Lessons from NJ Contribute to National Guide on Complex Health Challenges

An initiative out of Camden and other cities in New Jersey is being transformed into a countrywide program to improve care for some often difficult-to-treat patients

poor people waiting room
Lessons learned in caring for residents with highly complex health challenges in Camden and other New Jersey cities — have now been woven into a national playbook that seeks to help organizations everywhere improve clinical outcomes and patient satisfaction while better controlling the cost of care.

The National Center for Complex Health and Social Needs, an initiative of the Camden Coalition of Healthcare Providers, unveiled the Blueprint for Complex Care earlier this month during its annual conference, held this year in Chicago. The center developed the guide with national partners based in part on new healthcare models — like Accountable Care Organizations, which seek to better meet a full range of health and social needs; these are now in use in several urban communities here; other input came from projects with similar goals in other parts of the country.

The 64-page blueprint outlines many of the barriers that currently prevent patients from getting effective care for their complex healthcare needs such as physical and behavioral health issues, plus social challenges like homelessness or poverty. It provides detailed recommendations and resources to help organizations build integrated systems to improve patient care and their quality of life. Effective complex care involves services ranging from clinical treatments and medication to housing, employment, nutrition, transportation and legal services, experts note.

The document is another important step for the center in coordinating and assisting healthcare systems, government entities, nonprofits and funders who are working to care for or support patients with complex needs; traditionally, these diverse groups have not been well connected. To address that, and to develop the guide, the center worked with like-minded national organizations (including the Center for Health Care Strategies, based in Hamilton) and a half dozen foundations (such as the Robert Wood Johnson Foundation, which also supports NJ Spotlight) that have long supported this and similar, local initiatives.

“It’s important to weave together these stakeholders,” said Mark Humowiecki, the center’s senior director and a lead author of the blueprint. “It is also important for the new publication to have real value in their daily jobs,” he added. “We don’t want the blueprint to be a meta-document about theories in the field. We want it to be a practical guide for how we do this work.”

Preventive care would save money

Research has shown that a small percentage of patients — those battling these complex-care needs — account for an overwhelming percentage of the medical spending in this country. They are often frequent visitors to local clinics or hospital emergency rooms, where they receive more costly care for conditions that might have been kept in check with lower-cost preventive treatments. In the Camden area, one in five patients absorbs $4 out of every $5 spent, according to Camden Coalition findings.

Leaders at the Camden Coalition — founded in 2002 by Dr. Jeffrey Brenner, a primary care physician who later received a MacArthur Foundation “genius grant” and now works for UnitedHealthcare — realized the problem was not specific to their South Jersey city, or even the Garden State itself. Conversations led to new collaborations and additional foundation support and, in 2016, the coalition launched the national center.

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Working alongside its partners, the national center soon began assembling a playbook to help others replicate the success achieved treating patients with complex needs in Camden, Trenton, Newark and other communities here and across the nation. The blueprint was shared with participants at the center’s 2017 conference, in Los Angeles, and refined through extensive literature reviews, interviews with key leaders, stakeholder surveys and a two-day workshop with other experts.

Through this process, the blueprint’s authors found that the diverse organizations involved in this work generally agree on the problems and goals, but they lack a shared identity or common language; plus, those who have valuable real-life experience don’t necessarily get heard. In addition, the metrics currently used to assess success in many programs tend not to reflect the full scope of an individual’s wellness or needs.

Organizations have also faced problems sharing data, with pushback from clinical organizations and insurance companies; experts said access to shared data is an essential factor in building an effective program. The report also warned of an overreliance on short-term funding. And providers struggle to be reimbursed for many services, including mental health and substance abuse treatments, the report notes.

A ‘pivotal moment’

According to the authors, the time to address these concerns is now. “The field of complex care is at a pivotal moment. Changing financial incentives and greater attention to health equity and the social determinants of health are fueling interest in complex care from government, payers, health systems, and communities across the country,” the conclusion reads.

To improve the system, organizations addressing complex care need to ensure they focus on the individuals involved in a way that is culturally and linguistically appropriate, the report notes, and make sure they can contribute to their own care. The process must involve a wide range of groups, working across multiple sectors to address legal, transportation, housing and other issues beyond the scope of healthcare providers. And it must be driven by quality data.

“We use data to drive decisions. We use data to impact people’s lives every day. It’s data in action,” explained Victor Murray, director of care management with the Camden Coalition.

“We are also very intentional about eliciting feedback,” Murray added, as well as ensuring those who have lived experience do more than participate but are heard. “It’s not just inviting someone to a meeting and giving them a title.”

Murray works with the Camden Accountable Care Organization, or ACO, whose work — along with that of programs in Trenton, Newark and Passaic — is reflected in the national blueprint. These entities have sought to share regional healthcare data and work to connect medical providers and social service groups in ways that better support patients in unique ways, officials said.

Going outside hospital walls

Mark Humowiecki
“We’re pushing beyond the hospital walls, into the world of the community, where people live,” Humowiecki explained.

New Jersey has also led by example when it comes to addressing certain social needs, including by embracing Housing First programs, which recognize that safe shelter is the first step in health and wellness, he said.

The blueprint seeks to organize these lessons in a way that other groups can easily use. It includes detailed guidance on how to identify the best models to implement, steps to help assess and codify standards and metrics, tips on engaging grassroots and high-level support, and how to sustain a culture of success over time. And it discusses how to gather, organize and drill down on the data to prioritize initiatives.

In addition, the document outlines ideas for developing sustainable funding sources and includes suggestions for advancing research to further the cause. It also includes resource lists, references and a sample survey for stakeholders to help get a complex-care organization started.

The blueprint “is as big as ‘how do we build a field and a national movement?’ but as practical as ‘how do I use this at work tomorrow?” Murray said.