I wrote a blog post a couple of weeks ago for the Society of Participatory Medicine about Service Agreements Among Friends and Colleagues. My point was that service agreements set boundaries, which can be especially important for someone who’s managing a chronic condition. I shared my post with my colleagues at Involution Studios while we discussed the future of Precision Medicine. What if we had service agreements with members of our health team? Professionals and non-professionals. And ourselves. Could we think of care plans as service agreements? Person-centered care planning focuses on the goals of the person on the health journey. Who’s going to do what to get there? When? How will these goals and activities be tracked and shared across time and settings? The service agreement is the who’s doing what to get there and when are they going to do it? If my goal is to progress as slowly as possible with my Multiple Sclerosis, then my part of the service agreement is that I will:
- Take my MS and other meds as prescribed
- I will maintain my strength and balance by exercising as planned every other day
- I will walk 3,500 steps a day
- I will rest when I’m tired
- I will continue meaningful work at least 1 hour in 4 out of 7 days
- I will actively work to reduce manageable stress
- I will keep my neurologist and PCP informed when my status changes
My neurologist and PCP will:
- Keep my health goals in mind as we travel this journey together
- Prescribe the least amount of medication necessary to manage my MS and MS symptoms in consultation with me
- Respond to my status reports and questions sent via portal within 2 business days
- Refer me to specialists as needed who will respect and appreciate my engaged style
Now I better share this with them. I think they’ll get a kick out of it and say we’re already doing that.
Yes, I’m sad to say it’s a common occurrence for patient input and knowledge is ignored and not appreciated.I work very hard as a person with a chronic illness to select the right team and build the relationship. It’s almost impossible when something acute happens. Sometimes it works when you have someone with you as an advocate, but that’s hit and miss as well. As a clinician, what do you suggest?
Yeah…let me know how THAT works out for you. I am trying to get care for 2 rare diseases in supposedly a leading academic medical center. But care is fragmented, inefficient, and agonizingly slow. And even though I am a highly-trained physician w impressive credentials, 30 years’ experience (28 with my autoimmune/lupus-like condition), I frequently feel that my input and related history is ignored. Is this a common experience?