Below is a guest post by Suzanne Mintz, founder Family Caregiver Advocacy about a summit where patients and caregivers were an integral part of the healthcare redesign process. More and more you will see us featuring meetings and conferences that include patients and asking others to include patients and caregivers. Suzanne is a social entrepreneur, family caregiver thought leader, author, speaker, advocate. 20 years ago she put a face on the issues of family caregiving when they were not recognized outside the aging community. 

She co-founded the National Family Caregivers Association (now Caregiver Action Network) and led the charge for recognition of family caregivers across the lifespan and as critical players in the delivery of chronic illness care. She retired from the organization in June 2013 and now runs her own consultancy: Family Caregiver Advocacy, where she focuses on issues of national importance that affect the health and wellbeing of family caregivers. Ms. Mintz is currently working on the need to have family caregivers identified on medical records, their loved ones’ and their own. Quote: “Family caregivers need to be included as members of their loved ones’ care team, given the education, training, and on-going support they need to bring about better outcomes and their own health and wellbeing.

The Summit on Identifying Family Caregivers (FCG ID) on Medical Records held October 25^th in Washington, DC brought together patients, caregivers, doctors, researchers, advocates, scientists, HIT professionals, health systems, insurers and others, 40 plus participants in all, to determine how best to incorporate family caregivers into electronic health records as members of their loved one’s care team with the goal of helping family caregivers improve patient outcomes and increase their own wellbeing.

This was a working meeting, the opening, and only, presentation reported on the results of a detailed environmental scan that was prepared specifically for the meeting. The meeting confirmed the common belief that family caregivers are not commonly identified in the American healthcare system.  Their names may be listed as next of kin or emergency contacts on a person’s EHR, but there is no record of the work they do to care for and treat their loved ones, and their own doctors, if they even go to one, are not aware of the extent of their caregiving responsibilities.

Attendees learned that family caregivers provide 87% of the long term care needed by persons with chronic conditions and disabilities, and 46%, almost half, of them provide medical and nursing services. Despite the extent to which family caregivers are embedded in the provision of chronic illness care there is no formal record of their existence, let alone the specifics of the care they provide.

As a group the healthcare providers and other professionals discussed the people, processes, and technology issues that would be involved in identifying family caregivers on health records. They broke into conversational groups of two to three to continue their discussions on a more individual level and then reconvened in five groups to propose ideas and mechanisms for implementing FCG ID.

The most intriguing idea proposed was that medical (health) records be redesigned so that they are more than repositories for work done under CPT codes and records of how medicine is practiced today, but rather be the infrastructure of where the practice of medicine is moving. If the patient and family are to truly be at the center of care, and their goals become their health providers’ goals too, then the electronic health record could serve as the enabler of both documenting and measuring progress of evolving care plans.

Next steps are the posting of the environmental scan and a brief recap of the meeting on the project web site to be followed by a more detailed narrative report that will be distributed widely. Additional research will be done, the outlines of a pilot project developed, and interested attendees and others will have the opportunity to participate in the on-going work.

The meeting was convened by Booz Allen Hamilton, the Coalition to Transform Advanced Care (C-TAC), Kaiser Permanente, and me (Family Caregiver Advocacy) and held at the Kaiser Permanente Center for Total Health.

Sponsors were Americas Health Insurance Plans (AHIP), Booz Allen, Care Innovations, Dana Farber Cancer Institute, Kaiser Permanente, and United Healthcare.