The term “Patient Engagement” has been used more frequently since the passage of the Affordable Care Act in 2010 than ever before. There are many proposed definitions out there, but at its core the concept behind patient engagement is a simple one: When we are informed and proactive about something, we are more likely to succeed. Fifteen years ago, the LIVESTRONG Foundation was built upon this central notion – that providing people with the ability to understand a diagnosis and how it impacts their lives – practically, emotionally, and physically – puts them in the best position to move forward in the face of cancer.
Despite our commitment to this charge, there is no easy solution. As always seems to be the case, in health care things are slightly more complicated, and patient engagement is no exception. There are myriad challenges to getting patients involved in their care: paying doctors for the extra effort, proving long-term effectiveness to administrators, health literacy or socioeconomic barriers, and the evolution of technology and the way we process information.
The health policy journal HealthAffairs recently dedicated an entire issue to documenting the topic, drawing on the work of the Administration and government agencies, medical professionals, social science researchers and other policy leaders from the top health care systems, think tanks, and universities around the country. Over a dozen articles proffer definitions, frameworks, and models for patient engagement that both outline the challenges that lie ahead and the evidence that we’ve been making progress. For those interested in a synopsis, a high level brief has been made available. As the brief makes clear, patient engagement is a trend that is going to stick as health reform begins to take hold. As noted by the brief’s author:
“A growing body of evidence demonstrates that patients who are more actively involved in their health care have better outcomes and incur lower medical costs. This finding is motivating health care organizations to better inform patients about their conditions and care choices, so they can be more fully involved in maintaining their health and making decisions about their care.”
What is Patient Engagement?
Kristin Carman and her colleagues outline both a definition and a framework for how health care systems can engage patients. “We define patient and family engagement as patients, families, their representatives, and health professionals working in active partnership at various levels across the health care system – direct care, organizational design and governance, and policy making –to improve health and health care.” The figure central to their article represents the continuum of engagement and the various levels at which that can occur. We found it a useful framework for encapsulating some of the activities in which the LIVESTRONG Foundation is involved on a day-to-day basis, and have re-created that to reflect our own efforts to advance and provide patient-centeredness in cancer programs and services.
Patient Engagement at the LIVESTRONG Foundation
As Carman and her co-authors suggests, there is strong interplay between the various levels of the framework. For instance, our research program influences how we serve patients and engage them in developing or promoting policy recommendations. Likewise, patients help identify policy priorities through their healthcare experience, which are then translated through our patient or provider programs and services, and further explored by research studies. Each of the foundation’s core programs and how they fit into the framework is described below:
At the LIVESTRONG Foundation we listen to and communicate with survivors. It is how we have always designed our programs and services; as a direct response to the needs and gaps in services identified by survivors. Now we are replicating those programs through our Community Impact Project, which allows us to serve more communities faster by reducing the start up time for program delivery and increasing community engagement and program support locally through an online voting process. As we continue to consider the expansion and addition of new programs and resources we keep the patient voice at the center of our decision making process and we involved patients as key stakeholders in program design and evaluation.
The LIVESTRONG Foundation’s navigation services were built on the principles of listening to patient needs – through surveys, focus groups, data analysis and feedback – and ensure that anyone affected by cancer has the ability to have their physical, emotional and practical needs met to face their diagnosis. With an emphasis on decreasing distress and coordinating care among community organizations, the goal is to help people affected by cancer understand what to expect, learn what questions to ask and find local resources and feel supported during their cancer journey.
LIVESTRONG Foundation’s policy priorities are driven by feedback from cancer survivors, including patients or caregivers and families, as well as health care professionals and other stakeholders. Our patient-centered research surveys and studies reveal what is tantamount for people affected by cancer across the survivor continuum, including post-treatment and overall quality of life. We then engage patients to help develop and communicate our relevant policy recommendations by sharing their stories. Stakeholders are then mobilized as part of grassroots efforts and funding partnerships to drive policy analysis or advocacy campaigns that advance the foundation’s core policy objectives in the U.S. and around the world.
The LIVESTRONG Foundation’s Professional Education initiative brings cancer survivors and premier medical experts from different specializations together to create and provide evidence-based, patient-centered accredited continuing education and cancer care resources for healthcare professionals. We collaborate to bridge gaps in the continuum of care and empower health care professionals to better meet their patients’ needs at the time of cancer diagnosis, during treatment, and after treatment. We are also dedicated to reducing barriers that create disparities in screening, cancer incidence, treatment and survivorship among populations that are underserved.
Research and Evaluation:
Since inception, The LIVESTRONG Foundation’s research and evaluation efforts have been focused on survivorship and patient-driven issues. The LIVESTRONG Survey is used to turn information from thousands of survivors’ reported needs and challenges into evidence-based programs, interventions and policies. Specific research studies across the LIVESTRONG Survivorship Centers of Excellence – seven National Cancer Institute (NCI)-designed cancer treatment centers – focus on systemic survivorship issues such as needs of the adolescent and young adult (AYA) population, and the long-term impact of incorporating patient-centered interventions (e.g. provision of survivorship care plans, inclusion of Patient-Reported Outcomes (PRO) data) on health outcomes and provider workflow.
The LIVESTRONG Foundation will continue to work with patients, caregivers, post-treatment survivors, and other members of the delivery system to address today’s urgent needs. Moving forward, the Foundation’s commitment to the people affected by cancer will drive our understanding of the emerging challenges and opportunities that lie ahead.
Naveen Rao, MHS
Loyce Pace Bass, MPH
Ruth Rechis-Oelker, PHD
Melissa Stewart, LCSW
Lee Boerner, MS Ed
Devon McGoldrick, MPH