As Winston Churchill said, “Never waste a good crisis.” My team and I have taken advantage of pandemic-induced isolation for intensive introspection on the current and future state of health research. We imagined the ideal post-pandemic health research scenario, where researchers have radically accelerated the pace of their research, discoveries and publications. Then, we brainstormed about what would need to happen in our universe to create this ideal research environment. We identified three key factors that could lead to these breakthroughs:
- Research study teams are able to do more with less
- High diversity in recruitment and long-term retention is a reality
- Research teams are able to collect more holistic data participants, including their environmental context
Let’s dig into what each of these would entail to bring about this brighter future for the research community, and why each of these matters.
1. More efficient research: empowering study teams to do more with less through purpose-built tools and workflow automation
As a health researcher, your study team is the engine that makes your research run. As you already know, research teams are ultimately constrained only by a combination of the limitations of the tools they utilize and by the amount of time they can dedicate to each study. This has been especially true in the era of COVID research. It’s primarily the product of the two of these limiting factors that yields the productivity of the research study.
We’ve worked with study teams across the country for years to understand their workflows, pain points, unmet needs and dreams for the future. What we consistently hear from almost every team is the need to do more with less. Tools must consistently work as expected. Manual workflows need to be automated. Operational data needs to be readily digestible and actionable via live dashboards. Communication campaigns for pre-enrollment recruitment or post-enrollment retention and engagement must be tailored and calibrated for different populations (sometimes down to small segments of the cohort).
To make these tools and capabilities manageable and easy to use, they should be available via a single online tool that offers a consistent, high-quality user experience. That’s because, in technology, points of friction will accrete over time and contribute to inefficiencies, burnout and staff turnover. Simply put, if you want to accelerate health research at scale, start by making study teams happy.
Here’s a good overview of the challenges that study teams face with recruitment, retention and engagement. In a study about digital tools for participant recruitment and retention, Frampton et al conclude that, “our systematic map highlights a number of knowledge gaps where further research would be helpful. These include a lack of research on retention, and a lack of research on certain populations such as children and older people, and on process outcomes (i.e., facilitators and barriers), including the attitudes and satisfaction of the digital users.”
2. A more accurate view of America: increasing diversity in health research using digital technologies
Regardless of which piece of the puzzle you belong to – government, academia, non-profit or industry – we all have our part to play in helping to achieve more balanced representation in research studies and clinical trials. As a member of the health research industry community, Vibrent has made a solemn commitment to do our part. We understand that diversity is good ethics, good science and good workplace culture.
That’s why we have made sustained investments in our technologies and processes to help accelerate inclusion of underrepresented populations in clinical research. Diversity in clinical research participation ensures the equitable return of value and benefits to groups who have, for too long, been excluded from a seat at the table. Vibrent is dedicated to harnessing technology and bridging the digital divide to contribute to a better, healthier future for all.
3. Whole person data collection: remotely collecting longitudinal datasets about an individual’s biology, mental health, lifestyle, choices, clinical and environment
If researchers achieve optimized study staff efficiency and balanced diversity representation, true acceleration of novel discoveries and therapeutics will still prove to be elusive without a third critical component—the ability to collect, harmonize and export data about the entire holistic human and their environmental context.
Health researchers should be able to select from a standard package of data collection mechanisms that generate data about the whole person:
- The person’s biology (genomics, omics, pharmacogenomics, microbiome)
- Person-generated health data (PGHD), digital phenotyping and behavioral sensing/personal sensing about their physical health and mental health
- Clinical data (electronic health records, claims)
- The individual’s environmental context (ZIP code, air, water, economic, social, workplace, and healthcare access which contribute to social determinants of health)
It is through the union of these broad data sources that researchers can begin to understand patterns of disease in individuals, communities and populations. While each of the four mechanisms is important, individually they are not sufficient to tell the whole story. Technology has a significant role to play in achieving this vision.
Remote sample collection kits, mobile apps, EHRs, surveys, ecological momentary assessments, passive sensing, connected medical devices, wearables, social networking and connected apps all have a role to play in this holistic data collection vision. To be complete, the field of health research must successfully integrate these data sources and capabilities for the complete picture.
All three components— efficient and happy study teams, diversity, and holistic data collection —are necessary for truly accelerating clinical research.
This is what our team realized while taking a breather from the COVID madness and re-focusing on the long game. By working backward from the place we want to be when the COVID crisis is behind us, we realized our plan to meet the needs of clinical research through technology, which plays a critical role in achieving true innovation at scale in all three of these key success factors – efficient and happy study teams, diversity and holistic data collection about the individual and their environment.
If you’re interested in learning more about the three factors to accelerating health research, here are a few notable articles on those topics:
- FDA guidance on diversity in clinical trials: Enhancing the Diversity of Clinical Trial Populations — Eligibility Criteria, Enrollment Practices, and Trial Designs Guidance for Industry.
- The original call to arms by Dr. Francis Collins on the need for a landmark cohort study that examines the relationships between genes and environment: A New Initiative on Precision Medicine
- Studying the relationship between genes and ZIP code: Researchers tap massive database to determine the effects of genes and environment in 560 common conditions
- New study on gene/environment interactions: New study could help to better predict which individuals are more susceptible to cancer-causing agents in the environment
I would be happy to talk about how virtual digital health research technologies might help to accelerate your research and funding roadmap. Email me at dklein@vibrenthealth.com
