Patient centered research focuses on mental health


Patient Centered: Comparative study will seek best practices for chronic care among mental health patients

Americans believe deeply in individuality, and the healthcare system is just beginning to acknowledge that demand. From personalized medicine to more convenient access, providers are moving toward improved service to the individual patient. Even lawmakers are mandating action.

The Patient Centered Outcomes Research Institute (PCORI) was created under the health reform law, and its goal is to determine not just the best options in clinical care, but superior care delivery that satisfies what patients value. What’s different about PCORI is that the comparative research it funds through tax dollars and private-market assessments must have specific patient-centered goals.

When Donna Keyser, senior director of the University of Pittsburgh Medical Center’s (UPMC) nonprofit Center for High-Value Health Care, found out that the organization had qualified for a PCORI grant, she felt a sense of validation for the legwork that the UPMC stakeholders had put into the application.

“When healthcare reform created PCORI, that institute really recognized for the first time across all of the different national agencies that have supported different types of research over the years, including the National Institutes of Health and others, that there are other types of stakeholders that need to get into the game of research,” Keyser says. “There’s a lot of research going on, but it’s not effectively and quickly getting translated into everyday practice.”

The center received $1.7 million in PCORI research funding for a pilot project to test two methods to promote health and wellness among adults with serious mental illness. Researchers will examine best practices for integrating physical and mental care.

Today’s patient

Anne Beal, MD, MPH, PCORI’s deputy executive director and chief officer for engagement, says the institute is keeping in mind the needs of today’s patients as well as their chosen priorities.

“We have now gotten to a point where everyone is unhappy about at least some aspects of healthcare,” Dr. Beal says. “That includes both patients and providers. Patients are increasingly not satisfied with their care, and doctors are not practicing the way they imagined they would when they went into medicine.”

For example, many primary care providers believe seeing more patients is the only way to increase income, but the time pressure detracts from patient care. Employers that pay substantial healthcare costs for employees also feel pressure to get more for their money but remain unsure how.

“As a result, this led to a convergence of different sectors of the healthcare community looking for a new way to conduct business that is more satisfactory,” Dr. Beal says. “While the concept of patient-centered care is not new-pediatricians were first talking about this concept in the late 1960s, for example-it is now getting greater traction and serious attention.”

PCORI’s $350 million 2013 budget is a testament to the motivation of stakeholders and policymakers who want to see the healthcare system oriented around patients while giving them comparative information on how discrete treatment choices stack up. However, the institute is several years away from publishing clinical research.

“The first projects we funded were a series of pilot projects, and results from those will start to come in in 2014,” Dr. Beal says. “Those projects were focused on best methods for engaging patents in research. Our first cycle of awards under our National Priorities for Research were funded in late 2012, and many of those are three-year projects. As a result, we can expect to see outcomes from those projects in late 2015 and early 2016.”

About two-thirds of PCORI’s budget is allocated to research funding and the remaining is divided up for dissemination of results, infrastructure, engagement, methods development and administration.

UPMC comparative research

Because PCORI seeks comparative data, UPMC will compare two interventions among nearly 3,000 Medicaid enrollees throughout Pennsylvania. Six sites will employ a web-based portal with care management and peer support (patient self-directed care), while five sites will offer personal interactions with embedded nurses during patient visits to community mental health centers (provider-supported integrated care). Both models will address chronic medical conditions.

The need for integrated care that includes mental health is great.

According to the National Association of Community Health Centers, 2 million patients a year receiving care at government-subsidized community health centers also are treated for depression and other mental conditions. A May 2011 article in the American Journal of Psychiatry found that health reform will result in an estimated increase of 2.3 million users of mental health services in Medicaid and nearly 2 million in private insurance.

While there are strategies to manage comorbid medical conditions among those with mental illness, providers are seeking guidance on how to tailor and deliver the interventions effectively. Keyser says behavioral and physical health systems have failed to systematically address and support prevention and wellness, especially among those with serious mental illness. For example, 68% of adults with mental health conditions also have medical conditions, many of which are undiagnosed.

The pilot began in May and will end in April 2016. Keyser says the $1.7 million grant is the largest award the two-year-old center has received to date.

Translate into practice

UPMC is an integrated delivery and financing system that includes a hospital system and an insurance services division, which covers 2 million members. Community Care is the insurance division’s not-for-profit behavioral health managed care organization, which is working with the Center for High-Value Health Care research arm on the PCORI project and investing financial and staff resources.

“UPMC truly believes that as an integrated delivery and financing system, we have a natural laboratory,” Keyser says. “We also have access to data, through our claims and through the provider network, and we also have existing collaborative relationships with all of the key stakeholders in the healthcare system.”

The size and scope of UPMC provides an advantage in research because the investigation teams can apply the findings directly during the project as milestones are reached. She says the traditional belief that it takes 17 years for best practices in research to translate to the point of care doesn’t always apply.

“What some people are researching can’t even be translated into practice because it’s so far afield from what actually happens in their everyday real world,” she says. “They set up projects, research studies and isolated research environments. And so, PCORI is forcing people to do research in the real world.”

Patient outcomes

For the UPMC project, known as “Optimizing Behavioral Health Homes by Focusing on Outcomes that Matter Most for Adults with Serious Mental Illness,” there are 11 community mental health centers of various sizes across Pennsylvania acting as the research sites to test the two types of wellness interventions: web-based and provider-supported. More than 100 staff members have been trained to deliver the models including 78 care managers, 18 peer support specialists (who are or have been patients themselves), and five nurses.

Providers and support staff will record evidence of what works not just from a research perspective but from a patient perspective.

“Our center brings all our stakeholders including our providers and including the patients into the process of the development of the idea,” Keyser says. “The members, the patients, the individuals receiving services from the mental health centers were involved in developing the applications. They actually refined the research questions and helped us to identify the measures that we  set up, that we would be collecting data around, because they were most important to them.”

Patients had the opportunity to refine research goals through focus groups and individual one-on-one interviews. She believes the patient involvement was key to earning the PCORI grant.

“They’re not interested in outcomes that a payer might be interested in,” Keyser says. “In fact, we can’t even include in the application outcomes related to cost.”

Keyser says the research isn’t designed to answer questions about cost, rather, it focuses on outcomes important to patients, such as their overall health status and levels of activation and engagement in care. The expectation is that improvements in patient-centered outcomes will translate to higher quality service delivery and related cost savings directly or indirectly.

“Even though we’re not looking at cost savings through this particular project, it is very likely that cost savings will accrue on the physical health side, which means they’re not going to accrue on the behavioral health bottom line,” she says. “Even though it’s the behavioral health providers who are putting up the resources to provide the additional support, [interventions] will improve the physical health condition.”

Delivery methods

While PCORI is focused on helping patients and clinicians make better decisions, the underlying driver is the ability to compare treatments, delivery methods and models against each other for effectiveness. Such comparative effectiveness research (CER) has been a long time in coming because of political resistance as well as a lack of substantial funding prior to health reform.

“Basically what PCORI is looking for applicants to do is to compare two different approaches to an issue that is important to patients and to try to understand for different types of patients which approach works better in terms of the outcomes that matter most to them,” Keyser says.

And PCORI expects some granular assessments, such as which type of intervention-in this case, self-directed or provider supported-works for which type of patient and why. The individualization of care is a key component.

For example, many UPMC patients with schizophrenia are also smokers, according to Keyser. Smoking cessation would be a logical program to offer with a web-based tool. Other tools help manage medication and prevention. The participating behavioral health centers are located primarily in rural areas of Pennsylvania where there is a scarcity of behavioral health professionals, so the online tools can help extend care beyond the centers.

The provider-supported study arm would offer similar programs in a more intensive approach.

“It requires more investment from the provider and the payer where we’re actually placing a nurse care coordinator in the community mental health center to actively engage with the target population of serious mental illness around helping them to manage their chronic physical health conditions,” she says.

Prior to the research program, the centers didn’t have clinicians to coordinate care for physical health, so the nurses are helping to extend care beyond the patients’ mental health conditions. Medication adherence, for example, is a key issue.

“The challenge with respect to the mental health population is that there has been in the past a tendency to focus on the mental health problems and to ignore a more holistic approach that recognizes that even patients with serious mental illness have the capacity to deal with other issues in their life that are equally important,” she says.


This article was updated 7-8-13 to change a word in a Keyser quote from "survivors" to "providers."

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