Jansson Secures Funding to Study Patient Advocacy

Bruce Jansson

An innovative funding award linked to national health care reform efforts will enable Bruce Jansson, a professor with the USC School of Social Work, to explore how health professionals can advocate for the needs of vulnerable patients.

The two-year $664,852 project is funded by the Patient-Centered Outcomes Research Institute (PCORI), an independent nonprofit organization established through recent federal health care legislation to promote research that helps patients and caregivers make better-informed health decisions. Jansson will focus on patient advocacy, an emerging strategy to address critical issues in the health care system.

“Professionals sometimes need to advocate on behalf of patients—those who are extremely sick or comatose, or those who are intimidated by the health care system,” he said. “In cases like that, professionals need to be advocates for them or partner with patients to empower them to get the services they need.”

The project will create new tools to measure various aspects of patient advocacy, including the extent to which medical residents, nurses and social workers champion the needs of their clients. It will also examine the organizational atmosphere in which advocacy takes place—the level of support for advocacy among hospital officials and the responsiveness of health care providers as a whole to the specific needs of patients.

Specifically, the project will utilize a sample of 100 social workers, 100 nurses and 100 medical residents from a variety of hospitals in the Los Angeles region—including nonprofit, for-profit, veterans, and public health providers—to develop, test and validate a handful of scales measuring attitudes toward patient advocacy, perceived organizational receptivity toward advocacy, desire for advocacy-related training and other key factors.

The project will supplement that data with focus groups and interviews with patients and health administrators to add their perspective on the prevalence of patient issues in health care and the necessity of advocacy.

During the past few decades, Jansson has largely focused his research on both patient advocacy and policy advocacy, two historically marginalized approaches to improving the health care industry that are now garnering increased attention due to President Obama’s Patient Protection and Affordable Care Act.

“It’s changing the medical system as we know it,” he said of the health care reform law, noting that a greater focus is being placed on low-income patients who experience health disparities. “They particularly need advocacy. They are impoverished; they often don’t have food on the table; maybe they’ve been evicted from their apartment. I suspect that the need for advocacy for those kinds of patients is going to be huge as we move forward. I don’t see how we can attack health disparities if advocacy isn’t a huge part of it.”

Jansson credits several relatively recent events for inspiring the current study. A decade ago, he worked with former doctoral student Sarah-Jane Dodd, now an associate professor at Hunter College and a consultant on the PCORI project, to analyze the extent to which 350 nurses and social workers in four local hospitals practiced advocacy. The data revealed that health professionals were powerfully influenced by whether they viewed their organizations as receptive to patient advocacy.

Jansson also recently published a book titled Improving Healthcare through Advocacy, in which he developed a framework for conducting patient advocacy. In the book, Jansson outlined seven major problems plaguing the American health care system that impede patient-centered care.

In addition to the rising costs of health care, perhaps the most visible issue in the industry, he noted that many patients experience violations of their ethical rights; can’t access preventive services; and receive care that is substandard, not culturally competent, doesn’t adequately address mental health or substance abuse problems, and doesn’t connect with the communities in which patients live.

Advocating on behalf of health consumers, also known as case advocacy, is one approach to solving those issues, Jansson said, yet it has received less attention than top-down strategies such as economic incentives and regulation. There are barriers to patient advocacy, including a lack of training, negative repercussions from superiors, and poor communication between physicians and other health care workers on ethical issues.

“Also, professionals don’t have much time,” Jansson said. “They feel they don’t have time to divert themselves to advocate for their patients.”

However, the attitude toward case advocacy is slowly changing, he said, noting that a growing number of clinics and hospitals are embracing the approach. The PCORI award is further evidence of the shifting landscape; Jansson’s proposal was one of only 50 projects funded by the institute out of approximately 850 applications.

Charles Kaplan, associate dean of research with the USC School of Social Work, said the PCORI award places the school in a promising position, especially as traditional sources of federal funding such as the National Institutes of Health hit a plateau.

“It’s significant because it ties us very closely to the future developments of the Affordable Care Act, especially if Obama is re-elected and the developments in health care continue in that direction,” he said. “We’re one of the 50 institutions that are in on the ground floor.”

The project has also bolstered a growing focus on organization and management research at the USC School of Social Work, he said, and inspired other faculty researchers to develop proposals for the next round of PCORI funding. Additionally, the study is a pilot project that, if successful, may spawn a larger study and continue to spur innovation and interest in patient advocacy.

“It’s not the total answer to problems in health care,” Kaplan said of patient advocacy. “There are 49 other projects out there doing other kinds of things. But this is one very important cornerstone.”

Once the project is complete, Jansson and his research team will seek to disseminate their findings in high-impact journals and at national conferences. He also plans to work with local leaders to ensure the results have an impact in the community. The ultimate goal is to produce materials that can be applied in other health care settings.

“At some point, I would love to move it to a national level,” he said. “There is a lot of interest growing in the use of advocacy in the health system; there’s just not a lot of research, and that’s where I hope this project can contribute.”

Jansson is also hopeful his work will continue an emerging trend in social work education. The Council on Social Work Education now requires schools to address policy advocacy in their curricula, but he said there is still more to be done.

For example, during the past few years, he has asked second-year master’s students entering his health policy class if they had discussed patient advocacy during their prior coursework.

“Uniformly, they would say no,” Jansson said. “We still have a long way to go in social work, and I’m certain that’s also true of nursing and medical fields to make advocacy part of our curriculum and practice. I feel it’s an ethical role we need to play when we see people in distress.”