I’m the son, Custodian, and Healthcare Proxy of my 89-year-old mother, Alice. I live in a different state. My mother has diabetes and is depressed. Her care team, besides herself and me, includes medical providers in various health settings, community support agencies, and a full-time caregiver that helps her schedule and get to health-related services. My problem is to understand what my mother wants for herself and to track who says they’re doing something for her (including my mother and me), what they’re doing, and when they’re doing it. I want to know what it takes to do it (Can she afford it? Can she get there? Does it agree with her? Who will be with her? etc.). I want to know if the actions have the effects we thought they would. I want to know what her risks are and how we plan to prevent or respond to them. I want to able to keep track of all this and keep it current. I want to share it or have it shared from day-to-day and from setting to setting even if I’m not present.

I’ve used this narrative for some time to ground my work in care planning and communication at transitions. Grounding in real life helps me focus and build collaborations. Otherwise, I’m off in a million directions. Actually, this narrative combines the stories of many, many people include you, dear reader.  So, Alice and her son, or you and your dad, or you and your caregiver, or you and your patient need the right information about the right person or group of people at the right time in the right manner for the right viewer. This is Precision as in Precision Medicine. The right view is Prism.  Hence, Precision Prism.

Much of my attention lately has been with the Patient Centered Outcomes Research Institute (PCORI), clinical decision support (CDS) researchers, the Patient View Institute and Involution Studios designers. Precision Prism pulls these stakeholders and initiatives together nicely. Precision Prism recognizes that people at the center of care benefit from knowing what works to attain short-term, intermediate and long-term outcomes. Knowing what is likely to work for groups of people can be learned through surveys, clinical trials, and comparative effectiveness research. Ultimately, lay people and health professionals use population health data to better a person’s health – they are an experiment of one. Individuals are the source of what does work. Precision Prism can integrate and inform research and CDS through continuous learning cycles for both individuals and groups of people. You can learn more here about Precision Prism.  This website is occasionally updated as we learn and design. Stay tuned.

Danny

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Join the discussion 2 Comments

  • Sue says:

    Hi Danny,
    I sure like the vision of today’s post and I went to the Precision Prism site to check it out and I like its open sourcey-ness. I am one of those individuals who fills out every survey my Medical caregivers and my health insurance people send me about how they’re doing. In addition I try to proactively give gratitude/praise when such entities get it right and good positive feedback when they in my view mess up. And I’m not adverse to doing this repeatedly for bureaucratic problems that might continue for years–this because I’m channeling my elders who went down in deeper & deeper dementia/disability and I’m trying to speak for all those who have similar difficulties.
    But as an occasional “patient” sometimes light-duty/occasionally bigtime (for years at a time) “caregiver” I don’t have the computer smarts or techie patience/vocabulary to even know if I’m one of the people Precision Prism is looking to have sign up to participate in what? Data gathering I think. Or is this maybe is a more macro-endeavor that precludes some random individual like me getting involved?
    I’m interested in any answer you can give on this.

    • Danny says:

      Sue, love your comment. Yes, it’s not clear yet, is it? I’m working on that now. Verbs that come up for me include lurk, share, opine, build, direct, steer, integrate, use, fund. I need to get clearer about this. More to come.

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