e – Patient Ambassadors
Through our e-Patient Ambassadors project, the Coalition for Compassionate Care of California (CCCC) proposes to build upon our previous patient-engagement efforts by developing, implementing and evaluating a scalable, consumer-driven communications infrastructure which supports broad dissemination of palliative care principles and person-centered research results to consumers.
CCCC will develop a cohort of socially-active patients (e-Patient Ambassadors) with serious illness and their caregivers to serve as palliative care advocates within their disease-specific patient-advocacy organizations, and encourage these organizations to prioritize the dissemination of information related to advance care planning and palliative care.
- Recruiting and training small teams of e-Patient Ambassadors, advocacy organization representatives, and palliative-care experts who will work together to craft and disseminate information about palliative care, advance care planning and person-centered health care to a nationwide audience.
- Guiding and assisting each e-Patient Ambassador’s team in promoting palliative care information and research to disease-specific advocacy organizations.
- Creating and disseminating a toolkit of best practices to help all patients and advocacy organizations share information about palliative care, advance care planning and person-centered services.
The 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.
May 1, 2018 – April 30, 2020
The CCCC project is 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/.
- Create a sustainable communications infrastructure of motivated and socially-active patients and caregivers who are engaged in influencing large patient-advocacy organizations to proactively integrate the key principles of palliative care and advance care planning into the organizations’ regular activities and communications networks.
- Increase consumer awareness of the benefits of palliative care.
- Encourage change in the culture of healthcare to promote truly person-centered, family-focused, culturally-congruent care reflecting the values and preferences of those with serious illness.
- Competitively select five e-Patient Ambassadors who have an established social media presence and demonstrated effective communication skills to identify and engage a patient-advocacy organization.
- Provide education, resources, and support to the e-Patients and their aligned advocacy organizations to build a strong foundation for the shared understanding of key palliative care principles.
- Work with e-Patient Ambassadors to co-create customized, consumer-driven communication campaigns within each advocacy organization.
- Creation of a sustainable, scalable, patient-driven communications infrastructure which can be utilized to cost-effectively disseminate information about palliative care and person-centered care research and information.
- Patient-advocacy organizations will partner with an e-Patient Ambassador to promote advance care planning and key palliative care (and person-centered care) principle throughout the organization.
- Increased consumer awareness of palliative care services and benefits to spur increased demand and improved quality of care.
ROLE, RESPONSIBILITIES AND EXPECTATIONS
A selected e-Patient Ambassador will:
- Respond to surveys and requests for information in a timely fashion.
- Participate in trainings and convenings to increase knowledge about and comfort with palliative care. Participate in scheduled virtual meetings, as well as calls, as necessary, with CCCC and palliative care experts. In addition, you will be required to attend, in person, the 2019 CCCC Annual Palliative Care Summit in San Francisco (April 8-9, 2019), and 2020 CCCC Annual Palliative Care Summit (location and date to be determined).
- Work with palliative care experts to create and implement an education and communication campaign on palliative care.
- Serve as palliative care ambassadors within your disease-specific patient-advocacy organization (e.g. American Cancer Society).
- Encourage these organizations to disseminate palliative care information.
- Utilize your social media resources to disseminate information about palliative care.
- Present your experiences and findings at the 2019 and 2020 CCCC Annual Palliative Care Summits.
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.
e-Patient Ambassadors are individuals who are equipped, enabled, empowered and engaged in their health and health-care decisions, allowing health care to be an equal partnership between e-Patients and the health professionals and health systems that support them.
Disease-specific Advocacy Organizations Leaders
Our e-Patient Ambassadors will team up with one or more leaders from within each disease-specific advocacy organization. These organizational leaders will help the e-Patient Ambassador to better understand the culture of the organization and the opportunities for disseminating information and raising awareness of palliative care within the organization.
About Coalition for Compassionate Care of California
The Coalition for Compassionate Care of California (CCCC) promotes high-quality, compassionate care for people who are seriously ill or approaching end-of-life. CCCC is a statewide collaborative of organizations and individuals representing healthcare providers, assisted living facilities, nursing homes, hospices, consumers, state agencies, advocacy organizations, and other stakeholders. CCCC has a national reach and a proven track record for taking ideas into practice. Since 1998, CCCC has been leveraging its network of local coalitions, leaders, and physician champions to promote palliative care, culture change, and advance care planning throughout the state and nation. CCCC is building the foundation to make real change in the experience of serious illness and end-of-life by:
- Bringing together people with a passion for increasing access to palliative care to spark growth of the palliative care “movement.”
- Partnering with e-Patients (socially-engaged patients living with serious illness and their caregivers) and national patient advocacy organizations to disseminate palliative care principles through social media.
- Providing expertise, tools and resources to patients, families, providers, and policymakers.
- Leading efforts to train healthcare professionals about POLST, care planning conversations, and cultural diversity in end-of-life care.
- Promoting grassroots outreach, education and activation by working with local coalitions, health systems, community groups and faith leaders throughout the state.
This project builds on the work that CCCC did in 2016 with e-Patients, funded by the John and Wauna Harman Foundation, to develop relationships with the engaged patient community and identify how the Coalition for Compassionate Care of California can work with them to develop 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 Patient-Centered Outcomes Research Institute® (PCORI®) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work.
Interested in Joining our Project?
Kristine Wallach, Project Manager