Conversation with Dr. Luis Fernández-Luque, Adhera Health, Inc.

Improving Support for Latino and Hispanic Individuals Living with Chronic Condition-Related Fatigue and Their Caregivers

Meet Luis Fernández-Luque, Ph.D., M.Sc., principal investigator in minority health and health disparities research.

Dr. Luis Fernández-Luque is the chief scientific officer at Adhera Health, Inc., a health technology company in Santa Cruz, California, where he oversees the research roadmap for the company’s digital self-management platform for individuals with chronic diseases.

He is also principal investigator (PI) for the NIMHD-funded Small Business Innovation Research (SBIR) project, “Adaptation of a Digital Health Intervention for Chronic Condition-Related Fatigue to the Latino Population.” In this project, Dr. Fernández-Luque not only brings his perspective as a researcher in digital health but also as a Hispanic person and family caregiver for a loved one living with multiple sclerosis.

His career has always been focused at the intersection of computer science and health behavior change. He has ample experience in combining human factors research with artificial intelligence.This emphasis on human factors and data-driven applications dates back to his doctoral dissertation, which focused on the trustworthiness of digital patient education, and included extensive research examining the experinces of people living with diabetes in the U.S., Europe, and the Middle East.

A key element of Dr. Fernández-Luque’s research has been the use of participatory research methods to ensure patient involvement in the design of solutions capable of fostering patient empowerment across multiple chronic conditions. He co-founded and chaired the Participatory Health and Social Media Working Group within the International Medical Informatics Association (IMIA), IMIA’s vehicle for stakeholder engagement in participatory health informatics and social media.

Since 2009, and during his research visit to the GroupLens research lab at the University of Minnesota-Twin Cities, he has been exploring how to use data-driven approaches (e.g., recommender systems) to support personalized mobile-based interventions for health behavioral change.

Dr. Fernández-Luque received his bachelor’s and master’s degrees in computer engineering from the University of Sevilla in Spain and his Ph.D., also in computer engineering, from the University of Tromso in Norway.

Q&A with Dr. Luis Fernández-Luque

What is your research goal, purpose, and aim?
Our goal is to better support Latino and Hispanic individuals with chronic condition-related fatigue (CCrF) and their family caregivers. People with CCrF suffer from a debilitating and unrelenting sense of physical, emotional, and/or cognitive tiredness that negatively impacts their quality of life. Unfortunately, Latino and Hispanic individuals in the U.S. are disproportionately impacted by CCrF and its contributing factors, such as pain and stress, across various medical conditions, including multiple sclerosis, diabetes, and rheumatoid arthritis.

Digital tools can help patients better manage the symptoms of their conditions by prompting health-enhancing behaviors that lead to improved health outcomes and, ultimately, a better quality of life. However, some studies have found that fewer Latino and Hispanic people in the U.S. use these tools compared to other racial and ethnic groups. These tools aren't always made with the needs of minority communities in mind. Oftentimes, people from these communities aren't involved in the research and development of these tools.

Our Adhera Fatigue Digital Program, founded on our evidence-based Precision Digital Companion™ platform, is built under the principles of adaptative self-management. In short, this means we need to adapt to the physical, social, and mental well-being dimensions of the person. We cannot do that without considering the ethnic and racial background of users.

How is your work advancing the science and health of populations experiencing disparities? Are you seeing specific changes in particular communities or groups?
Until very recently, health disparities were not a core consideration when designing digital health solutions. Nowadays, there’s a growing interest in addressing health disparities at all levels.

At Adhera Health, we focus on applying responsible AI methods and principles to enhance the personalization of our solutions. We do this using a systematic and theory-driven approach, which is quite novel and important in our efforts to maximize the impact of our findings. We leverage the NIMHD Minority Health and Health Disparities Research Framework to advance the science of medical informatics—a path many will need to follow to see digital health tools better serve society.

From the research you are doing, what has surprised you about the discoveries from your work and its impact?
The more I work in this field, the more I realize the gap between the traditional health care mentality and the reality for people living with chronic conditions. During my Ph.D. program, clinicians emphasized the importance of “clinical validity” for any health education. Then, I interviewed a person living with diabetes from Rhode Island who explained that she was writing and sharing health education with patients through her blog, and one article focused on how to hide an insulin pump in a wedding dress.

At Adhera Health, we have seen how our mental well-being interventions for parents of children with chronic conditions have not only worked but they also improve their children’s adherence to treatment. When interviewing families, we realized a key factor contributing to “poor self-management” is mental well-being within the family.

More concretely, several of our recent studies have focused on emotional and self-management support for family caregivers. We have found that emotional distress among family caregivers plays a significant role in poor adherence of pediatric patients with growth disorders and type 1 diabetes. Too often, the needs of family caregivers go unnoticed. Even though they’re not the patient, caregivers play an important part in the patient’s health journey.

Based on this research, we developed our Adhera Caring Digital Program to enhance the physical and mental well-being of family caregivers to children with chronic conditions. In one recently published study, Adhera Caring successfully transitioned 70% of sub-optimal adherent families to optimal adherent status.

What inspired you to become a researcher in minority health and health disparities?
I noticed, after many years working in digital health across the world, that global health care systems have major shortcomings. I’m originally from one of the poorest regions of Spain, where I’ve seen families of loved ones with serious chronic conditions struggle to get the support they need due to a lack of access to health care and health literacy. When I moved to the U.S. while working on my Ph.D., I noticed similar patterns, and then again during my post-doctoral research in Sierra Leone.

The skyrocketing increase in health care expenditure puts the sustainability of health care at serious risk and doesn’t lead to better health for people living with chronic conditions. Some have argued that we need more innovation in this area, yet we’re continually introducing innovation and disparities persist.

Despite the boom in the adoption of digital health (e.g., personal health records, and mobile apps), these innovations are poorly adopted by traditionally underserved populations.

How do we encourage the next generation of scientists?
To be a scientist, you need to be curious, resilient, and willing to challenge the way things are done. With those qualities, you can transform your career in science, whether in industry or academia.

And, if you work as a scientist in the health domain, you will work on a universal human need. As a society, we must invest more in early-stage scientists (including those who launch careers in science later in life).

The social science and humanities fields also require greater investment as they play a critical role by helping ensure the ethical development of innovations.

What do you envision as the future of minority health and health disparities research?
I strongly believe that minority health and health disparities research will grow into the bridge that connects communities to health sciences, including medical informatics. Digital health companies that do not embrace equity by design will soon be out of the market because they deliver diminished returns to society.

Minority health and health disparities research can help ensure that all individuals, regardless of background, can attain optimal health and well-being. Some specific areas that will help realize this vision:

• Digital health – expands health care access for underserved populations. It can facilitate remote monitoring, deliver culturally tailored health education, and enhance communication between patients and providers.
• Artificial intelligence, machine learning, data science – analyzes large datasets to provide personalized interventions using responsible methods.
• Health technology access – ensures equitable access to health care technologies that address the social determinants of health

Page created Sept. 29, 2023