Department of Community Health Systems
Utilizing Innovative Methods to inform Patient-Centered Interventions in People with Epilepsy
My program of research has been focused on generating knowledge that can be translated directly into practice to improve the lives of people with epilepsy, particularly with regard to self-management. All chronic diseases, including epilepsy, require self-management on the part of the patient; self-management in epilepsy is particularly complex, and influences important outcomes such as social functioning and quality of life. My entire program of research has been devoted to generating knowledge that can be translated to improve the day-to-day self-management, and thus outcomes, of people living with epilepsy and other chronic conditions. Some of my prior work has already been translated. For example, the epilepsy-specific, temporally-sensitive Life Changes in Epilepsy Scale that I created and psyhometrically tested with an inter-disciplinary team from Medicine (Dr. Dragos Sabau) has been translated into practice at IU Health, New York University, and in other countries (United Kingdom and Italy) for use in measuring changes in epilepsy-related quality of life in people with epilepsy; the tool is designed for clinical use prior to the beginning of a clinical exam by a neurologist or epileptologist, and allows the provider to determine areas of quality of life needing intervention. The Life Changes in Epilepsy Scale allows the practitioner to evaluate epilepsy-related areas of quality of life over time, allowing for interventions/alterations in care to be tracked over time with regard to their impact on quality of life. This tool has also been used in multiple studies to measure outcomes associated with interventions. I have collaborated with NYU epileptologists to investigate the ways in which different providers discuss Sudden Unexpected Death in Epilepsy (SUDEP), the leading cause of death in people with epilepsy. Findings from this study directly influenced the American Epilepsy Society's white paper on practice guidelines for discussing SUDEP with patients with epilepsy and/or their parents/caregivers, which will help ensure that those affected by epilepsy are given timely, accurate information about SUDEP, conversations about which have historically been avoided by epilepsy care providers. In 2015, I became director of the IU School of Nursing's Social Network Health Research Laboratory, an interdisciplinary lab focused on using Big Data machine learning methods to capture the patient voice, which is then used to build optimally patient-centered interventions. Our lab gained exclusive access to both the ChaCha (text-based question and answer database) data, which contains more than 1 billion individual queries, as well as the online message board data from The Epilepsy Foundation of America, containing 15+ years of user posts and questions related to epilepsy (~500,000 posts). Using the Epilepsy Foundation data, I collaborated with with Informatics researchers (Dr. Luis Rocha) to mine the data in order to identify patients' most pressing concerns regarding epilepsy. We found that the most significant concerns in the Big Data were not represented in the existing literature. These findings were shared with the Epilepsy Foundation of America, which updated their programs to reflect these new findings (e.g. based on our results, they added alcohol consumption-related content to their existing programs for people newly-diagnosed with epilepsy). Similarly, I have collaborated with Kinsey Institute scientists (Drs. Justin Garcia and Amanda Gesselman) Big Data to investigate the most salient concerns in people with epilepsy. We found that sex-related questions were very prevalent in the data. Using machine learning and topic modeling, we were able to identify the main areas of sex-related issues faced by the message board users. These findings are especially important given that no existing interventions or programs for people with epilepsy addressed sex-related problems in this population. We received funding to test the relationship between intimate relationship characteristics and epilepsy outcomes, which we are currently doing, and will be using these findings to inform development of a quality of life-enhancing intervention for people with epilepsy. Supported by grants from the Center for Translational Science and the National Library of Medicine (NIH), Drs. Rocha, Borner, and I have leveraged my prior work surrounding self-management and salient patient needs to develop and test an epilepsy self-management intervention that is highly scalable and sustainable. The first of its kind, myAURA is a web-based intervention that uses machine learning and artificial intelligence to provide users with individualized, theory-based self-management enhancing content but does not require a human interventionist; the potential impact of myAURA in improving the self-management and health of people with epilepsy in all geographical areas is very high given its scalability and financial sustainability. We are in our third year of this R01. Curing the COVID-19 pandemic, my research team comprised of PhD students and post-docs from IU School of Nursing, as well as Informatics researchers, and I implemented a research study to capture the ways in which the pandemic was affecting the management of chronic diseases, particularly epilepsy. Using surveys, psychometric instruments, and open-ended questions, we were able to determine that the pandemic has significantly altered the ability of people with epilepsy to manage their disease, particularly with regard to obtain medications, communicating with health care providers/seeing health care providers for epilepsy-related care, and a significant increase in emotional symptoms, which are a common trigger for seizures. These results are currently under review in the peer-reviewed journal Epilepsy and Behavior, and will be used by the American Epilepsy Society COVID-19 taskforce to design a plan to ensure proper epilepsy management in the event of a future pandemic or another flare up of COVID-19. Additionally, data from this study will be used to inform a supplement to my and my colleagues' existing R01, as we are now aware of ways in which self-management is altered during a pandemic and can thus add to our self-management platfor, myAURA, aspects that are relevant to self-managing during a pandemic.