Notes on Mission and Charter – 1/9/20
(Lisa is in blue font, Debi in green, comments and sentiment captured from 1/9/20 call in red)
Mikael provided a comment on the mission prior to the meeting, and Lisa N and Debi worked on charter improvements. Then we discussed on the 1/9 call. Here are the details:
Mission suggestion by Mikael week of 1/2/20:
“The purpose of the Patient Empowerment WorkGroup will be to represent the viewpoint of patients and their care-givers as part of the standards process.”
Mikael noted: “I added a comment to the Mission statement in last week’s minutes (suggested slight rewording)
The purpose of the Patient Empowerment WorkGroup is to represent the viewpoint of patients and their care-givers within HL7 healthcare standards work .”
In order for HL7 to accomplish its mission it needs to hit home with the actual patient.
Quote UN/WHO about voice of stakeholder
Elevate the value of the patient’s voice. Change the mindset.
Charter work by Lisa Nelson week of 1/2/20 and Debi’s feedback
Work Products and Contributions to HL7 Processes:
Provide a participation entry-point and focal point for individuals interested is participating in the HL7 standards development process (with respect to both influencing and leveraging HL7 standards) representing their role as patients, caregivers and advocates.
- Work Product:
i. education and support for these newcomers to HL7 (I believe we need to focus this on newcomers to the HL7 who wish to participate in the Patient Empowerment Workgroup. Taking on educating and supporting all newcomers will be out of scope for our group. Perhaps combining this with the next point will clarify who we want to support) (during 1/9/20 call added “these” to address Debi’s concerns)
ii. community of support for HL7 members passionate about strengthening the role patients and caregivers play in standards development
i. added growth and diversity for the HL7 Community
We need to add a section here about responding to the needs of HL7 members and workgroups who would like our feedback on their standards development, etc.. It is different from the section below because it is focused on meeting the needs of the other workgroups when requested.
Ensure that (appropriate) impacts on patients and caregivers (positive and negative) are considered in the standards development process and are appropriately documented in as part of all relevant HL7 standards. For example, provide the patient voice to the interoperability security and privacy conversation.
- Work Products:
i. Cross-Paradigm Patient-centric Patient Stories, Use Cases, and data element definitions
ii. Logical modeling that takes the patient perspective into consideration
iii. Assistance in the standards development process by providing patient subject matter expertise
iv. Patient centric guidelines for standards developers and implementers (i.e, Patient-centric checklist for FHIR apps)
i. more complete specifications that take all stakeholders’ requirements into consideration.
Assist on the development of implementation guides that include interoperability with patient-facing systems. These are some example use cases: Patient requests for information correction or update, patient supplied consents, patient generated data (including health concerns, device data, notes, questionnaire responses), patient initiated scheduling requests.
- Work Products:
i. Contributions to or Creation of Implementation Guides
i. Specification that take the perspective and needs of and benefits to patients and caregivers into consideration.
We also spoke about creating educational materials for patients (outside of HL7) to inform them of their rights and the new standards and technologies that are available to them. I know there has been a lot of work in this area that we can incorporate, but having it here will also help us to have it readily available to patients who are wondering how to move forward.
Lisa emphasized the importance that the charter must describe how we will carry out our mission – must have clear objectives listed with associated work products and contributions (see her recommended layout above).
Another job of the group is to collaborate with advocacy groups. (Abbie) This is potentially another objective for the charter.
From Mikael: (add to start of some sentence in charter)
Aiming to enable patients and their care-givers to become truly active participants in decision-making in health and social care, the Patient Empowerment WorkGroup
* Provides an entry-point and (…)
Jan: Add more passion to the whole document.
Mikael: Emphasize benefit