When Robert Petrella obtained an international grant to study how doctors could reduce the risk of cardiovascular complications associated with diabetes by prescribing physical exercise, he wanted to make sure his results would reach the community that stood to benefit from them. His strategy was to give the community a larger role than usual. Petrella needed patients to act as research subjects so that he could test the effectiveness and applicability of exercise therapies. But he also needed advice on how to make his proposed intervention easier to implement and sustain. So Petrella, a physician who studies aging at University of Western Ontario and the Lawson Health Research Institute, both in London, Canada, invited patients, doctors, and health care organizations to provide insight throughout the study.
Engaging that community, Petrella found, made it much easier to recruit and retain research subjects. Conversations with patients and other stakeholders helped him refine his trial protocol and design a more sustainable exercise intervention, and led to new ideas about what to study next.
And it brought out the best in the researchers. The community's interest “made us feel much more empowered to do better,” Petrella says. "It’s helped us as researchers.”
From research subjects to research partners
Working with Patient Advocacy Groups
In a companion article, Science Careers staff writer Michael Price considers strategies and tactics for working with a particular kind of community stakeholder, patient advocacy groups.
Involving communities as partners in health care research is “not that common,” Petrella says. But he thinks its importance is growing. Polar research is another area where communities are playing an increasingly important role. Often “the observations that are needed to understand the change in the environment [must] take place throughout the year and over a long period of time, and many of these observations are best conducted by people in the community who know the place well,” says David Hik, president of the International Arctic Science Committee and an ecosystem and climate change researcher at the University of Alberta in Edmonton, Canada.
But in environmental science as in medical research, the advantages go beyond data collection. Local citizens can also help interpret data -- as the Inuit did during an International Polar Year project that used satellite pictures of sea ice. The locals helped "by interpreting at a much finer scale what was actually in those images in real time," Hik says.
Communities can also help scientists better understand the issues underlying their research. Talking to locals “helps them to focus their questions, refine their questions, and understand more easily what types of information would be most important to collect,” Hik says. In health care, asking the community for advice helped Petrella improve his exercise intervention, the main product of his research.
Researchers at the University of Gothenburg’s Centre for Consumer Science in Sweden have been working with schoolchildren as co-researchers, studying the food offerings and health messages that children find in their environment with a view toward promoting healthy eating habits. "Children have another perspective [as a result of] where they are in life," says Sandra Hillén, an ethnology student at the University of Gothenburg who started a Ph.D. in the field. “The research should be about food, but within that framework the children are free to make their own research questions.”
During the course of the study, Hillén took an interest in the schoolchildren themselves and how they work as co-investigators. As the children study their own environment, they serve as both agent and object, blurring the boundaries between research partner and research subject.
Sometimes community members even initiate a research project, as people in the Old Crow Flats in northern Canada recently did. “The community was very interested in what was happening to the wetlands and to the caribou" and in other changes occurring in their traditional territory, Hik says. So, in 2006, the community initiated a partnership with scientists. The locals conveyed their concerns about climate change to the researchers, who put together a grant proposal, which was funded. Over 5 subsequent years, scientists and locals carried out several seasons of field research and conducted many workshops and outreach activities.
Just another collaboration
Collaborating with the community isn't all that different than collaborating with a group of scientists. Key factors include ensuring that the work gets done well, that communication is clear, and that mutual expectations are managed.
As in any collaborative research effort, clear, deliberate communication is necessary to establish a strong foundation for the relationship so that trust and cooperation can grow over time. It helps when scientists explain early on what research they plan to do and the various ways the community can be involved, Hik says.
But communication is just one aspect of managing expectations; often the community and researchers simply have vastly different needs. "Sometimes, there can be a real mismatch between what you want to do as a researcher and what the community is interested in,” Hik says. Such situations can be difficult to manage, since a researcher can't completely revise his or her research agenda to accommodate the needs of the community. One option in such situations is to bring in scientists whose research interests are closer to the community’s priorities, Hik says. But you must also be prepared to abandon the project if agreement can't be found, he adds.
Researchers also need to be aware of potential conflicts of interest within the communities. “Everyone around the table needs to declare what their interests are,” Hik says. It is fine for participating groups to have special interests, Petrella says, as long as the researchers are in the driver's seat.
Differences of perspective can lead to differences of interpretation within the community -- or between researchers and the community -- so it's especially important to share data. Make sure all participants have timely and open access to data and that the processes for collecting and sharing information are transparent, Hik says. “You don’t have to all agree on the interpretation, but at least you’re using shared and common information.”
Ensuring access to data and other research products doesn't mean merely posting data online. The inputs and outputs of your research need to be accessible to people who don't have advanced scientific training and applicable to the needs of the community. “It’s important to realize that you can’t just send a photocopy of your research paper or your thesis. It’s a different document with a different audience and probably with different content,” Hik says.
Another potential benefit -- when it is justified -- is co-authorship on scientific articles. Co-authorship should be discussed upfront, Hik says. Other considerations, such as confidentiality issues surrounding patients or children, also need to be considered.
Time and money
Researchers interested in partnering with communities should be aware of the extra investment it often requires. “I think the benefits outweigh the challenges, but it does take more time,” Hik says. More time needs to be spent planning the project, getting consent forms and ethics approvals, meeting with the community, and offering training. If your community is schoolchildren, you may have to “go and spend a week and build something into the science curriculum,” Hik says. With other participants, you may have to arrange “for trainers to go to the community or for community members to come to workshops or training sessions.”
One issue that young group leaders in particular need to be aware of is money. “It’s not just more funding for the researchers to travel into the communities, but you also need to find resources for community members to come to the researchers sometimes, to come to conferences,” Hik says. “One of the biggest challenges is finding a way to make sure that you can support those aspects of a project.”
Researchers taking part in community collaborations often wish to reward communities for their time and contributions with more than just acknowledgements or co-authorship. Petrella says that he and his co-workers are being asked more often, not just by funders but also by stakeholders, "How are you going to implement and sustain what you found into the community so that they will ... benefit?”
One way Hillén has found to give back to the children in her food study is to offer them opportunities to give talks to other children at school, their parents and teachers, and her research colleagues. “I think some of the children find the phase where they present their research very rewarding and in some sense empowering,” Hillén says. “But you always feel that you could have done more to give something back to the children for their efforts.”
Communities often expect something more tangible than data from the project, but it isn't always easy to give them more. “Once you leave and the research has moved in a different direction, how do you sustain and keep that research present?” Those are important questions to consider, says Petrella, who is now helping the community that took part in his study adopt long-term lifestyle changes through consultation.
By all means, try and stay in touch. “Even if it’s a very focused or time-limited project, … [it's important] after you finish to not just disappear,” Hik adds.
A rewarding experience
Scientists who want to work with communities need to develop strong teamwork and communication skills, be willing to invest time in cultivating relationships, and be flexible. For those willing to invest in community projects, there is much satisfaction to be gained.
Hillén feels that she contributes to giving children a voice and empowers them to find information that they can use for their own well-being. Petrella found when researching the benefits of exercising that “the community was extremely interested in being a part of it,” he says. “That made us as researchers feel even better that we were not only having research impact but we could have real community impact.”
Elisabeth Pain is contributing editor for Europe.