from not just their professional self, but also from their shared humanity as family members, friends or patients with lived experience. Then we can truly connect on a level that can be difficult to reach. Cheers!
Susannah Fox says
Great question. For our 20-minute mini panel, there were 4 people — none of us patients. As for the rest of the conference, I saw patients and caregivers serving as speakers and moderators of panels, but I don’t have a count or percentage. The Society for Participatory Medicine held their annual meeting as a pre-conference event affiliated with Connected Health and that was definitely a patients-included agenda & audience.