Health equity describes a situation in which our healthcare systems help all people — regardless of background, identity, or circumstances — achieve the highest level of health possible.
Disparate people, communities, regions and countries have disparate health outcomes, and the reasons for this disparity are numerous.
Healthcare professionals have increasingly embraced the mission to close those gaps by identifying what factors lead to inequitable health outcomes then developing strategies and practices to overcome them. That’s a big, ambitious, long-term project, and clinical research sits right in the middle of all that work.
Here is how clinical site selection fits into the larger effort of driving health equity.
What Are the Current Challenges to Achieving Health Equity?
First, a little theory is necessary.
Researchers and healthcare professionals understand that numerous overlapping macro factors shape a given patient’s health. This can include everything from the country that person was born in, what systemic biases that person must navigate, what environmental factors are present in that person’s life, and what kind of healthcare expectation that person grew up with.
Work at the government and transnational level is necessary to level the global playing field, but so is work at the community level. In 2017, the National Academies of Sciences, Engineering, and Medicine published a report called “Communities in Action: Pathways to Health Equity” that argues for community-level thinking in achieving health equity:
“Not only is each community unique in the degree and nature of its health inequities, but so too are the means to address those issues, in terms of such resources as locus of power and community values. What communities share, however, is that they are each experts on their local needs and assets and thus need to drive community-based solutions.”
It’s the community that defines people’s shared vision for healthy living, creates the conditions for collaboration, shapes the capacity to get work done, and produces the leaders and support networks needed to affect change, the book argues.
For clinical researchers, then, it’s important to tap into communities to achieve desired healthcare outcomes.
If you want to learn more, have a look at the paper “Towards health equity: a framework for the application of proportionate universalism” by researchers Gemma Carey, Brad Crammond, and Evelyne De Leeuw. That paper outlines their model of subsidiarity, and how governance at different levels can promote healthcare outcomes at different levels of scale, from a general universalist perspective (e.g. ensuring everyone in your country has access to clean drinking water) to a particularist perspective (e.g. ensuring public and private networks at the community level can tailor their services to the specific cultural, ethnic, or other needs of the community).
Where Does Site Selection Fit In?
Choosing a site for conducting clinical research means making community-level decisions.
Of course, it’s not always thought of in those terms. Researchers might choose a site in, say, North Carolina’s Research Triangle because of its proximity to funding sources or vendors.
But adding an ethical dimension to site selection makes practical sense, as well, and it can nudge the work toward equitable healthcare outcomes forward.
The National Institute on Minority Health and Health Disparities has a nice example to illustrate this:
“Asthma disparities are intricately linked with the environment. Living in a city may increase exposure to air pollution and risk for developing asthma. Exposure to tobacco smoke, chronic social stress, or unhealthy diets may also influence asthma risk or severity. Thus, it is vital for clinicians and researchers to consider where patients live, what they eat, and how they feel—as well as characteristics like race, ethnicity, socioeconomic status, and age—to get a more thorough understanding of their patients’ experience with asthma symptoms and identify the best preventative strategies or treatment options.”
Even better, when researchers can involve the community in this decision-making, or at least make that decision-making transparent, it helps the wider medical community push for health equity, researchers Jennifer Miller and Joseph Millum write in BMJ Global Health.
“[Research ethics committees], contract research organisations (CROs), and medical journals should consider the ethical principles of social value and fair inclusion when reviewing and accepting study protocols,” Miller and Millum write.
“Specifically, they should require transparent reporting of trial site locations, on the country level, descriptions of the representativeness of country site selections to the global burden of the condition being studied, and explanations when high-burden countries are excluded from a study, consistent with recent efforts by major journals.”
How to Select Research Sites With Health Equity in Mind
An ethical approach to site selection means understanding the community in which your research will take place.
There are demographic dimensions to this understanding — the ethnicities of the people in that community, their socioeconomic conditions, etc. — as well as structural dimensions. It’s a good idea to learn what you can about local healthcare providers and the ecosystems in which they operate.
For example, the Centers for Medicine and Medicaid Services has an Accountable Health Communities Model in which more than two dozen healthcare organizations participate, Dr. Jay Bhatt, Dr. Jessica Nadler, Adam Hewson, Christine Chang, and Hemnabh Varia write for Deloitte. These organizations collaborate “by screening beneficiaries to identify unmet health-related social needs, referring them to community services, assisting with access to services, and aligning partners to help ensure that services are available and responsive to the needs of the community.”
Or, consider what the Phoenix Children’s Care Network is doing to screen all children for social determinants of health throughout the city. When children are identified as at-risk, their families get connected to an Integrated Care Coordination team to help those families navigate the resources and the support they need.
It’s crucial to understand what kind of community-level networks exist, what those networks’ goals are, and how clinical research can support or work alongside those efforts.
From there, the research teams can begin to get strategic about selecting sites that are in line with the trial’s demographic goals, for example. They can also look for further opportunities to make the trial inclusive and equitable, Stacey Versavel et al. write in Contemporary Clinical Trials:
“Launching and continuing engagement with advocacy groups when selecting site locations and vendors (e.g. clinical trial recruitment vendors) prospectively assists with planning for incorporation of DEI efforts. When opportunities to use a new supplier or vendor arise, the sponsoring organization’s procurement team can be engaged to assist with sourcing underrepresented businesses for review.”
Resources for Site Selection
Several public organizations have tools available to assist making site selection decisions in line with health equity goals:
- The National Cancer Institute has created a Clinical Trial Assessment of Infrastructure Matrix. That self-analysis tool defines “exemplary” clinical trials, and a part of that definition of exemplary is whether the trial is representative and inclusive of the community in which the research takes place.
- The Society for Clinical Research Sites has a Diversity Site Assessment Tool to help researchers self-assess their “capacity for recruiting and meeting the needs of diverse patient populations.”
Additionally, Anju Software’s TA Scan software facilitates strategic site selection by parsing community-level data to help researchers quickly identify sites with the right capacity for their clinical trials.
To learn more about how TA Scan can support ethical, strategic site selection, request a demo today.
Images used under license from Shutterstock.com.