Fill out last column by indicating your name and priority for the top 3 items you would like to begin with based on your interest and what you think is important priority. We will use this to determine the most important tasks to start with and to divide up the work.
|Project, etc, of interest||Workgroup or Project Group||Notes||Interest (Add your name and priority)||Number of persons interested in topic|
|Patient perspective on research||Biomedical Research and Regulation||Patient perspective seems to be missing||2|
|Gene Sequencing||Clinical Genomics, Biomedical Research and Regulation||Patient perspective seems to be missing||2|
|Care Planning||Patient Care||Care Plan should have patient perspective||5|
|Consents||CBCP||Consents should have patient perspective||5|
|Corrections to errors in the record||Argonaut? Or is this a gap?|
Maria, Nancy, and the group as a whole emphasized importance of a mechanism for patients to communicate corrections. Stories about data errors.
Juana - "patients want to be heard and feel a degree of satisfaction".
Lisa R. Nelsonhas some cool stuff to show that demonstrates the use of new Clinical Note templates where the patient is the author. It allows the patient to annotate spots in a document that need to be changed or updated. This annotated document can then be shared back the physician to allow them to rapidly see what the patient is asking to have changed.
|Patient Observations||Orders and Observations||Vital signs, etc. Do you mix and match with clinical data? Provenance discussed. Challenges in trending. Nancy - any kind of write back to EHRs using FHIR.||3|
|Questionnaire /Questionnaire Response||expect these will be filled out by patients so should review resource.||2|
|Payer information, real time pharm ben check to patients||CARIN Accelerator||Should be monitored. However, US focused.||2|
|Payer to payer communication||DaVinci||Is there consent?|
Jan Oldenburg (5)
|Devices on FHIR/PHD IG||Healthcare Devices||Personal devices used by patients such as glucose meters, continuous glucose monitors, insulin pumps, etc.…||2|
|Care Team||Learning Health System?||3|
|USCDI/USCore Data Query||Argonaut?||3|
|Patient Administration||Patient, related person||Specifically interested in modeling of whole family relationships and how that could be accomplished in FHIR.|
Lisa R. Nelson (3)
|(2)Outreach "welcome mat" to patient advocates||Patient Empowerment||4|
|Communication about devdays||Patient Empowerment||2|
|Guidance on making Patient Centered decisions (Patient Centered Cookbook, checklist)||Patient Empowerment||2|
|Patient-mediated Exchange||Patient Empowerment||Empowering the patient to control care, eliminate some of the current gaps, and help to reduce the cost of care and administrative burden.||2|