Project ECHO: An Effective Means of Increasing Palliative Care Capacity
Sanjeev Arora, MD; Tracy Smith, BS; Jennifer Snead, PhD; Sarah Zalud-Cerrato, MPH; Lisa Marr, MD; Max Watson, MBChB; Sriram Yennu, MD; Amy Bruce, MPP; Chris Piromalli, DO; Stacy Kelley, MPH; Nandini V
Globally, the need for integrated palliative care has never been greater. Populations are aging, and rates of terminal non-communicable diseases continue to progress. Approximately half of all patients with cancer, for example, will eventually succumb to their disease—nearly one-third of cancer deaths happen within 6 months of diagnosis.1 Organizations, such as the National Academies of Science, Engineering, and Medicine (formerly Institute of Medicine) and the American Society of Clinical Oncology, recommend full integration of palliative care as a routine component of comprehensive cancer care.2 Integrated palliative care—which encompasses coordination of care for multiple severe, complex conditions; behavioral health concerns; and end-of-life care—can provide symptom control, psychosocial support, and coordinated transitions of care for patients and their families.3-5
Yet, as Atul Gawande, MD, MPH, documented in his 2010 book, Being Mortal, best practices and innovations in creating or maintaining quality of life (QOL) for individuals nearing the end of their lives, or faced with life-threatening conditions, are not readily accessible to those who need them most.6
Despite ongoing efforts to incorporate palliative care concepts and training in medical and nursing education,7 barriers to access persist, and palliative care remains an insufficiently researched topic.8 The World Health Organization estimates that 19 million adults across the world are in need of palliative care, the majority in low- and middle-income countries, but that in many areas, the level of palliative care provision and access to services remain extremely limited and clinicians often lack the capacity to provide care to all in need.9
In the United States, large regional disparities in access to palliative care exist, especially in rural areas and among medically underserved populations.10 The number of palliative care specialists falls far short of demand, exacerbating geographic, racial, and economic disparities in access.11,12 Culture- and country-specific assumptions, perceptions, and laws about palliation, pain relief, and drug prescription/use are also significant impediments to effective palliative treatments.13
To overcome the gap between the growing need and the limited resources for palliative care around the globe, a transformative educational intervention is necessary. Such an innovation must effectively disseminate the principles, best practices, and applications of palliative care concepts for the frontline healthcare practitioners who serve communities most in need of that care. For the past 14 years, Project ECHO (Extension for Community Health Outcomes) has leveraged its innovative technology-enabled model for healthcare education to address global disparities in healthcare access for complex chronic conditions such as hepatitis C, HIV, tuberculosis (TB), and opioid use disorder. The ECHO model, which fosters and sustains communities of practice that bring together primary care clinicians with interdisciplinary specialist teams for ongoing case-based learning, mentoring, and sharing of best practices, also has the potential to tip the scales of the world’s integrated palliative care crisis. This article describes the work of 7 of Project ECHO’s replicating partners from around the world who are implementing the ECHO model to address the knowledge gap that underlies this crisis.
Project ECHO improves healthcare workforce capacity and increases access to specialty care for the world’s rural and underserved populations. A low-cost, high-impact intervention, Project ECHO links expert multidisciplinary specialist teams with frontline community healthcare providers via ongoing videoconference-enabled sessions. In these teleECHO clinics, specialists share their expertise and community providers share their experience with individual patients via case-based learning and telementoring. Overall knowledge is enhanced as cutting-edge research, treatments, and best practices from academic and research centers are tested and refined through ongoing discussion and application within community- and culturally-specific contexts on the ground. Participating community providers do not need any additional equipment to participate other than a laptop enabled with internet and a videocamera. The ECHO model builds and strengthens communities of practice through latitudinal learning and the free exchange of knowledge: all participants teach, and all participants learn from one another. Community providers develop the capacity to care for patients with complex conditions where they live.
Project ECHO benefits not only patients in need of care, but also the providers who care for them. The communities of practice built through regular teleECHO clinics reduce professional isolation for providers located in rural areas, building networks and new opportunities for collaboration.14-17 These additional resources and opportunities support clinic staff retention and increase professional satisfaction.18-21 The peer support and mentorship that teleECHO clinics provide enable critical incident stress debriefing and self-care strategies, reducing provider burnout.
Project ECHO moves knowledge, not patients (Figure 1). It provides increased access to high-quality healthcare and reduces travel to, and wait times at, centers of medical expertise. The ECHO model, originally designed and implemented in 2003, addressed the lack of hepatitis C care across rural New Mexico. Within 18 months of establishing the first teleECHO clinic sessions, which connected primary care providers and community health workers around the state with a multidisciplinary specialist team at the University of New Mexico (UNM), wait times at the UNM hepatitis C clinic had dropped from 8 months to 2 weeks. Rural providers reported a greater sense of self-efficacy and confidence in treating hepatitis C patients in their own communities. Subsequent research demonstrated that the cure rate of those providers was the same as that in the UNM hepatitis C specialty clinic.14
Fourteen years later, Project ECHO has grown from 1 program serving rural New Mexico to over 110 partners in over 20 countries addressing over 55 conditions. The ECHO model has proved effective for hepatitis C treatment in the US Department of Veterans Affairs,15 for training primary care providers in the provision of buprenorphine for treatment of patients with opiate use disorder,16 and improvements in clinician geriatric mental healthcare knowledge/treatment and decreases in emergency room costs for their patients with mental health diagnoses.17 Providers participating in teleECHO clinics regularly report increased professional satisfaction and a reduced sense of isolation, along with improved self-efficacy and capacity to care for their patients.19-21 Globally, the ECHO model is being deployed in Europe, Asia, Africa, and India to expand frontline health workers’ capacity to care for underserved populations across complex chronic conditions like HIV, cancer, hepatitis C, multidrug-resistant TB, and behavioral health.
Project ECHO provides a unique model to address global disparities in access to palliative care. The ECHO model has been replicated by early adopters to expand, support, and disseminate knowledge of primary palliative care to providers working with rural and underserved populations, enabling them to address the complex needs of their patients with advanced serious illness. In its focus on ongoing mentorship and development of multidisciplinary communities of practice, the ECHO model is particularly suited to palliative care, which at its best involves care teams supporting patients and their families in the transition from medical support for a specific condition to a focus on overall QOL. Each of the brief narratives below recounts the experience of implementing ECHO for palliative care from the perspective of 7 of our replicating partners (also, see Table).
The UNM Experience
The UNM Hospital started the first palliative care teleECHO clinic in 2011. Pre- and post-surveys of participants have demonstrated improved self-efficacy (P = .0073) and greater knowledge of pain and non-pain symptom management with participation (P = .0156).22 In the fall of 2017, a new session of the UNM Palliative Care ECHO will begin, this time with a focus on primary palliative care for non-specialists of all disciplines. In preparation for this next phase, members of the teleECHO clinic specialist team are traveling around the state to conduct needs assessments and discuss potential benefits of this clinic with nonspecialists.
Northern Ireland Hospice
Northern Ireland Hospice first implemented ECHO for palliative care in 2014 under the leadership of medical director Max Watson, MD. Community hospice nurses (CHNs) who were employed reported that ECHO created a safe space for those working in isolation to talk about and learn from failures and successes in their own work, and to support each other. The original 6-month pilot was evaluated using a mixed-methods prospective longitudinal cohort study involving 28 CHNs. Mean knowledge scores improved significantly, as did overall self-efficacy scores. Seventy percent of CHNs reported that the technology used in ECHO had given them access to education that would have been hard to access due to geography. The study provided evidence for Project ECHO-connected networks of CHNs as an affordable solution to the United Kingdom’s growing need for hospice and palliative care. The Northern Ireland Hospice has become an ECHO superhub, and in partnership with the Health and Social Care Board of Northern Ireland, has launched 19 different teleECHO clinics, many of which address integrated palliative care.
Northern California-based ResolutionCare launched a palliative- care-to-primary-care teleECHO pilot program in September 2015. Working with Partnership HealthPlan of California, a non-profit healthcare organization contracted with the State of California to administer Medi-Cal benefits, ResolutionCare implemented the ECHO model to provide hospice and palliative medicine training to primary care teams at 10 federally qualified health centers throughout Northern California.23 In addition to using ECHO for developing palliative care curricula and networking community partners with physicians and other healthcare professionals, ResolutionCare’s pilot explores value-based systems of payment. After April 2017, when California Senate Bill 1004 on Palliative Care goes into effect, standardizing value-based systems statewide, the ResolutionCare’s pilot program will become an ongoing initiative to address California’s exploding demand for palliative care.24
The palliative care service of Montevideo’s Hospital Maciel in partnership with Universidad de la República, started a palliative care teleECHO clinic in August 2015. Prior to this, the ECHO model had been implemented to train hepatitis C providers in Uruguay. The palliative care teleECHO clinic for adults created an interdisciplinary network of health professionals who assist patients in advanced or terminal stage of their disease throughout the country. Multidisciplinary specialist teams collaborate with providers in comprehensive patient and family assistance, collective decision-making, and a holistic, QOL approach to patient care. Watson, of ECHO Northern Ireland, traveled to Uruguay during the initiative’s planning stages to engage local providers, share best practices for utilizing the ECHO model for hospice and palliative care, and learn about how palliative care is practiced in Latin America. Watson’s mentorship at the beginning of the teleECHO palliative care clinic in Uruguay further demonstrates the collaborative potential of the global ECHO network.25
MD Anderson Cancer Center
In May of 2016, the Department of Palliative Care, Rehabilitation, and Integrative Medicine at the University of Texas MD Anderson Cancer Center launched its Palliative Care ECHO Telementoring Program (ECHO PACA) in collaboration with clinicians in South Africa, Zambia, Kenya, Nigeria, Ghana, Brazil, and Mozambique. ECHO PACA’s goal is to build a network of palliative care experts in Africa, connecting experts and providers through the ECHO model to provide increased access and quality palliative care for patients with life-limiting cancer diagnoses.26
Alaska Native Tribal Health Consortium
The Alaska Native Tribal Health Consortium (ANTHC) in Anchorage is America’s largest and most comprehensive Native-owned health services organization. It serves over 150,000 Alaska Native people statewide, representing 229 federally recognized tribes. Through the Alaska Native Medical Center, ANTHC began offering oncology-based comprehensive palliative care services in October 2015 and launched a palliative care teleECHO clinic in the spring of 2017, extending palliative care services to inpatient, outpatient, and rural settings across the Alaska Tribal Health System. Project ECHO will enable ANTHC and tribal partners to utilize existing resources to support patients, families, providers, and communities throughout Alaska, providing support and mentorship for the development of community-based palliative care resources. The goal of the ANTHC Palliative Care Project ECHO is to establish regional palliative care resource teams throughout the state to offer primary palliative care support to patients and families facing advanced serious illness.
Trivandrum Institute of Palliative Sciences
In India, the Trivandrum Institute of Palliative Sciences (TIPS) implemented the ECHO model for palliative care in January of 2017. This teleECHO clinic aims to strengthen the palliative care knowledge and capacity of practitioners from India and neighboring countries (including Nepal, Bhutan, and Bangladesh). TIPS conducts its teleECHO clinic with technological support and guidance from the Project ECHO superhub team based in Delhi, further evidence of the capacity of the global ECHO network to provide mentorship and support across regions and conditions.27
The ECHO Institute in Albuquerque, New Mexico, is also leading a Palliative Care ECHO Collaborative, a broader community of practices that connects all ECHO replicating partners working in palliative care to share best practices and strategies for addressing the global palliative care crisis. The collaborative is exploring opportunities to engage in collective research and the development of a palliative care curriculum and certification that can be standardized for primary care clinicians and other healthcare providers around the world. Delivered through the culturally adaptive ECHO model, this curriculum and certification could then be effectively modified by palliative care ECHO teams working in diverse geographic areas to suit the specific needs of participants.
The network of palliative care practitioners, researchers, and interested partners built by the Palliative Care ECHO Collaborative would also shape the development of best practices and serve as a catalyst to raise awareness about global palliative care needs. Such conversations are already well underway: in India, for instance, the ECHO model has become useful for conversations with the oncology community regarding the scope of palliative care across the cancer spectrum. India’s National Cancer Grid, which connects 106 cancer centers,28 has included palliative care experts in its ECHO virtual tumor board. The engagement and dialogue among participants opens up possibilities for mutual learning and further collaborations in transforming quality of care provided and perceived.
There is growing national and international interest in palliative care but a recognized inability for specialists to provide such care to the patients and families who need it most. Project ECHO is an effective solution to the problem of disseminating the skills and expertise of centralized palliative care specialists to the frontline primary care providers working in geographically, culturally, and economically diverse communities.
The ECHO model can assist healthcare providers, medical staff, and community members to acquire new skills, competencies and best practices in palliative care. By working with administrators and community leadership, efforts to improve the QOL and coordination of care for patients with advanced serious illness will also help identify and address local, national, and regional gaps and needs in healthcare resources, services, and support. As the Project ECHO network in palliative care grows, so does the global stock of palliative care knowledge and best practices, as partners continue to teach and learn from one another in ever-widening communities of practice (Figure 2).