In the spring of 2020, my almost 4-year-old daughter Livie sustained a severe traumatic brain injury (TBI) when a tree branch fell on her head in our backyard, devastating our whole family. Returning home after five months in the hospital, the real journey began: How do we best care for and support our daughter, who cannot do any daily activities on her own, cannot walk or talk, and has become cognitively impaired?
Her mother and I were consumed with keeping her alive, modifying our home to meet her enhanced needs, identifying an army of clinicians to help a 4-year-old who did not truly understand what was happening to her, all while trying to support the rest of our family and maintain our own physical and mental health. Our two young sons lost their playmate and were simultaneously starving for parental attention. What used to be the organized chaos of caring for three young children became just chaos. Still, during what we were told was a critical recovery window after her injury, we pushed our daughter to engage in a vigorous therapy program.
As it happens, I have been a rehabilitation researcher for two decades. But as we struggled to help Livie to recover from her injury, my professional background turned out to be less of a boon than I had expected. In the end, the whole ordeal was more revealing of my academic field than vice-versa: It showed me that rehabilitation engineering was, and is, utterly unaware of the real problems of families affected by neurological injury.
Those familiar with academia know the high-pressure cycle that seems to define a researcher’s value. We conduct rigorous research studies, publish them in peer-reviewed journals, use those publications to obtain research funding reviewed by peers, and repeat. We keep participating in this oftentimes masochistic process despite lower pay than we could get in industry because we love it and believe it will improve lives.
But this system is missing real input from the people on whose behalf we are working. This problem is especially true in the rehabilitation community, where researchers often do not have personal experience with the disability they are studying and thus cannot sufficiently understand the problems of those affected. I know this because I was one of those researchers.
In 2020, I was working as a professor in mechanical engineering at the University of Texas at Austin, specializing in rehabilitation technology. I had launched a rehabilitation research consortium of various scientific and clinical disciplines across campus, and my wife worked for a biotechnology startup. After Livie’s TBI, I recruited as many resources as I could to help her recovery, armed with state-of-the-art knowledge and technical capabilities.
However, the numerous devices my lab developed for Livie were frequently too hard to set up, didn’t engage her enough, didn’t fit in with her busy schedule, or didn’t quite match her abilities. I learned a great deal about what factors influence implementation and how the priorities I valued as a scientist were not necessarily the ones individuals seek.
The emotional, logistical, and physical toll of Livie’s care, coupled with the realization of just how limited my research expertise is to help her, has been soul-sapping. Even with our family being somewhat, but vanishingly, financially secure and with relevant professional expertise, getting by takes everything we have and sometimes more. Neither words nor face-to-face interactions can fully describe these severe and intersecting challenges. This is the essence of lived experience: It must be lived to be fully understood. I now can see that the rehabilitation research community must fully include this perspective to advance the field, and we are not there yet.
It is true that funding organizations are making efforts to better incorporate diversity, equity, and inclusion. One of the major rehabilitation funding programs at the National Institutes of Health now asks researchers to describe how lived experience is included in the proposed work. Before my daughter’s injury, I would have been more than satisfied with these efforts. However, I am concerned that these well-meaning programs are bandages on the bigger source of the problem: lived experience is not treated as vital expertise in rehabilitation research. Without addressing this underlying issue, I am afraid the current efforts will be ineffective at ensuring inclusion.
My personal conversations with thoughtful and empathetic academic colleagues have revealed what researchers fear saying publicly. For example, I have heard: that including people with relevant lived experience holds back science; that if it really helped to include views of those with disabilities in our research, then the field would be doing it already; that people with lived experience are biased toward their own problems; and that there are not enough people with lived experience who want to participate in research.
Some of those statements are poor excuses, others are wrong.
I wonder: How would those same people feel if they had personal experience with TBI? When they are faced with medical decisions with no clear data behind them, or the difficulty of coordinating care, or the multitude of issues with just trying to get out of the house in the morning? Would they trust that researchers, accountable only to the opinions of other scientists, are working on the most relevant problems? Would they care if research was held back if they could see it was going in the wrong direction? I imagine they might arrive at similar conclusions as I have: Scientists are biased, too, and if we accept taxpayer funding under the guise of helping people, we should be accountable to the people we are trying to help.
A colleague of mine, Kim Anderson, has a spinal cord injury and was recently admitted to the National Academy of Medicine. In a landmark 2004 publication, she revealed that contrary to most researchers’ assumptions, people with spinal cord injuries value upper limb and sexual/bladder function more than regaining the ability to walk. With this simple information, a significant amount of research and millions of dollars changed direction to better meet the actual needs of patients.
Years ago, before I met Anderson and other key leaders, I would have doubted the ability of people with TBI to meaningfully contribute to technically complex and hyper-competitive rehabilitation research. What I see now is a wide communication gap between experts and the patients they serve. I see clinically important problems left unaddressed because they are not interesting or trendy enough for researchers. One striking example is that NIH has funded spinal cord injury research at over $3.5 billion and cerebral palsy at over $1.4 billion, while pediatric severe traumatic brain injury, with a similar level of incidence, received only a $68 million investment from NIH since 2007, the first year reported for funding for the latter condition. Further, these statistics do not divulge the clinical relevance of those investments.
The out-of-whack funding distribution has had direct implications on both our family’s ability to make medical decisions and Livie’s prospects. When I observe my field, I see researchers satisfied with the status quo because they do not see a whole universe of silent suffering.
Researchers can develop more empathy by spending time with individuals with neurological issues, especially outside the clinic and in social situations. Through this they will gain, as I have, a more realistic understanding of all the problems patients and their families face: inadequate communication with doctors, lack of appropriate resources, objective information, and rehabilitation personnel, struggles with insurance, finances, physical handling, schedules, and the Wild West of alternative therapies.
Science needs more than empathy. We need to include input, experiences, and insights from people affected by conditions like brain injury in the entire research process, including leadership positions that set the funding agenda, conference planning, and studies. Those in the disability community see how all of life’s pieces fit together and the challenges with implementing new therapies. We understand our own needs and want a say in how public money is spent in our names. The rehabilitation field needs to value the opinions of people living with the issue as much as those of a physician or scientist. There are existing inclusion models for more directly incorporating such experiences in research, and the wider rehabilitation community and the funding agencies need to broadly adopt them.
Since Livie’s accident, my research has pivoted toward incorporating therapeutic activities into people’s daily lives using technology, particularly for adults and children with TBI. And now I partner with other caregivers and people with brain injury. In short order, it has helped me understand what their real issues are, how to adjust my inclusion criteria and outcome measures, and how to connect with the community.
I hope no one else comes to know the drastic consequences of a neurological injury like my family has. However, through this experience I gained perspective into a whole new dimension that cannot wholly be taught. Considering this, a system that limits or excludes the opinions of those that can benefit from it is neither wise nor just.
James Sulzer is staff scientist at MetroHealth Medical Center and associate professor in physical medicine and rehabilitation at Case Western Reserve University in Cleveland, Ohio. He is a member of the board of directors of a nonprofit toy adaptation organization, RePlay for Kids, and a member of the United Cerebral Palsy National Research Council. His research focus is in developing novel rehabilitation technologies for people following neurological injury.