Dr. Lesli Skolarus, MD, MS, is a professor of neurology and co-chief of the vascular neurology division at the University of Michigan. She is well-renowned for her work on community partnerships to improve stroke outcomes and stroke equity. She has used several innovative concepts in improving outreach and engaging and empowering underserved communities in stroke care, such as providing stroke education in Black churches, using wearable devices and mobile apps, decentralizing stroke care by improved focus on Federally Qualified Health Centers, and emphasizing the importance of preventive stroke care in the community. She is on several diversity committees, including that of the American Heart Association and American Neurological Association, and has received several prestigious awards, including the 2017 Derek Denny-Brown Young Neurological Scholar Award from the American Neurological Association.
She is interviewed by Dr. Saurav Das, MD, Assistant Professor, Department of Neurology, University of Kentucky College of Medicine.
Dr. Das: Dr. Skolarus, I want to thank you on behalf of the Blogging Stroke team for joining us for an interview for National Stroke Awareness Month. You have tremendous experience working to reduce stroke disparities using novel strategies like stroke education in Black churches, strengthening the role of Federally Qualified Health Centers in stroke care, extending advanced care planning to the Black community, etc. Can you outline for us a few of your favorite initiatives and insights you have gained regarding what strategies work and what do not?
Dr. Skolarus: I have learned the power of broad-based community partnerships. From our hospital and clinic operational partners to our community partners, everyone has something to add to our shared goals of promoting health equity. Every type of partner has been vested in the stroke care initiatives. By leveraging collaborators’ interests and strengths, we have been able to develop and test health behavior theory-based interventions that may make significant strides toward improving the lives of stroke survivors and reducing the risk of stroke. In addition, I have learned the importance of cultural humility, which is a process of lifelong learning and self-reflection, acknowledging one’s own biases, desire to fix power imbalances, and accountability. It is a commitment to respecting all viewpoints and engaging authentically from a place of learning. That being said, from the beginning, we have always approached our community partners as true and equal partners — experts to learn with, challenge us, and help us grow. You cannot expect to make a difference by coming in with hubris; our process has always been about building a relationship and trust and letting the community partners lead us in ways we can help improve the health of the community.
Dr. Das: I was reading about your work about community partnership and the myBPmyLife project. I particularly found it interesting to learn how community-generated messages often made a spiritual or logistic connect with other community members. Please tell us more about this project and how stroke programs in different places in the country can implement a community partnership.
Dr. Skolarus: myBPmyLife is a mobile health (mHealth) trial that aims to improve blood pressure control among hypertensive individuals. The core of myBPmyLife is the delivery of contextually tailored smartphone notifications that encourage a low sodium diet and physical activity. We believe that tech interventions to promote health equity must be designed in collaboration with the focus community, not for the community. Community members are experts of their community; this expertise is necessary. In accordance with this belief, we recruited individuals from Flint and Ann Arbor, the intervention’s focus communities, to review our research team’s notifications and create their own contextually tailored notifications.
Flint and Ann Arbor participants’ notifications had themes of grace and forgiveness, with many references to second chances and trying again tomorrow. Flint participants’ notifications also had a religious theme, encouraging participants to pray and read the Bible to help them make the recommended changes. Flint participants frequently referenced a “we” in making the changes in comparison to “you,” demonstrating community and social support. Their messages also advised on how to overcome unmet social determinants of health that could serve as barriers to physical activity or a low sodium diet, like taking the bus to a grocery store with more food options. Ann Arbor participants contextualized their notifications with office-based environments and a 9-5 work schedule. Compared to our team’s notifications, community members used more informal language. Community members’ messages encapsulate the expertise of their communities.
By bringing community members into the design process, we removed unrealistic suggestions and inaccessible language from the notifications that our team had written and incorporated language and culture relevant to the communities. We hope this makes the intervention more accessible to all participants and diminishes intervention-generated inequality. The notifications are highly specific to the intervention communities. However, anecdotally, community members were highly receptive to participating, and a similar process could be utilized in other settings.
Dr. Das: You have also worked in developing technological innovations to bring behavioral change, including mobile applications, wearable devices, etc. Can you outline some of your work in this regard and if any of these technologies are available for use by providers and patients elsewhere?
Dr. Skolarus: As I mentioned previously, myBPmyLife investigates how mHealth apps may be built on real-time contextual information to create tailored just-in-time-adaptive interventions (JITAIs), which deliver highly relevant and useful notifications to participants through the use of their smartphone and wearable devices. Reach Out is another mHealth trial focused on improving blood pressure through text messages-prompted blood pressure self-monitoring and feedback and addressing health-related social needs, such as transportation and establishing primary care among hypertensive safety-net Emergency Department patients. These studies show the wide extent to which technology innovations can be implemented based on the needs of the population you’re working with, from as simple as text messages to mHealth apps based on smartphones, Bluetooth, and wearable devices.
Many apps and technologies focused on health promotion are publicly available, but few have been tested, limiting dissemination by providers. The goal is that trials like ours will inform provider recommendations and enhance patients’ ability to self-manage aspects of their daily health. However, we’re finding that even with the best-designed technology, there may still need to be some level of personal interaction or a human component. Overall, technology interventions have shown promise (a great example is the Apple Heart Study: https://www.nejm.org/doi/full/10.1056/nejmoa1901183). However, some fundamental questions still need to be answered, such as dose (frequency of contact), duration (how long should patients receive the technology intervention before it becomes burdensome or counterproductive), how to avoid habituation, and identifying the critical health behavior goals (what are best strategies that assist patients in identifying behaviors to change, and then how to go about making that change).
Dr. Das: Current neurology curriculum emphasizes acute stroke treatment, determining stroke etiology, and secondary stroke prevention. I believe community stroke care is never discussed. Your work demonstrates how this space has a huge potential for innovation and entrepreneurship. Do you have any thoughts about how community-level stroke care can be included in neurology training?
Dr. Skolarus: Including community stroke care into neurology training is essential. Many opportunities are available, such as partnering with Federally Qualified Health Centers, which care for a large population that could benefit from neurology care but has limited access to specialists. Senior centers are another great location in the community for medical professionals to visit, understand the needs of older adults, and deliver programs based on these needs. We also need to look beyond the medical realm and do more to address the health-related social needs of our stroke survivors. For example, stroke survivors may encounter barriers to obtaining adequate nutrition, transportation, or accessible exercise areas. By supporting community efforts and connecting stroke survivors to community resources, neurologists can improve stroke survivorship. Including assessment of health-related social needs and the strategies to address them should be included in the resident training curriculum to help providers look beyond the clinic and hospital space.
Dr. Das: Dr. Skolarus, how might you suggest any readers interested in community-level stroke care-related projects get started? Are there any resources, grant opportunities, collaboration opportunities, etc., especially useful for beginners?
Dr. Skolarus: The number one suggestion I can give people is to develop partnerships in the community, fields, and spaces they hope to work. Community partnerships are the single most impactful tool you can start with, meaning find groups or individuals that share your values and goals or ask some of the questions you are hoping to ask. It takes time to develop trusting community relationships and build equitable partnerships.
There are wonderful organizations like the Detroit Urban Research Center (URC), which provide a practical, online course to learn about community-based participatory research (CBPR) from experts in the field (https://www.detroiturc.org/about-cbpr/online-cbpr-course#:~:text=This%20online%20course%20from%20the,for%20the%20free%20online%20course). Similarly, the University of North Carolina has a graduate certificate in participatory research (https://participatoryresearch.unc.edu/). The NIH, National Center for Advancing Translational Sciences (NCATS), supports the Clinical and Translational Science Awards (CTSA) program, which has a community engagement core to support this work (https://ncats.nih.gov/ctsa/about). Finally, consider the benefit of interdisciplinary partnerships with faculty or groups at your university’s School of Public Health.