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Nothing About Us Without Us: Involvement in Research from the Perspective of Persons with TBI and Family Members

Categories: Professionals, Research

By Irene Ziaya1, Marvel Vena1,2, Candace Gustafson1,2, Carolyn Rocchio1,2, Michelle Maust1,2, Alan Smiley3, Bill Smiley3, John D. Corrigan4, Susan D. Horn5, and Jennifer Bogner4

How many times have you heard about the results of a research project and thought, “So what? How do those findings affect me?” or “Well, we already knew that… they spent that much money only to confirm what we already knew?!”

These sentiments not only reflect the frustrations of individuals living with the effects of traumatic brain injury (TBI) but are among the most discouraging comments that rehabilitation researchers can hear. Ultimately, the value of research lies in its ability to improve the lives of the people being studied – this is, or should be, the common goal of individuals (or “consumers”), principal investigators, funders, and policymakers.

For more than 50 years, there has been a growing recognition that, in order to maximize the value of research, consumers must be engaged as collaborators. Within the field of rehabilitation research, this evolution was stimulated in the 1990s when the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) began to require that study proposals include plans for Participatory Action Research (PAR). Through participation of consumers, PAR helps to ensure that the questions being addressed are relevant and that the findings will be important to those most affected. Action implies that the results of the studies will be used to spark change that will improve lives. To put it simply, PAR is a process by which consumers and investigators put their heads together to identify a problem, come up with a solution, and act to resolve the problem. More recently, other funding sources, including the Patient-Centered Outcomes Research Institute (PCORI), have chosen to support projects based in part on the extent to which patients contributed to the original idea for the research, helped design the study, and were involved with implementation of the study and its findings.

Beyond the financial incentives offered by funding agencies, investigators have begun to realize that there are many important benefits of consumer involvement. In addition to identifying research questions that are important and relevant, PAR also ensures that: (a) the research is conducted in a way that will be most applicable to real life; (b) the findings are interpreted from the viewpoint of the persons affected by those findings; and (c) the conclusions will be easy to access and usable by persons with brain injury, their family members, and the treatment providers who serve them. Consumers should be an integral part of the research team because they bring a different and extremely valuable perspective to the work.

As with all research methodologies, the value of patient/consumer engagement in research lies in how well their involvement is utilized. The role of the consumer in the research process has been slowly evolving. As experienced research advisors and collaborators, we have observed the changes throughout the years and have accumulated a set of “lessons learned” about what works and what does not work in PAR. The remainder of this article will provide tips for both consumers and investigators describing how to collaborate in the research process to produce findings that affect lives. For investigators and consumers who have been collaborating for many years, perhaps our tips will help improve the process. For investigators and consumers who are approaching PAR for the first time, we hope our tips will help get you off to a good start.

Recommendations for Principal Investigators

  1. Avoid tokenism. Early versions of PAR (which are sometimes observed today) included a single consumer who was expected to represent the viewpoints of all persons with TBI and their family members. It is widely acknowledged that every TBI is different, as is every person who sustains a TBI. A single stakeholder would not be able to represent the needs and perspectives of persons with TBI and their family members as well as would a group of stakeholders who have had different life experiences and could therefore offer opinions informed by their diverse perspectives.
  2. Consumers must be involved from the beginning, helping to formulate and shape the research question. Our ideas have the potential to be ground-shifting and may completely change the course of the proposal if we are brought in early enough to affect the actual choice of a research question.
  3. Be aware that everyone has unique strengths and knowledge to bring to the research. Just as a research team often includes experts in content, statistics, and writing, consumers on the team have a range of expertise that we can offer as well. Expertise and input differ based on life experiences, injury cause or severity, and even the time since injury. Talents will also differ. Some consumers will be particularly gifted in generating ideas, while others may be more helpful in identifying practical applications to real life. Some consumers may be the voice needed to convey the findings to other consumers and the public in general.
  4. Trust the process. Allow free discussion and brainstorming. While this may initially appear to be a group of disjointed topics, the real issue will eventually rise to the surface. Oftentimes, the best ideas emerge when the process is allowed to unfold naturally. Be flexible in your thinking, remain open-minded, and get ready to be wowed.
  5. Request clarification when you are unsure about what a comment means. Rephrasing a statement can often help determine what the consumer really meant and can stimulate additional discussion if others in the group were unsure of the consumer’s intent as well.
  6. Translate statistics into graphics and real-world examples as often as possible. Burying participants in numbers can lead them to become disengaged in the project, especially if they do not work with statistics regularly. Charts, graphics, and real-world examples are an easy way to be inclusive and maintain engagement.
  7. Recognize when accommodations are needed to maximize consumer involvement. Some accommodations may be very subtle, like tolerating a change in the direction of a conversation because a consumer brought up an idea that he or she was afraid to forget if he or she did not speak up right away (see above). Another example could be watching for body language indicating that the consumer has something to say but is having trouble breaking into the conversation. Provide frequent breaks and healthy snacks to help maintain endurance and active participation. Other accommodations may be less subtle and may require input from consumers to be most effective (see Consumer tip 10).
  8. When the research needs consumers who have recently sustained a TBI, consider where potential candidates are in their adjustment to injury, and prepare to accommodate accordingly. Some people who recently sustained a brain injury may not be able to participate as advisors because they need to focus on their recovery. It is also possible they are unable to consider the needs of the larger brain injury community or are not aware of the impact of their injury on their life or the lives of their family members. Consider including family members who can help to provide input about the challenges experienced after TBI.
  9. Standing advisory boards can be more effective than ad hoc groups for engaging participants in the research process. Many times, ad hoc meetings, such as focus groups or other one-time opportunities for gathering input from consumers, are held to prepare a grant, but these may not be as effective as an established advisory board. Established groups have the advantage of giving advisors more time to understand the study and to build ideas. As a result of their long-term involvement with the group and with each other, consumers develop an understanding of how each study serves as another piece in the larger puzzle that will ultimately lead to better treatment and outcomes for persons with TBI. For example, since the Ohio Valley Center Advisory Council began in 1991, its members have participated in an envisioning process to guide the course of the Ohio Valley Center’s research every five years since that time. Their ideas have evolved through the years and, as a result, so have the Center and its research agenda.
  10. Seek diversity in consumer input by including family members and consumers from a variety of genders, racial/ethnic backgrounds, economic circumstances, and lived experiences. In addition, try to include those residing in different living situations.
  11. Individuals and family members living with the effects of brain injury are an integral part of the research team. Show respect for our ideas by acknowledging our contributions. Use the same standards as are used with other research team members to determine how we should be acknowledged. If we contributed to the writing of a manuscript, we should be co-authors. If we advised from a greater distance, we should be named in the acknowledgments with others who provided similar contributions. If we are doing the work of a co-investigator, we should be paid for our work.

Recommendations for Consumers

  1. Speak up. Your input is as critical as that of the other research team members. Your knowledge is unique and you can make a valuable contribution to the research in sharing it with others.
  2. Trust your instincts and opinions. This is a corollary to Recommendation 1. Sometimes you may not be able to state why you have a specific opinion, but it likely emerged from your lived experiences.
  3. No question is stupid. If you do not understand some of the information that is presented, ask for clarification. Many times, if you did not understand, others did not understand either. Keep asking for clarification until you understand what is going on.
  4. Help principal investigators to understand, learn, and respect perspectives of consumer advisors and collaborators. Provide them with resources and input to help them see the perspectives of persons with TBI and family members.
  5. Recognize your assets as well as your limitations. For example, read the provided written material as many times as you need to in order to absorb new information before a meeting. Recognize the limits of your endurance and take breaks as needed. Meetings are more enjoyable – and you will be able to provide more creative input – when you are well-rested.
  6. Bonding within the collaborative research team is essential. Collaborators can become a better functioning team through face-to-face meetings and regular communication.
  7. Take time to listen to what others are saying; it may help you generate new ideas.
  8. Are you ready for involvement of this type? Most individuals with brain injury experience a “me” phase, when the focus is on regaining one’s lost self. It is important to work through this stage of recovery before collaborating on research as an advisor. As consumers get to know others with brain injury and become more involved in the brain injury community through support groups, they will be able to share a more comprehensive experience.
  9. If you are a family member, you are coming from a very different place than a person with brain injury. Be sure to share your impressions and ideas as a family member. You are needed. You see the individual with TBI in all settings and situations and have developed practical approaches to managing a variety of problems.
  10. Assist with identifying helpful accommodations to maximize your involvement. Request materials ahead of a meeting and allow ample time to process the information. Review the minutes from previous meetings to assist with recollection of past discussions. Be aware that principal investigators may fall short of their good intentions, so you should provide feedback when accommodations are not working.

Persons with TBI need research in order to improve the care and services received and to ultimately improve lives. Sometimes it may be difficult to understand the value of research. By participating and contributing to research as advisors or collaborators, family members and persons with TBI will improve their understanding of research and enhance its value. We hope these “lessons learned” will encourage other consumers to contribute to research endeavors and will help principal investigators use consumer input wisely.

Definitions

  • Consumers: Persons and family members living with the effects of brain injury
  • Research team member: Any member of the research team, including consumers, family members, clinicians, statisticians, research methodologists, and principal investigators
  • Principal Investigator: The leader of the research team
  • Collaborator: Participant on the research team, often a co-investigator
  • National Institute on Disability, Independent Living and Rehabilitation Research: Primary funding body of disability and rehabilitation research, formerly housed in the U.S. Department of Education and now housed in the U.S. Administration for Community Living
  • Patient-Centered Outcomes Research Institute (PCORI): Independent, nonprofit, nongovernmental organization authorized by Congress to fund comparative effectiveness research studies
  • Comparative effectiveness research: Research that compares the effectiveness of various health care options

Affiliations:1Co-investigator, Comparative Effectiveness of Rehabilitations Interventions for TBI (TBI-CER); 2Member of Consumer Advisory Group, TBI Practice-Based Evidence Study; 3Ohio Valley Center Advisory Council; 4Ohio Valley Center for Brain Injury Prevention and Rehabilitation, Ohio State University; 5University of Utah

Research reported in this article was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award CER-1403-13476). The opinions in this work are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee.

This article originally appeared in Volume 10, Issue 4 of THE Challenge! published in 2016.