what can this be looks like? What can someone change today, now, without having to prepare to fight a lawyer over contract wording? Start with artefacts – physical items that patients bring home (or digital items that are emailed to them). A typical consent procedure might result in two: a copy of the consent form itself, a contact person often with questions, and (possibly) a short brochure about the study. For patients, it feels like a dead end with no real path to deep engagement.
Instead, the consent form can serve as an invitation: a cover sheet describing community committees, meetings and events, and how patients can get involved. This doesn’t have to be a metaphorical invitation: QR codes, links, and text calendar invitations can make joining a community a one-step process.
In addition to the quizzes that are popular in research today, we can push the interactivity of consent forms. Quizzes fit nicely into the transactional framework: we want patients to read the form, think about what they read (but not too long), and then complete the quiz.
But the relational framework suggests that more work needs to be done. It is unclear whether taking the quiz actually shows that the patient understands the content of the consent form, especially the terms embedded in the form: privacy, de-identification, etc. This may not seem like a big deal, but without a common understanding of the terminology, patients and researchers may have different expectations about how data is handled and protected. Perhaps most importantly, the community needs to make room for patients to understand data concepts so that patients can meaningfully participate in the governance of the community.
Not only can short-term retention be demonstrated, but interactive consent forms can be set up to stimulate long-term patient learning. Maybe a consent form comes with a field guide on data privacy, or an example of past decisions that the community has made about data. Or, it might enable patients to practice making their own decisions about data, or predict how a community would respond to a hypothetical governance scenario.
What if the patient wants to reduce participation or leave altogether? Whether you are leaving your job, service, or community, quitting is an important accountability tool and a way to protect yourself from further harm. But in the age of big data, true withdrawal can be difficult, and even patients or communities who refuse to participate in research can be at risk because of their outputs — such as biased algorithms for diagnosis and treatment. This upends the basic deal of consent: study participants accept additional risk in exchange for their participation.
As the lines between community building and research initiatives blur, as peer support groups move online or are built into research platforms, the consent process also needs to consider those who do not contribute data but still participate in the community, whether through support Groups, community counseling, or even just as a family member of the patient concerned. This could mean better bridges to communities and patient groups that are impacted by, but independent of, research projects. Data sets are not silos; neither should the data community.
Of course, there are There is more work to be done. Institutions are still considering historical racism, research development and misuse of trust. Distrust in health care can spill over into distrust in research. Fixing this requires work, not words. Building trustworthy research relationships requires more than better consent procedures: it requires ongoing commitment from researchers and their institutions.
Nonetheless, a more deliberate approach to consent could help change the research framework, from happen Something that patients have in common. It can also bring dividends to the community. Participating communities can run into plumbing issues and struggle to replace participating patients, board members, or advisors when they inevitably move on. Investing in engagement and capacity building can create more people who may ultimately be willing to take on more engaged roles.
Consent forms don’t have to look like the dozens of legal forms and disclaimers we ignore every day. It shouldn’t. Redefining consent can help build bridges between patients and researchers and facilitate the long-term relationships necessary to advance better health outcomes for everyone.