Patients as Palliative Care Ambassadors: Promoting the Authentic Patient Voice
A key element of providing patient-centered care is listening to the voices of actual patients. Several years ago, the Coalition for Compassionate Care of California (CCCC) set out to create relationships with seriously ill patients and their caregivers who could help us more fully understand the patient’s perspective and incorporate it into our work. We focused our outreach on engaged patients (e-patients) – individuals who were already active in patient forums and social media – and built relationships with a number of these diverse individuals in order to better understand their experiences, needs, and points of view in order to improve palliative care and the patient experience.
Working with Patients as Palliative Care “Ambassadors”
Our belief that e-patients are uniquely qualified to be effective communicators about palliative care led to an exciting 12-month project funded through a Eugene Washington PCORI Engagement Award from the Patient-Centered Outcomes Research Institute® (PCORI®) to recruit five motivated and socially-active patients or family caregivers to act as palliative care spokespeople and influencers, and create a model for expanding the role of e-patients as “ambassadors” for palliative care.
At the beginning of the project, CCCC engaged a videographer who conducted on-camera interviews with each ambassador and created a short video “introduction” that each could use in their social media. These videos are both inspiring and impactful, as the ambassadors share their personal stories. Click on each e-Patient’s name to watch their video:
To help increase the ambassadors’ understanding about palliative care, CCCC also hosted the ambassadors as attendees to our Annual Summit, where they were introduced to the palliative care community, and had opportunities to attend educational sessions and network with palliative care providers and other engaged patients.
We also provided the ambassadors with free access to CCCC’s library of pre-recorded webinars on palliative care, free registration to all newly developed webinars, and access to resources.
Throughout the project, CCCC helped support the ambassadors’ communications and outreach by providing them with a variety of palliative care resources and research findings, as well as sample messaging about the value of palliative care.
Over the course of the project, the ambassadors worked hard to expand their social media networks and share useful and educational information about palliative care, and they were very successful. The ambassadors followed each other on social media, amplifying and supporting each other’s efforts. They also created their own expanded palliative care networks by following and sharing with other palliative care leaders, e-patients from CCCC’s previous work, and researchers. At the conclusion of the project, the ambassadors’ cumulative Twitter following had increased by 144%.
“I am pleasantly surprised to have a number of Palliative Care thought leaders, a Congressperson, authors/journalists, and leaders of Medical/Disease-Specific Associations follow me,” said Selene Seltzer.
In addition, some of the ambassadors had opportunities to spread the palliative care message through in-person interactions and presentations to patient support groups, web-based patient chat rooms, American Cancer Society rallies, and one-on-one interactions with patients.
The ambassadors also wrote articles for newsletters and blogs, recorded YouTube videos, and even lobbied their elected officials around the Palliative Care and Hospice Education and Training Act (PCHETA).
Near the end of the project, CCCC gathered feedback from the ambassadors regarding their experiences with the project and partnered with them to create a toolkit outlining our project and key takeaways. The “Ambassador’s Guide for Creating and Maintaining an Effective e-Patient Communication Plan” includes sample messaging and resources, as well as the wisdom and experiences of each ambassador.
The project culminated in May 2020 with a free webinar hosted by CCCC where the ambassadors shared their thoughts and experiences. The ambassadors spoke about how important palliative care messaging had become to their communication to healthcare providers, patients, and families, and the importance of empowering patients to ask for palliative care services. Over 150 people registered to participate in the live webinar.
The ambassadors are now empowered to incorporate palliative care concepts into their work moving forward. “I feel significantly more confident in advocating for palliative care, end-of-life care, advance directives, POLST, and medical aid in dying as a result of being an e-patient ambassador,” said Grace Cordovano.
Shelly Reinhart agreed, and noted that having a better understanding about the difference that palliative care can make for a patient or family inspires her to share her knowledge with others. “When you or your loved one receives a cancer diagnosis you join a club that you never wanted to join. However, it is a club of people who understand what you are going through. It was great to connect with them about what palliative care is and what to ask for,” she said.
Continued Support for Expansion of Patients’ Voices
E-patients have been an active part of CCCC’s work for several years. Since 2016, e-patients have been incorporated into our Annual Summit – as both attendees and presenters. They have provided feedback on educational materials CCCC has developed, and helped produce and were featured in a short “Palliative Care: Good Medicine” video that CCCC shares via our website and social networks. The e-patient ambassador project is another important chapter in CCCC’s proud history of working with e-patients to support and promote the delivery of patient-centered care. We are committed to sharing the authentic patient voice through our work, and we are excited to continue our efforts with all of our e-patient partners.