ConnectShareCare builds connections among care partners of people with serious illness

Abstract

AbstractPeople living with chronic illnesses naturally turn to peers and community members to address the need for emotional support, practical advice, and quick help with emergent problems. Health systems have been slower to incorporate the expertise that comes from patients and caregivers/ care partners’ lived experience into the design and delivery of care.A coproduction learning health system model aims to draw on the expertise of all to deliver optimal “whole person” care and to capture learning for improvement in the process of care delivery. This model harnesses naturally occurring peer‐to‐peer connections outside the traditional healthcare system into facilitated support networks, which extend the scope of services offered by the health system to support lay care partners, thereby improving their resiliency and inviting them to share their expertise with others.With patients and care partners, we co‐designed and piloted an online facilitated support network, connectsharecare.org, to help persons providing care or support to an adult with a serious illness better prepare to cope with surprises that arise post diagnosis and/or during bereavement. The team prioritized two network functions (1) connecting care partners to information and (2) facilitating emotional support.Between its launch in April 2021 and January 2023 the network has grown to more than 200 members with more than 3,500 posts over 21‐months. Most members report satisfaction with the support and information received, and say that the network helps them find meaning and purpose by supporting others. The most frequently used discussion threads focus on well‐being, emotions, and sources of joy and hope. The network is being adapted and improved as we learn from the data generated.It is feasible to engage a multi‐stakeholder team to co‐design an online peer‐to‐peer facilitated support network for care partners of people with serious illness. ConnectShareCare is valued by care partners. This work has the potential to contribute to a coproduction learning health system for people living with Alzheimer’s disease and other dementias by (1) prioritizing and addressing potentially unique needs of their care partners, (2) generating data for continuous quality improvement, and (3) contributing to scientific knowledge.