Informed Consent: relationship builder or destroyer

Informed consent is a process. Fundamentally this process is designed to protect the subjects of research. This is a critical goal for the integrity of individual projects, and for the longevity of human subjects research generally. The process can also serve to create trusting relationships between researchers and subjects.

Participatory research engages community residents as researchers, and encourages researchers to become actors. It blurs the roles of individuals and expands the functions of those roles. In this context informed consent should reflect the values of the partnership between the community members and the researchers. And this is tricky. It is a tricky proposition in and of itself - to create language that informs without assuming ignorance, that provides consent without giving away agency, language that is both collaborative and protects the rights of individuals and communities.

Institutional Review Boards have a long history, individually and collectively. When they draw on that history in review of current proposals, the can sometimes create roadblocks to collaboration between communities and researchers. The language and processes required by IRBs can have the effect of disempowering the very individuals they are trying to protect. When researchers are forced to read aloud pro forma language to people with whom they have an existing relationship, it creates a barrier. It reminds the researcher and the participant of the institution and the history of that institution and others. Some would call this a cultural competency issue, and it is that, but the problem of informed consent in participatory research and research done in partnership with communities also illuminates some of the tensions between "I" and "We" in the United States.

Practically, the best way to overcome IRB roadblocks is to engage community members in preparing informed consents, and in communicating with the institutional review board. Community experience is best articulated by those who have experienced it. And it is much more difficult for an IRB to argue that a community is not being properly informed if the community members can explain what language would be best understood in their community. This is yet another one of the values of community-academic partnerships.

The value of secondary data analysis

This is the information age. More and more data being collected is also being made publicly available, particularly government collected data. Some geographies receive, for a variety of reasons (usually political and historical), more scrutiny than others. If you live or work in one of these communities and are thinking about research that will lead to change, utilizing existing data has a number of advantages.

Analysis of big data sets - the kind the government has the access and money to produce - can be a great starting point. It can give you some information about health outcomes, socio-economic indicators, sometimes even lifestyle. Then qualitative methods can be used to elicit the meaning of these facts to the community - the "hows" and "whys" that can lead to action strategies for change.

When you get to the action strategy phase, it is useful to have government data to back your claims, particularly when you are advocating for changes that must be enacted or implemented by the government. It is also illuminating to look at what data is being collected and how. Changing what the government collects for the record may be an important part of your advocacy campaign.

Analyzing available data, obviously takes less time than designing research methods, collecting data, and analyzing data. It is also much cheaper. In fact, most professional policy analysts do very little primary data collection, because of constraints of time and money.

For these reasons, secondary data analysis can be the just-in-time strategy that action-hungry communities are looking for.