Kaiser National Policy Roundtable
In January of 2014, Kaiser Permanente, Physician-Parent Caregivers and the Society of General Internal Medicine co-hosted a roundtable to discuss issues related to the care of young adults with chronic health conditions. This two day meeting held in Washington, D.C. brought together a diverse group of policy, medical and advocacy stakeholders to take a first look at this population. The roundtable was intended to be the first of a series of efforts to involve multiple stakeholders and participants in the effort to move forward an agenda that benefits young adults, with chronic and complex conditions.
The specific goals of the roundtable were:
1. To determine what needs to be done to make this population a national priority;
2. To determine how to identify and classify this population in order to facilitate advocacy, research, and other efforts to understand and improve their health and quality of life; and
3. To determine the ideal patient-centered system of care that will optimize these young adults’ quality of life and independence.
The roundtable brought together a strong group of interested stakeholders and stimulated critical discussions and identified critical questions that must be answered to move forward transformation of the care and supports currently offered to young adults with chronic health care needs.
The roundtable began as any discussion of this nature should begin—with the patient’s perspective. Three young adults, each with different health problems, spoke to the group and while their experiences were in many ways different, they made a number of consistent points. First, they described a struggle to find the health care they needed. Each of them had at times experienced difficulty identifying physician practices that were either willing, or capable of managing their health care needs once they reached adulthood. They particularly struggled to find adult primary care practices. The common reasons for this difficulty were issues related to insurance, not knowing how or where to look to find physicians, and when they did find new physicians, ultimately discovering that they were not comfortable managing their condition.
The difficulty identifying physician practices was also impacted by the second issue they all agreed upon, which was that our current health care system is not suited to the mobility that is common amongst young adults. Young adults move for school, for jobs, or just because they want to live somewhere new, but geographic limitations to insurance coverage, lack of portability of medical records, and the above issues make this challenging for young adults with chronic conditions.
Finally, all three agreed that there needs to be a focus in the care they receive on issues beyond managing their health condition. Their focus is on careers, school, and maintaining a social life typical for their age. They all found that the health care they received was not helpful and at times didn’t even understand the importance of these things to them. They all talked about the impact their condition had on their professional and personal lives and the need for accommodation and assistance in these areas.
The group agreed that a definition is necessary and needed to be broad and inclusive. They acknowledged that a gap exists between a practical definitional framework that could be used to obtain the resources necessary to transform the adult health care system into one ready and capable of meeting the needs of young adults with chronic conditions and how young adults see themselves. They agreed that a practical definition was necessary though to enact change. While agreeing that any practical framework did not truly define young adults with chronic health conditions, they ultimately focused on identifying “at risk” young adults as this was consistent with how services were funded in childhood and in the geriatric population. It also avoided being disease specific, thus allowing for the inclusivity that was desired.
The most useful definition of an at risk young adult, seemed to be the young adult who, due to a chronic health condition, had an increased need for medical service use, an increased need for assistance with habilitation, and an increased need for vocational and educational support. It was argued that any transformative legislation would need to be budget neutral and a definition that identified high utilizers allowed for advocacy for services and support that could reduce existing costs.
The discussion about how to define this population ended with a review of what data currently exists to help to understand this population and where the gaps were. Do the resources exist to truly understand this population and the current clinical, vocational, and psychosocial outcomes? Are the resources available to support advocacy for transformational change and new supports for these young adults? Unfortunately, while there are existing large data sets that look at young adults, none exists that looks specifically at young adults with chronic conditions. The existing data do not provide the information necessary to support the goals of researchers, advocates, and of this population itself in seeking support from both private and public organizations.
The second day of the roundtable focused on discussing what the ideal system for caring for young adults with chronic conditions should look like. Building off of existing published guidelines and the work currently being done by the Center for Health Care Transition Improvement, the participants looked at what the key components of an ideal model for supporting and caring for this population, how to pay for it, and what if any evidence base existed to support the recommendations. The first of these questions seemed the easiest to come to consensus. How to pay for it and finding evidence to support the desired model proved a greater challenge.
In general, it was agreed that the ideal care model for this patient population should consist of the following:
1. A strong primary care component ideally in a PCMH model;
2. A multidisciplinary approach to care incorporating allied health providers including social work, case management amongst others;
3. Support across all aspects of life not just health issues, specifically vocational, educational, legal, and mental health concerns;
4. Portability with improved referral relationships and portable medical records to account for the mobility common amongst young adults; and
5. Better integration of the health care system with the education system and other state and federal agencies involved in supporting young adults and an increased focus on teaching self-management and health literacy.
Other discussed components included a greater use of electronic methods for communication including email and possibly virtual visits and increased partnership between adult and pediatric health care providers.
Regarding the need to make such a system available to young adults and how to fund it, the group agreed that it was not possible under a fee for service payment model as this offered no means to fund the residential and vocational needs of the population. A population based payment model, such as proposed for Accountable Care Organizations could work, but this would limit a young adult’s mobility. It also became clear that any system that sought to fund broader support beyond traditional health care for this population would be challenging to create just for young adults without being made available for adults across all age ranges.
In the end, a few needed steps were agreed upon, though no definite solution was offered. The agreed upon needs for transforming or creating a better health care system for this population included: a new generation of doctors trained to care for this population, a new infrastructure within primary care medical homes to allow for multidisciplinary care and case management, and a payment model that moved away from fee for service toward a population payment model in order to allow for funding of vocational, habilitation, and educational needs which ideally would be cost beneficial by reducing resource utilization.
The group was forced to conclude that no definitive data exist currently that proves what interventions, models of care, and types of support actually change outcomes for young adults with chronic conditions. While it was relatively easy to agree on changes to adult health care that the stakeholders felt would improve the quality of care for this population, and that many had personally seen help individuals they knew or cared for, large studies simply have not been done. Some small disease specific studies have been published but even this data is limited.
This led to the group’s final conclusion: more research and further study are needed to identify the ideal care model. It became profoundly evident, as the group moved through its discussion, that a large scale effort to examine the current care and outcomes of young adults with chronic health conditions was needed, and equally important, was support for research into how to improve these outcomes and research to determine what works.
In summary, the roundtable raised interesting discussions and well informed opinions on topics of import related to improving the care provided to young adults with chronic health conditions. Overall, the biggest need moving forward was a need for a detailed and expansive look at this population as a whole. More data on who they are, what their health outcomes are, and what their vocational and social outcomes are is what is needed. We need to better understand the care they are receiving, and given the variability, identify which models truly work to improve quality. This can only be done if there is an increased interest and focus on this growing and often neglected population.
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