Millions of Americans suffer from diabetes, and every patient’s personal story – including their lived experience which influences eating, drinking, medication behavior, and exercise habits, is vitally important information for the physicians who treat them.

Physicians consider the patient’s story, their past histories and individual behaviors, to support patients in their attempts to follow recommended diabetes self-care (self-management), because self-care can drastically impact health outcomes. The vast majority of diabetes treatment outcomes are determined by health decisions are made outside of the clinical environment.

Physicians are well aware that they need to collect information to help them understand their patient’s story. This  psychosocial information includes information that helps them, for example, to understand their patients’ financial and social situation. Clinicians record the information they collect in EHRs. While many doctors know that EHRs are not designed to collect information that helps inform the patient’s “story,” new research by Assistant Professor of Library and Information Science Charles Senteio reveals opportunities to improve EHR capabilities and work flow process to improve the collection and use of this type of patient information.

In March, 2018, Senteio and his co-authors Tiffany Veinot, Ph.D, Julia Adler-Milstein, Ph.D. and Caroline Richardson, M.D, published their findings in the International Journal of Medical Informatics. Their paper, titled “Physicians’ Perceptions of the Impact of the EHR on the Collection and Retrieval of Psychosocial Information in Outpatient Diabetes Care” is the first study of its kind to describe physicians’ perspectives on how EHR adoption has impacted their ability to collect and use information that helps tell the patients’ story.

“The central point of the paper,” Senteio said, “is to highlight where capabilities need to be improved.”

Describing how their work compares to similar research in the health informatics field, he said, “We are not aware of another study that investigates providers’ perceptions of how EHR adoption has influenced the capture and use of psychosocial information to make clinical decisions for outpatient diabetes care. This is an important research topic, because, even with the wide-scale adoption of EHRs that help support clinical decisions, chronic disease disparities persist. And these disparities are, in part, driven by psychosocial factors, like financial strain and level of social support.

“Other studies have described how EHRs are not particularly adept at capturing psychosocial information. The novelty of this study lies in that we actually went to practitioners with experience with outpatient diabetes care to get their perspectives.”

Explaining how this paper will directly help improve EHR capabilities to enhance patient care, Senteio said, “We all have ‘self-care’ which for chronic conditions like diabetes basically boils down to four ‘behaviors’: 1) medication behavior, 2) dietary behavior, 3) attendance at follow-up appointments, and 4) physical activities. But few of us consistently have behaviors that align with recommended self-care (or sometimes called self-management). This study will help inform developers to direct enhancement to EHR capabilities to include the capture and use of psychosocial information, which include aspects of social determinants of health.”

Asked if doctors find current EHRs limiting and difficult to work with, Senteio said, “Well any clinician I’ve talked to is already well aware of EHR limitations! But while we continue to investigate the impact that environment and ‘lived experience’ has on health behavior, we must also understand what tools practitioners have in their attempts to support patients in these decisions. In addition to informing development of EHR capabilities by understanding our ‘systems’ limitations, I think it is important to illuminate the important role that psychosocial factors have in healthcare. I think this awareness can help spur increased practitioner-patient engagement. After all, if a ‘system’ requires that a practitioner inquire about financial strain, then that might prompt practitioners to engage differently with their patients, and vice versa.”

One aspect of their research that surprised Senteio was that “practitioners were so aware of the importance of psychosocial information, that they were so aware of how important these factors are in providing quality care in the outpatient setting. I was very enthused that these folks were so attuned to the importance of psychosocial factors.”

The paper concludes with the recommendation that EHR tools and workflows should be re-designed. Asked what ideal workflows and EHRs might look like, and how much he thinks they could improve outcomes for diabetes patients, Senteio said, “I don’t have enough background in clinical operations to state what ideal workflows would look like, but I can comfortably assert that closer to ideal would involve health information exchange for elements necessary for equitable care, and there is no quality care without equitable care. Period. This health information exchange should include psychosocial information like poverty, level of social support, and exposure to violence - including domestic violence.

“Obviously these factors are not at play equally for every patient, at every visit, but our workflows should enable this type of information exchange if pertinent, which of course include the practitioner-provider relationships necessary to facilitate this exchange. Also, I think allied health professionals are critical to help transform our system of care. For example, community health workers (or Promotoras), nurses, and social workers are critical parts of any ambulatory care team concerned with providing quality care, which of course means equitable care. Last, ideal clinical workflow will be informed by a wonderful quote written over 100 years ago by Sir William Osler, the father of modern medical education: “Ask not what disease the person has, ask what person the disease has.”

Asked how he initially became inspired to conduct this study, Senteio explained he can trace his interest back to college. “I worked through undergrad in various IT roles, including programming. That experience gave me a foundation for how developers and users can be fairly far apart in understanding each other, even in communicating level of needs (i.e., ‘nice haves’ vs ‘must haves’) and systems limitations. After business school I was an IT strategy consultant, and a big part of my work was in evaluating systems capabilities, and making recommendations for new systems. Very early in my healthcare experience I observed that psychosocial factors played a huge role in health outcomes because individuals were influenced by many factors outside of ‘personal choice.’ In fact, the health choices all of us make are inextricably linked to the environments where we live, work, and play. The choices we make are influenced by the choices we have.

“So, when I decided to go back to school to get a Ph.D. in information science, focusing on health informatics, I decided that I wanted to do my dissertation on something that might help address a persistent problem, health inequity. Also, I had done consulting work with physicians and healthcare executives, but by the time I was ready to firm up my dissertation project I had never done any research with practitioners, so my desire to expand my research experience beyond ‘patients’ was also part of the decision.

This paper resulted from Senteio’s dissertation project, and he said his co-authors were his committee members, so they had been working together at some level for years by the time they published the paper.

Describing how he and his co-authors pursued their research, Senteio said there were quite a few obstacles to overcome in order to gather the data.

“I certainly had to draw upon my personal and professional network to get the data,” Senteio said. “I had to call in more than a few favors to get 17 physicians to sit down and talk with me in person for an hour, in some cases an hour plus. Even more difficult was getting disparate groups of practitioners to fill out an online survey, which took about 20 minutes. So, I tapped several folks for help, and I am still uplifted when I reflect upon the support I received. There are many people who went out of their way to support this work, and I’ll never forget them. They’ll always be a part of whatever I’m able to contribute as a researcher.

“So along the way there were many people who helped me just get access to the data, then of course there was my dissertation committee that helped guide me throughout the process. While taxing and not an experience I ever want to do again quite like that, I am extremely thankful for the support I received, and that support helps inform my own mentoring activities.”

Asked what Senteio found to be one of the most rewarding parts of this research, he said, “I like going into communities – whether they be in Flint, Michigan, New Brunswick, New Jersey, Dallas, Texas, or even prisons – and listening to people tell their stories that help answer research questions. Collecting that data is special to me and represents a big part of the type of research I want to do at this stage in my career. I think it is also necessary to analyze it in the way to enable telling a story that not only offers meaningful contribution to the literature, but that also impacts individuals and communities. I am incredibly energized by the opportunity to address the daunting challenge of being a good steward of those intimate, precious stories.”