PFAnetwork Workgroup Products

National Health Information Technology (HIT)
Patient Family Advisory Council (PFAC)

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. In 2019 the HIT PFAC decided their focus would be in developing the perfect patient portal, increasing the utilization of patient portals, and support OpenNotes with data collection.

Products of the National HIT PFAC

Perfect Patient Portal One Page Information Guide

National HIT PFAC Perfect Patient Portal Slide Deck



Compensation Work Group

The Compensation Work Group is made up of PFAnetwork members and is guided by the commitment to increase the diversity of the patients and families that share their lived experiences to improve healthcare and serve in the role of Patient Family Advisor (PFA). A PFAnetwork member stated that “volunteerism is a privilege”. This has been a guiding statement for the workgroup. The workgroup aims to develop a call to action that leaves space for anyone with a passion to become an Advisor, who may not always have the resources to. Finally, we believe in the need to acknowledge Advisors who continue to represent the Core Competencies of Effective Advisors in their partnerships.

Products of the Compensation Work Group

Comensation Work Group Environmental Scan

Compensation Guidance


Opioid Response Work Group

Advisors from the PFAnetwork have grown increasingly concerned by the response to the opioid crisis which in some cases has appeared punitive to those living with chronic illness. PFAnetwork members have recognized a pendulum swing, which has also been recognized by leaders in the opioid response. The Opioid Response Workgroup was launched in April 2019 to formulate a thoughtful response to be sure vulnerable patients and their family caregivers are informing the response to the opioid crisis. They developed the four pillar Guide to Partnering to Manage Pain. The Opioid Response Workgroup plans to continue their work in 2020.

Products of the Compensation Work Group

Opioid Response Work Group Environmental Scan

Patient Guide to Partner to Manage Pain