Partnership Workgroups

The Work Groups that were formed at the PFA Summit in 2016 where Advisors and National Partners are working together to carry out the action plans that were developed. The first step these teams took was to conduct an environmental scan of what is going on in the environment already, so as not to re-do work that has already been successful. After those scans were complete we found real priority and a need for improvement in the following areas: Patient Access and Qualitative Information about the Discharge Process. Please let me know if you would like to be connected to any of the work groups that can also be found below (

Patient Access Workgroup

The efforts from this group have made a natural transition to a partnership with OpenNotes (link to We have recruited a group of 10 Patient Family Advisors from across the country to participate on the National Health Information Technology (HIT) Patient Family Advisory Council.

The National HIT Patient Family Advisory Council will focus on patient portals and electronic medical records as an impartial group of patients and families who are committed to improving the ability of technology to support the patient physician relationship. Partnering with patients and families, we aim to focus on technology issues related to patient portals and identify opportunities to inform the development of electronic health record systems, patient portal development and implementation messaging to all patient populations

We began meeting in May 2018 with a focus on navigating to your physician notes through your patient portal and found many discrepancies between each Advisors experiences. The council is looking forward to informing improvements made in patient portals with a specific focus on the uptake of OpenNotes.

Qualitative Workgroup

The goals of this work group were to, originally, develop a plan for collecting, analyzing, and disseminating qualitative data from patients connected to specific issues as lessons for clinicians. After conducting an environmental scan we saw a gap in the discharge process at each hospital/healthcare organization. In partnership with Melinda Whetstone, Patient Family Advisor and research extraordinaire, we were able to conduct multiple interviews with patients and family members who had recent discharge experiences.

These interviews brought an even deeper understanding of the varying experiences that patients and families have during their hospital discharges. We are currently in the process of compiling the qualitative data from those interviews into a report with information on how hospitals can use interviews like these to improve their discharge processes.