For researchers conducting longitudinal genomics research, research participant attrition is not just inconvenient — it can result in attrition bias that undermines the validity of your results.
Attrition bias can occur in both observational longitudinal studies and experimental ones. In the case of the former, attrition bias occurs when so many participants drop out that the final study population is so different than the original group that the findings are no longer generalizable to the original population.
In the case of an experimental longitudinal study, attrition rates may differ significantly between the control and experimental groups. When this kind of attrition bias occurs, researchers may miss correlations or draw incorrect ones.
From our conversations with genomics researchers, we know that the risk of attrition bias may be high in longitudinal studies that aim to combine genomics with phenotypic data because many researchers either lose participants or have difficulty obtaining data from participants over time.
But there are strategies genomics researchers — as well as researchers in other fields — can employ to sustain participant enthusiasm over the long haul of longitudinal studies and thereby reduce the risk of attrition bias.
As you’ll see from these strategies, effective communication and providing value to your participants are essential to success.
View Participants as Partners and Plan Accordingly
As you begin to plan your longitudinal study, you can create a foundation for effective engagement by starting to think of your study’s future participants less as research subjects and more as research partners.
While this shift in thinking may feel strange at first, it will guide you as you make your plans for engaging these critical partners. Unlike mere research subjects, research partners are individuals you must build trust with — and part of building that trust is communicating frequently. Moreover, research partners must benefit as much from the research as the researchers themselves.
Thus, if you view your participants as partners, you will recognize that your research plans should involve extensive details on how and when to engage these partners and what kind of benefits to provide to them.
For example, you might plan to communicate with these partners each month. You might also plan to provide them with the following types of benefits:
- Ancestry information from their genomic sequencing
- Insights comparing their survey responses to others in their cohort
- Monetary incentives for taking additional actions
One model for the type of results to return to research participants is what the All of Us Research Program is doing.
Whatever choices you make, be sure to craft a detailed plan for how you’ll engage and provide value to your partners.
This advice on providing value to participants is consistent with Recommendation 6 in the 2018 National Academies of Sciences, Engineering, and Medicine Report Returning Individual Research Results to Participants. In that recommendation, the report authors write, “The investigator’s plan should describe whether individual research results will be offered to participants and, if so, when and how.”
Prioritize eConsent and Include Right to Re-contact
The initial consent process presents an opportunity to set expectations and gain long-term buy-in from your research partners/participants. It is also a first step in building the trust mentioned previously.
But you’ll want to do better than the conventional consent process, which involves a participant reading a consent document one time and setting it aside. Or perhaps a research team member orally presents the consent information one time to the participant.
Either way, the information is unlikely to be fully understood or retained.
In contrast, effective eConsent involves providing consent information in multiple media formats, including video. With a well-designed eConsent system, participants also retain access to review the media as often as they would like.
In addition, the consent information is broken up into digestible chunks so that participants can process the information at their own pace. This kind of participant-centric approach to consent improves participants’ comprehension and retention and earns their trust.
That goodwill, in turn, will motivate participants to stay engaged.
It’s also critical that you include in that eConsent process the right to re-contact participants so that you can continually reach out to participants and engage them.
The right to re-contact also enables you to re-consent your participants as your study evolves or expands. Re-consent further builds goodwill.
Just think — as you or your collaborators uncover opportunities for new ancillary studies, which practice is more likely to be fruitful: simply assuming participants are open to data collection on the new study, or taking the time to inform them about the new study’s aims and obtain their enthusiastic buy-in through a detailed re-consent process?
Provide Value to Your Genomics Research Participants As Often As Possible
Just as you wouldn’t enjoy being in a relationship in which you give and give and yet receive little to nothing in return, nor do your research participants.
To build a healthy, long-term relationship with your participants, you need to give them value early and often. As you conduct your longitudinal genomics study and gather genomic data, you can share curated data with your participants, including information that sheds light on their ancestry.
You might also consider sharing data that is relevant to participants’ risk for disease or findings that can be used for pharmacogenomics.
However, providing actionable genetic information might require your team to involve a healthcare professional, such as a genetic counselor or the participant’s personal physician, so that the participant can fully understand and appropriately act on the data.
Further complicating the return of actionable medical information is that the policies governing such return are still under development. As this National Human Genome Research Institute page explains, one challenge in genomics research is determining what is an actionable finding. A finding that is considered inactionable information today may become actionable in the future as new discoveries are made.
In general, return of incidental, actionable findings is controversial with no clear consensus among researchers and bioethicists.
Instead of returning actionable information to provide value to your research participants, you could provide monetary incentives for continued participation in the study. Researchers have shown this approach to be effective in longitudinal studies.
Of course, you’ll likely have to weigh the ethics of such an approach. If you’re offering money for continued completion of surveys collecting phenotypic information, that would involve different ethical considerations than a study that may expose participants to a risky procedure or drug.
Another way to provide value to your research participants is to gamify elements of the study, rewarding participants with on-screen confetti displays or badges for completing parts of the study. While these gamification elements may seem like low-value offerings, they in fact make participation rewarding and motivate continued action.
In general, your research plan should include details on how and when you will provide value to participants to maximize their return and engagement.
Broaden Your Approach to Communication
Another way to earn goodwill and encourage participation in your longitudinal genomics research is to stop thinking about communication as just sending out updates. Make communication a key part of trust-building by:
- Focusing on educating, not just updating
- Enabling individuals to select their preferred modes of communication
- Providing clear ways for participants to engage with your research staff
Focusing on educating, rather than just updating, means that you’re delivering information with the intent to improve understanding. As an example, when you’re simply updating someone, you share just the details about what’s new or what’s changed. Instead, when you take an approach focused on educating individuals, you remind your research participants why the data is important and why you’re relying on certain data-gathering tools, whether wearables, surveys, clinical care, or some other approach.
You should also provide individuals with a way to select how they want you to communicate with them. Then honor that — and contact the participants in their preferred way, whether by phone, email, text, or in person (or through all means if that is what the participant chooses as a preference). Give each person the ability to select and change their communication preferences on demand.
Possibly most important, give participants the ability to reach out to you with questions, comments, and concerns. As we covered in a recent blog, you build a relationship with research participants by being available.
Just as a two-way exchange of value strengthens a relationship, so does two-way communication.
How to Implement Engagement Strategies for Genomics Research Participants
While these strategies may be new to you or seem daunting, the good news is that technology makes them easier to achieve.
Vibrent Health’s Digital Health Research Platform (DHRP) enables the kind of eConsent described earlier, as well as return of value to research participants, and two-way, tailored communication.
The National Institutes of Health’s All of Us Research Program and Maryland’s similar My Healthy Maryland Precision Health Initiative are just two genomics research studies that are using Vibrent’s platform to carry out these exact same engagement strategies.
If you would like to learn more about how you can collaborate with Vibrent Health to power engagement for your longitudinal studies, including genomics-focused studies, you can start by requesting a pilot of our technology.
