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Clinicians think in terms of problems, I think in terms of health goals. The whole health team (me, designated caregivers, professionals, family) should be able to enter and track health goals.
yes, tagging entries solves several dilemmas: tracking who entered what for follow-up, correction, more information
PatientsLikeMe has been awarded a $1.9 million grant from the Robert Wood Johnson Foundation (RWJF) to create the world’s first open-participation research platform for the development of patient-centered health outcome measures. Hopefully, operational definitions of experience terms and concepts would be part of this. If not, ONC could sponsor a collaboration to create a dictionary of concepts and terms for the professional and the lay person. In writing my blog – http://www.health-hats.com – I find it very challenging to discuss anything related to the health journey in language that anyone can understand. A major role of a change agent in health is translator
Question: If ONC sponsored a collaboration to create a shared dictionary, how do you think they should approach that project?
Answer: Creating a shared dictionary is an open-ended project. I’d suggest starting with a small group with patient, caregiver, literacy, policy, reps with at least one person experienced with managing Direct or BlueButton, or a standardized data set like the Cancer research database. This small group could design an ongoing methodology
Welcome to Planning Room healthhats and thank you for commenting.
In thinking about multiple contributors to a single health record, do you believe it is important to label what person has input the information? (See § 3. Role of government for more information on “meta-tagging”.)
You mention correction of the entries. How would that work? Would everyone (the patient, the family, professionals and designated caregivers) all have access to the information in order to correct it, or do you have some other idea in mind?
If ONC sponsored a collaboration to create a shared dictionary, how do you think they should approach that project?
Thanks for your response, healthhats. Does anyone else have ideas for what this collaborative project would look like?