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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 interestWorkgroup or Project Group NotesInterest (Add your name and priority)Number of persons interested in topic
Patient perspective on research Biomedical Research and RegulationPatient perspective seems to be missing2
Gene SequencingClinical Genomics, Biomedical Research and RegulationPatient perspective seems to be missing

Mikael Rinnetmaki (5) - Interested in advocating for patients' access to their own data

Nancy Lush

2
Care PlanningPatient CareCare Plan should have patient perspective

Debi Willis (2), Nancy Lush (2), Lisa R. Nelson (4) (please note the close tie between CareTeam and CarePlan)

Jan Oldenburg (1)

Maria D. Moen (1)

5
ConsentsCBCPConsents should have patient perspective

Mikael Rinnetmaki (1) Interested in Consent resource and it's use. A priority for me.

Debi Willis (4), @Nancy Lush (3), Lisa R. Nelson (2)

Maria D. Moen (2)

5
Corrections to errors in the recordArgonaut? 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.


5
RegistriesCICPatient perspective3
Patient ObservationsOrders and ObservationsVital 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.

Mikael Rinnetmaki (2) - Interested in presenting use cases from the "mixed zone", especially with type 1 diabetes. Virginia Lorenzi (2)

Jan Oldenburg (2)

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 patientsCARIN AcceleratorShould be monitored.  However, US focused.

Debi Willis , Virginia Lorenzi (1) because I am involved in Carin

2
Payer to payer communicationDaVinciIs there consent?1
Devices on FHIR/PHD IGHealthcare DevicesPersonal devices used by patients such as glucose meters, continuous glucose monitors, insulin pumps, etc.…

Mikael Rinnetmaki (4) - Interested in following the development of the specs.

Jan Oldenburg (3)

2
Care TeamLearning Health System?
3
USCDI/USCore Data QueryArgonaut?
3
Patient AdministrationPatient, related personSpecifically interested in modeling of whole family relationships and how that could be accomplished in FHIR.1
(2)Outreach "welcome mat" to patient advocatesPatient Empowerment
4
Communication about devdaysPatient Empowerment

Mikael Rinnetmaki (3) - I'm the track lead, I need to be interested. (smile)

Dave deBronkart

2
Guidance on making Patient Centered decisions (Patient Centered Cookbook, checklist)Patient Empowerment

Rachel Richesson (4) (Could tie this in to Evidence-Based Medicine (EBMonFHIR) and evaluating research-base or evidence behind certain treatments)

Maria D. Moen (4)

2
Patient-mediated ExchangePatient EmpowermentEmpowering the patient to control care, eliminate some of the current gaps, and help to reduce the cost of care and administrative burden.2
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3 Comments

  1. Sorry, did not thoroughly follow instructions. If I need to select 3 and rank them, they are 1) Consents, 2) Patient Observations 3) Communication about DevDays

  2. My priority ranks are Patient-mediated Exchange, Collaborative Care Plans, and Consents.

  3. My Priorities are:  1. Patients being able to identify needed corrections, 2. Consent, 3. Modeling of family relationships to be able to know how individuals in a family/household are related in a computable way, 4. CareTeam&Care Plans, 5. Creating a welcoming community that can grow quickly and achieve a size and weight to have actual impact on what work gets addressed and how patient perspectives are reflected in solution designs.