Projects & Initiatives Briefing
We are pleased to announce the following project updates:
Consumer Research Symposium (CTAC – Gallup)
On June 27 2013, we successfully co-hosted a symposium reviewing two years of research on consumer knowledge, attitudes, and perceptions regarding advanced illness. Researchers, thought leaders, policy-makers/congressional staff, faith and diversity leaders, public polling experts, communications and marketing experts and public engagement stakeholders convened to increase the knowledge base and identify the best practices for consumer engagement.
We will be drafting a detailed consumer research brief. Once completed, it will be ready for dissemination and review. For additional information, please see:
Presentations from Event Speakers
Consumer Website – CareJourney.org
The consumer website is set to be released in late September. Current focus is on reviewing content specific to the four core topics: Care Options, Spirituality, Caregiving, and Financial Options.
A communication roadmap is being developed by Porter Novelli to offer strategies and tactics for the website launch. For content and resource development, members have been asked to submit materials to be integrated into the Care Journey website.
The conversation compendium project has been well received. This initiative is a compendium of consumer resources regarding advance illness and starting the conversation with family, friends and health professionals. The goal is to turn this compendium into a useful tool targeted at consumers and health professionals, which will be disseminated accordingly.
An overview of the site along with mockups are available here.
Care Chronicles Project
The Care Chronicles are real life stories that are carefully crafted to accurately portray the perspectives of the patients, caregivers, family and physicians’ true experiences with advanced illness issues. Our mission is to inspire and empower patients, families, and caregivers to begin the difficult yet necessary conversations about advanced illness by sharing stories through the art of narrative storytelling.
Lauren Van Scoy, MD will spearhead this initiative as lead editor. Initial phasing of this non-partisan effort will be to package this as a complementary initiative to the Care Options Policy Book. Our hope is to stimulate bipartisan participation among government officials on the Hill.
Topics to be covered include:
- Advanced Directives and Living Wills
- Financial Issues
- Legal Issues
- Hospice
- Palliative Care
- Disease specific issues (cancer, heart disease, COPD, etc)
- Caregiver burden
- Clinician Resilience
- Coordination of Care
- ICU Care
- Spiritual or Cultural Issues
Interfaith & Diversity Workgroup on Spirituality
- The formation of Subgroups around three interventions: (1) National Advanced Care Sabbath/Sunday; (2) Community Strategies; and (3) Knowledge/Best Practices Dissemination.
- The creation an Advisory Committee of national faith and diversity leaders to provide high-level strategic guidance to our work. Please submit recommendations for this Committee.
- The creation of a Planning Group for a November 14th faith and diversity leader consultation day in Washington, DC. This event will be targeted toward clergy with the broad purpose of empowering faith and diversity leaders to support their communities.
Event details can be accessed here.
Advanced Care Policy Options Book
The Policy & Advocacy Workgroup has been working on a comprehensive report detailing the array of past and current policy proposals touching on eight identified areas of advanced illness care that require interventions in order for C-TAC to achieve its overall mission. Those areas include:
- Advance care planning;
- Consumer and family caregiver education, information, and support;
- Quality standards; professional education;
- Payment & regulatory reform;
- Health and health information technology; and
- Research.
As C-TAC continues to develop policy proposals based off its best-practices clinical models development, counsel from professional education experts, and advice from public education and engagement professionals, this report will serve as a useful benchmark as we seek to translate common-sense solutions into effective public policy proposals that can be implemented into law. This will also serve as a useful tool in educating key policy makers on the breadth of public policy issues that influence the experiences of Americans with our currently fragmented, disjointed approach to advanced illness care. C-TAC intends to release the report following the Congressional August recess and actively seeks the input from interested stakeholders.
For more information about our current projects and initiatives, please contact us.
