The Beryl Institute Global Patient and Family Advisory Council consists of 15 people from around the world who come together to provide advice on the strategic and tactical direction of The Beryl Institute. Our role is to ensure that the voices of patients and families are central to the focus and decisions taken by the Institute.
Our members are people with chronic conditions, survivors, caregivers and family members whose collective purpose in our work is to use our experience as the guide to system and care delivery transformation.
While reflecting on our experience as members of The Beryl Institute community, it became evident that most patient and family advisors (PFAs) are working in relative isolation in their own organizations. Our council initiated an effort to begin the creation of a patient led and patient driven community within The Beryl Institute. This community will recognize the value of PFAs, honor their work and provide a platform where we share information, resources, education, stories, successes and failures, and through which we can have greater influence.
In the past year, we have focused on the necessary building blocks for a community with PFAs as peer members with access to all the robust offerings and resources of the Institute. The goal is to enable and empower, to build capacity and ability, and to maximize the opportunity of all PFAs to have the kind of impact that will catalyze the change necessary to improve the patient experience in care delivery and design, policy discussions, and research and development.
This has now brought us to the starting point for building our worldwide community that brings people from around the globe together in common purpose.
To that end, we have developed a three-step plan to build that community:
- Phase 1: Gather – We are reaching out to all engaged in The Beryl Institute community to identify PFAs within their institutions. We want to know who they are, where they are, what their roles are and how to best communicate with them.
- Phase 2: Inquire – We are committed to co-creation of a PFA Community movement. To achieve this, we will ask members what they want and need that will help improve the patient experience.
- Phase 3: Build – Based on what we discover, we will build the connections, resources and information the community has identified to build a working network with greater power to influence.
To start on Phase 1, we have a short survey (see link below). Please share widely. The patient and family voice is critical to what we all do. Increasing the impact of PFAs will reinforce their value and enhance the benefit not only to the individual organizations but to the entire patient experience movement. By creating this network PFAs will have the opportunity to be influential partners in the improvement of the patient experience.
Complete and share our survey: https://www.surveymonkey.com/r/PFA_Community
The authors are members of The Beryl Institute Global Patient and Family Advisory Council and form the steering committee for the development of the Patient and Family Advisor Community.