Health research programs are coming to a fork in the road. Some are moving forward with participant-facing novel approaches to create better engagement and increase the robustness and quality of their datasets. The remaining programs are continuing with traditional paths that fail to incorporate participants’ needs with regard to data privacy, communication preferences, and concerns from socioeconomic and various ethnocultural perspectives.
The NIH has mandated that in order to be successful, innovative research programs must recruit, engage, and maintain the trust of a population that is representative of America’s ethnic, social, and economic diversity. To do this, study teams must communicate in different languages and styles, and through different devices and formats, all while ensuring maximum security for sensitive personal health information. Unsurprisingly, this requires a comprehensive strategy and communication infrastructure to support.
Meet People Where They Are, and Address Them as Individuals
Even within specific catchment areas, potential participants hold a wide range of attitudes toward healthcare as well as different levels of access to or comfort with technology. There are individuals who are highly connected, who wear sophisticated biometric devices and enjoy keeping track of their health information in real time. Alternatively, there are people who lack access to reliable internet service, who don’t have a mobile phone, who are not engaged with their own health or who don’t speak English. Some people have had radical changes to their lives as a result of the pandemic: changing jobs, moving addresses or being forced to alter insurance coverage. Every person’s preferences to receive and respond to different messages evolve over time. In the case of the All of Us Research Program, it must reach and engage its participants over the course of more than a decade.
To truly integrate such variations in patient perspectives, health research must look at the entire participant experience. To meet each individual where they are, starting with recruitment and extending through the full course of the study. Communication must be tailored to reflect these perspectives, from the content of the message to its style, tone and method of delivery. Sometimes a short quiz is better than a phone call, sometimes a text message is better than an email. Most importantly, the researchers must keep an open, two-way dialogue with participants, ensuring that they are equal partners in the success of the initiative. Personalized, sensitive, two-way communications set the right tone for a relationship of partnership, and this, in turn, leads to better participant engagement and higher quality data.
Accomplishing that at any kind of scale requires flexible and sophisticated communication infrastructure to automate personalized communications across channels and devices. It requires the ability to reach out in a one-to-one manner over a variety of different mediums all while taking preferences into account. It also requires ingestion and normalization of data from the diversity of disparate sources. At each step across this continuum, researchers must obtain requisite consent and capture accurate data while communicating in an accessible and personalized manner.
Such a technology framework, while familiar to marketers, is relatively new to many health research programs. Its development and subsequent deployment is essential to ensuring that programs like MyHealthy Maryland can consistently engage participants from all walks of life across the state.
Be Transparent and Demonstrate Value to Participants
Maximum participant engagement in health research is predicated upon the understanding that there is not a one-way street where participants hand over their information. Rather, it is a two-way exchange which is mutually beneficial for both parties. Gone are the days when participants can be viewed simply as subjects or sources of information. Any time a person is asked to part with their sensitive information, let alone their blood or saliva, they deserve a clear sense of what they get in return—and what they get in return must be of tangible value.
For instance, as active partners in the research, participants in the Mount Sinai Million Research Program are given access to their genomics results via a secure portal, and can schedule appointments with genomics counselors to help them better understand their results.
Health researchers’ commitment to transparency is vital to participant-centered research. Participants, as active collaborators, are given access to their own information, while also being given a clear sense of how it will be used and for what purpose. This transparency helps participants feel that they are equal stakeholders in the program’s success and their contributions are for a greater good beyond that of their own well-being. A great example of this is the SuperAgers Family Study, where the research team used ‘greater good’ recruitment messaging to encourage participation from centenarians.
Protect Participant Privacy at All Costs
No amount of personalized messaging or transparency would be meaningful if it were not backed by a rigorous commitment to ensuring the security and privacy of participants’ information. There can be no compromises on this point. As research programs integrate remote, electronic data collection methods, as they become more cloud-based, as they avail themselves of developments in wearables and mobile apps, researchers must adopt the most stringent standards for secure data governance, management and transfer.
Researchers need to not only adopt best-in-class ecoa, epro, and econsent technologies to meet the legal requirements but must go the extra mile to adhere to the real spirit and intent behind those regulations. There is no such thing as too much protection. Just as it depends on the availability of granular data on individuals, the very future of precision health hinges on the ability to keep information secure, and to inspire confidence in participants that every possible measure being taken is held in the strictest of confidences.
Integrate Lessons from Consumer Marketing While Retaining Healthcare Values
The values of personalized communication, transparent value exchange, and data privacy are not entirely new to health research programs. In some ways, they are an extension and intensification of the best practices hailed by leaders in data-driven consumer marketing. And surprisingly enough, some of the most sophisticated tools for reaching, engaging, retaining, and inspiring people toward action have been developed for use by large consumer brands.
Rather than think of participants as consumers, patients, or subjects, we must strive for research methods that treat them as partners, collaborators and most of all individual contributing human beings. They deserve to be spoken to in their own language, to be met where they are, to be understood as full human beings, and to have their information made available and kept secure. COVID has shown us that agile, adaptable, and intelligent participant communications are essential for the durability of health systems. These principles are not just essential for gathering the requisite data to advance precision health—they are endemic to the promise of precision health itself.
