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Past Opportunities to Provide Input
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Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
- 10: Standards for Studies of Diagnostic Tests
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- Past Opportunities to Provide Input
The Eugene Washington PCORI Engagement Awards are designed to help build a national community of patients, caregivers, clinicians, researchers, and other healthcare stakeholders who will advance patient-centered comparative clinical effectiveness research. The goal is to increase the usefulness of the evidence produced by PCORI-funded studies, while supporting the efforts of patients and others eager to see more research focused on their healthcare questions.
Some communities can become involved in research fairly easily. For others, it’s far more challenging because of a variety of factors, such as education level, geography, the nature of a particular illness, age, gender, or race. As a result, researchers have to seek ways to more effectively engage these populations in research that can help to address their particular healthcare concerns.
Three Engagement Award projects highlighted below have used a variety of strategies to address the unique challenges in engaging some of these populations, such as people who live in rural areas or those with low levels of education. Strategies for overcoming these challenges include using teleconferencing and videoconferencing, building trust through relationships with community groups, accommodating cultural needs, and adapting materials to meet literacy needs. We hope the lessons these projects learned can help others address their own challenges in engaging a variety of hard-to-reach populations.
Four Steps to Engaging Underrepresented Populations
Project teams that engage with diverse populations provide the following advice based on their experiences.
- Listen and learn. At first, don’t ask anything of the population you hope to engage. Listen to their stories. Learn how to communicate in a way that everybody understands. Reassess and reflect on strategies and activities that may not be working.
- Build trust. Make sure you establish trusting relationships with communities. There are no shortcuts—trust takes time to build. “Explain very clearly, openly, and accessibly, exactly what you’re doing, what the research is for, and how it might benefit the group,” says Rebecca Johnson, MS, PhD, of Northwestern University. “Be clear if it won’t benefit them.”
- Develop partnerships. Partnerships can be a gateway to reaching vulnerable populations. Going into a community you are unfamiliar with, you may not know which community organizations have residents’ trust. Get to know the local church and school systems. Talk to the staff there about where people in the community go for help or health care. That step can help identify community partners and build familiarity with a community’s needs.
- View the population as experts. Let the community you’re working with know that you recognize they are the experts. Acknowledge the value of lived experiences. Avoid making assumptions. Ask people to help you better understand their population and their priorities.
When Populations Are Spread Out
In a literal sense, rural populations can be hard for researchers to reach and engage effectively. Patrick Kitzman, PhD, MSPT, and his team at the University of Kentucky Research Foundation dealt with this issue in their Engagement Award to work with people who live in rural areas and have neurological conditions, such as stroke survivors or those who have brain or spinal cord injuries, along with their caregivers. The project team recruited primarily from Appalachia, including remote areas of Kentucky.
“The biggest challenge is figuring out how to get the word out,” says Kitzman. He said his team had to go beyond traditional methods of engaging with people he wanted to reach, such as newspaper and radio advertising. Instead, the team took advantage of relationships with trusted community organizations that advocated for the people living with these conditions. “People who are interested in learning more about our program would always go to one of these other groups, like the Kentucky Appalachian Rural Rehabilitation Network, to first validate that our project was relevant, and then they were much more willing to talk to us,” he says.
The team also used a video- and teleconferencing tool to arrange remote meetings with people from across Kentucky whom the researchers sought to involve in their work. People without computers gathered at one site to call into meetings, sometimes becoming a supportive participant resource in the process.
One Group, Many Challenges
Migrant and seasonal farmworkers not only move around a great deal but also tend to have low literacy skills, which can create a lot of difficulty in engaging them in research that could benefit them. Cheryl Holmes, MPA, of the University of Kansas Center for Research, and Suzanne Gladney, JD, of the Migrant Farmworkers Assistance Fund, are trying to address this by working with migrant and seasonal farmworkers to develop a research agenda on the farmworkers’ health priorities. Many of the people they work with are Spanish-speaking immigrants in rural Missouri. Holmes and Gladney note the importance and challenges of logistics in engaging this population.
For instance, the two wanted to bring food to meetings with the farmworkers, but the only place to buy food nearby was a gas station. Before the project started, the researchers met with a small group of farmworkers to be sure they were providing food the farmworkers were familiar with and wanted to eat. “You want to make sure you do the simple things so that you don’t start off on the wrong foot,” Gladney says. Holmes, who commutes from Kansas City, picks up food at restaurants on her way. To show they value the farmworkers’ time, project team members ensure that every meeting provides enough food so that the workers can eat during the meeting and take some home for the next day.
Other challenges remained. Many of the farmworkers had no more than a fourth-grade education, so the concept of research was unfamiliar to them. “The majority of people, whether they speak Spanish or not, have a lot of pride, and they’re not quick to tell you they can’t read,” says Gladney. So, the team used only images—enabling anyone to participate, regardless of literacy or language skills—in their surveys that assessed the farmworkers’ satisfaction with the meetings.
You want to make sure you do the simple things so that you don’t start off on the wrong foot.Suzanne Gladney, JD Migrant Farmworkers Assistance Fund
Confidence Is Key
Although people who live in urban areas might seem more easily engaged as research participants and partners than rural populations, that’s not always the case. Rebecca Johnson, MS, PhD, of Northwestern University, and her project team work with home care aides for homebound older adults in Chicago. Because of factors such as mobility impairment, varying education levels, and apprehensiveness toward research, it can be a challenge to engage both older adults and aides in research. So the project team sought to equip aides to participate in future research and serve as a gateway to engaging older adults. The team trained the aides to engage and communicate with their clients on health matters that are important to them.
“As researchers, we get so locked into research-speak,” Johnson says. “Even the phrase research engagement does not have an obvious meaning.” It was important to come up with terms everyone could understand, she says.
Because of the aides’ unfamiliarity with research, Johnson and her team tried “to make the idea of research very accessible, not abstract,” she says. They gave examples of how everybody does research on a daily basis, for tasks such as car shopping.
Every population requires a unique approach, but the strategies above can act as building blocks to effective engagement. For more information on the Eugene Washington PCORI Engagement Awards Program please visit the Engagement Awards page on the PCORI website.
November 28, 2018, 10:39 PM
Comment by PCORI,
Hi, Hong. Thank you for your comment.
September 19, 2018, 8:26 PM
Comment by PCORI,
Hello. Thank you so much for your comment.
September 4, 2018, 12:27 PM
Comment by Betsy Cawn,
I have been working on this issue here in Lake County, CA, for fifteen years, in the context of senior center program development and small community radio program production. Old fashioned organizing may work in some places (like my agricultural home town) but not in poverty-driven "communities" that are the ghettos of the inept. Distrust of government in general characterizes the response of local community groups (about one third of eligible individuals refuse to sign up for food stamps, for example). No one seems to understand the enormity of the unseen population despair that comprises the large number of families who hover just above the federal poverty line and are thus ineligible for those modest cushions that keep a lot of our residents just barely out of harms way (homelessness). I wish I had a buck for every time I've been in a meeting where someone says "we need to do more outreach" -- but won't listen to ideas and willing support to help them. It's also hard for us to be the fodder of "studies" that do not seem to have any direct relation to the circumstances and impacts we face every day. Nice of you to ask, but how exactly are these "awards" helping anyone but the awardees?
August 28, 2018, 8:57 PM
Comment by janice tufte,
These are excellent examples of how to meet people where they are at, not to make assumptions, ask what they want. Going into a community with an agenda often can go haywire. Inquire and see what the community wants, build trust, remain friends.
August 28, 2018, 8:21 PM
Comment by Hong,
Work with CBO to engage SUD patients
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