By Kathleen Noonan, Edward Schor
Pediatric healthcare providers have long understood the power of social relationships, recognizing that maintaining and improving children’s health and promoting their development is a team effort involving the child’s family, healthcare providers, and a wide variety of others in the community. They, along with others, have embraced the idea that health is not a function of biology alone and thus are paying greater attention to the personal and social context of their patients. A consequence of this broader view of health is recognition of the commonalities of providing complex care regardless of the patients’ age. Pediatric and adult complex care providers are both increasing their attention to families, social networks, and the social determinants of health.
A recent report by the Lucile Packard Foundation for Children’s Health (LPFCH), based on a survey by The Commonwealth Fund, found that adult and pediatric providers share many challenges associated with chronic condition care management. These similarities, as well as a growing understanding of the toll that personal and social factors take on mental and physical health, especially social isolation of patients and their caregivers, tell us that there is an opportunity to adapt the insights of pediatric medicine to the needs of adult populations and vice versa. Based on these findings, the Camden Coalition of Healthcare Providers (the Camden Coalition) is working with LPFCH to share lessons based on a belief that engaging families and broader social networks is vital to addressing the social determinants of health and improving practice.
Addressing complex health and social needs in children and adults
The LPFCH is a public charity committed to improving the systems of care on which children with chronic and complex healthcare needs and their families depend. To advance this agenda as it applies to pediatric complex care, LPFCH is supporting work by the Oregon Pediatric Improvement Partnership (OPIP). OPIP has been working with Medicaid Managed Care partners and Kaiser Permanente Northwest to assess medical and social complexity in populations of children and to explore how care may be designed to improve health outcomes. A key principle in developing and implementing pediatric complex care models is that pediatrics routinely assumes and encourages family involvement in care planning, including family team meetings to ensure clinicians and caregivers are on the same page.
For over a decade, the Camden Coalition has been innovating and piloting adult healthcare delivery models in order to improve patient outcomes and to reduce the cost of their care using data-driven, human-centered practices. One of the organization’s key initiatives is the Camden Core Model, its care management program. Following the principles of trauma-informed care and harm reduction, the goal is to empower patients with the skills and support they need to avoid preventable hospital use and improve their wellbeing.
In 2016, the Camden Coalition launched the National Center for Complex Health and Social Needs to gather and share lessons about complex care from communities around the nation. Through its local work in Camden, the organization has found that it is impossible to achieve lasting improvement for adults with complex health and social needs without considering their larger network of supports and services – the very same sort of inquiry pediatric complex care undertakes regularly.
Because social isolation is one of the biggest risks the Camden Coalition’s clients face, its care teams identify and collaborate with patients’ social supports to ensure that they continue to make progress toward better health and wellbeing after graduating from the Core Model program. On a city-wide scale, the organization recently launched a pilot program through its Health Information Exchange whereby individuals that are part of faith communities can allow their clergy to be notified if they are admitted to the hospital. Whether it is formal family structures, extra-familial relations, or other, informal community supports, connecting healthcare and social service providers to these networks appears to have just as much salience for adult as for pediatric complex care patients.
Sharing lessons in complex care
While some social risk factors for children are different from those of adults, there are many similarities, e.g., homelessness, poverty, and exposure to, or victimization from, domestic violence. It is also true that in the context of support systems, adults differ from children in two obvious and important ways: they may not have identifiable or reliable family networks, and their social networks may also be unstable or weak. But we are identifying a number of promising approaches to strengthening individuals’ social networks, some of which are applicable to children and their families.
Supportive housing and addiction recovery programs strive to build social support structures around clients who may have strained or broken relationships with their families, and addiction recovery peer models create strong social networks through integrating individuals with lived experience into the care delivery structure. When caregivers are present, they too can benefit from social support to allay depression and anxiety. Advocacy by AARP has resulted in many states recognizing the important and growing role that families and other social networks play in improving the quality of healthcare and reducing its cost. The Caregiver Advise, Record, and Enable (CARE) Act, which is now law in nearly 40 states, requires hospitals to identify a primary caregiver of an adult patient, keep them informed, and educate them about what to do when the patient is discharged.
Implementing lessons in complex care
Adult medicine can adopt these tactics even in the absence of formal programs by building on existing systems and informal supports that may surround patients, and/or connecting individuals to new supports. In pediatrics, there is an established pattern of linking families of children diagnosed with complex conditions to other families who have experienced similar circumstances. Federal grants to states from the Maternal and Child Health Bureau assure a modest level of family-to-family supports are available. In the case of adult care, providers might ask an adult patient to bring a trusted friend to an appointment. In other cases, it might mean encouraging a patient to forge new relationships with friends and neighbors or to reconnect with out-of-touch family members.
As healthcare providers to adults consider the social determinants of their patients’ health, they should keep in mind the importance of engaging and strengthening their patients’ social networks. And as the Camden Coalition begins to include families and social networks into its complex care models, the organization intends to seek advice and best practice models from those, such as pediatric care providers, who have accrued experience using family-centered, community-based medical homes.
Kathleen Noonan, JD, is CEO of the Camden Coalition of Healthcare Providers. Edward Schor, MD, serves as Senior Vice President, Programs and Partnerships, at the Lucile Packard Foundation for Children’s Health