The Coalition for Compassionate Care is dedicated to engaging palliative care patients and their caregivers, and providing opportunities to share their valuable perspective and elevate the authentic patient voice in health care communications.
Our most recent patient-engagement effort included recruiting, training and empowering patient and caregiver “ambassadors” for palliative care. The effort was funded by a Eugene Washington PCORI Engagement Award from the Patient-Centered Outcomes Research Institute® (PCORI®).
As part of the program, CCCC recruited a cohort of five socially-active patients and/or caregivers (e-Patients) to serve as palliative care advocates within their disease-specific patient-advocacy organizations and social media networks.
The e-Patient Ambassadors project is part of a portfolio of projects approved for PCORI funding to develop a skilled community of patients and other stakeholders from across the entire health-care enterprise and to involve them meaningfully in every aspect of PCORI’s work.
Our e-Patient Ambassadors are equipped, empowered and engaged in their health and health-care decisions, which allows them to be equal partners in their care with the health professionals and health systems that support them. Meet the e-Patient Ambassadors >>
The e-Patient Ambassador project culminated with a free webinar where the Ambassadors shared their experiences and lessons-learned and the publication of a Communications Plan designed to help other organizations develop similar e-Patient-centered communications efforts.
About Palliative Care
Palliative care is specialized health care for people with serious illnesses. Although palliative-care services are appropriate at any stage in a serious illness, and can be provided concurrently with curative treatments, many patients are unaware of the benefits of palliative care and may be reluctant to accept them. Supporting the integration of the key principles of palliative care into the messaging of existing advocacy organizations is hoped to drive consumer awareness (and ultimately consumer demand) for palliative-care services.
This project was designed to build on our earlier work with e-Patients, funded by the John and Wauna Harman Foundation, to develop relationships with the engaged patient community and identify ways to together in a campaign to expand the conversation about death and dying in the e-Patient community and make advance care planning a part of everyday life.
The e-Patient Ambassadors project was funded through Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award #8621-CCCC. For more information about PCORI’s funding to support engagement efforts, please visit http://www.pcori.org/content/eugene-washington-pcori-engagement-awards/.
Interested in more information on our e-patient work?
Kristine Wallach, Project Manager