Policymakers as Human Subjects

You may find it useful or necessary to interview policymakers or otherwise involve them in your research. When you are thinking about policy or systems level change, this is a valuable strategy. However, you may run into ethical issues, issues with your IRB or both. Let's look at some of them.

First you need to decide, are you going to run this through an IRB at all. I know what you are thinking, policymakers are human too! True. But as we all know there is formal research that is preconceived, and informal research, which might be an as-needed conversation with someone in the know. What is at issue here? 1) Actually protecting the rights of the individual policymakers and 2) Your ability to publish this aspect of your work in a peer-reviewed journal.

The problem that I have run across is that the role of a policymaker in society is poorly understood by IRBs. In one case, I felt very strongly that complying with the IRBs guidelines for a promise of confidentiality would be either dishonest and therefore damaging, or make the research completely unusable. As we know it doesn't take many variables to be able to pinpoint individuals. Even in a city the size of New York, if you are working on a specific issue and the policymaker has a strong well-known opinion or role, they will be very likely identifiable if quoted or described in anyway.

In some cases the best approach is a journalistic one. Journalists use a type informed consent also (but they call it a release form), and yes, like researchers some are more ethical than others. But there is rarely, if ever, a promise of confidentiality. The cooperative approach I like for policymaker interviews is a release that gives the policymaker a few choices. For example:
1) You may print or broadcast any quotations from this interview without consenting me prior.
2) You may print or broadcast quotations from this interview with my pre-approval.
3) You may not print or broadcast any quotations from this interview, or refer to me in publication, but may use the information I am giving you to better understand the issues.

Each of these selections has risks and rewards which should be outlined in the consent form. For example, risks to career or community status, or rewards to career or community status. Some may question the impact of this process on the quality of the data. But having worked with policymakers at varying levels, I have found they tend to be gaurded no matter what the circumstances, except for the few who run to the other extreme. That is just anectodal, and perhaps inconsequential. The first step to getting quality data is, after all, having a useful and honest informed consent process.

As IRBs are evolving to better respond to protection of communities, and still struggle to really understand action research and sometimes even qualitative research, lets throw another log on the fire and challenge IRBs to understand the risks and rewards of policy research.

Rural Research

I spent some time driving around Oregon last month, meeting people who are working in rural settings. At the training in Bend, a city of close to 100,000, surrounded by miles of spectacular rural lands, one participant raised an issue that I, as an urban resident/researcher, had never considered. They wanted to know if a rural community should try to partner with scientists who specialize in each of the problems they are looking at, so create many partnerships, or if there might be researchers who are "generalists." The question came out of the overwhelming logistics of trying to attract multiple researchers and institutions, separated by a geographic divide, to work in one small community. While some urban communities are literally fending off researchers, it seems the demand far outstrips supply in some rural settings.

Community-based research is a good option in rural settings, perhaps because for some rural communities it is the only option. If they don't organize to do the research no one will. And to add insult to injury, many of the community strengths, health problems, and policy barriers to health in rural communities are unique, both to rural settings, and in many cases singular to that rural community. By contrast, in a data rich environment like New York City, you can understand a lot just by looking at existing research, and sometimes conducting secondary analysis.

The good news is that many researchers who practice community-driven research are generalists out of necessity. If the community guides the research, how can one know in advance what expertise will be needed. Some communities and researchers do partner around very specific issues from the outset; they coalesce around common interest. But others come together to improve health in a community - be it defined by geography or experience. In that partnership framework, the ability of partners to draw on existing research, and to contact outside experts for consultation, is usually sufficient to plan research and action locally.

I was traveling Oregon with the Northwest Health Foundation, and was very impressed with their efforts to reach rural populations and to fund community-based participatory research in a way that would result in truly community-driven projects. I have since done some looking into the issue of research in rural settings and have found only a defunct rural research network. If you know of research resources targeted to rural communities, please post a comment with the details.