Medical Education and Students with Disabilities: Interview with Neera R. Jain

The AAMC (Association of American Medical Colleges) and the University of California, San Francisco, School of Medicine (UCSF) released a report on March 13, 2018 titled, Accessibility, Inclusion, and Action in Medical Education: Lived Experiences of Learners and Physicians With Disabilities. Below is an interview with one of the co-authors, Neera R. Jain. 

Tell me a little about yourself and your professional background

I am currently a doctoral candidate at the University of Auckland, Faculty of Education and Social Work, and I’m working on several relevant research projects: the Lived Experience Project co-funded by AAMC and the University of California San Francisco (UCSF) School of Medicine; one looking at the inclusion of disability in health professions curricula at the University of Auckland; and my doctoral research, which explores the idea of a culture of access for students with disabilities at four U.S. medical schools. I also serve as the policy advisor for the Coalition for Disability Access in Health Science and Medical Education, a young organization with a mission to “Develop, advance and disseminate leading practices to facilitate access and opportunity for people with disabilities in health science education.”

You and Dr. Lisa Meeks are Co-Primary Investigators of a study for the Association of American Medical Colleges (AAMC). What was the focus of that study and how did this project come about?

Lisa and I envisioned this project as a logical extension of the work we did at UCSF (she served as the Director of Student Disability Services there after I left), and with the Coalition. We focused this project on medical training because by this time, Lisa had moved into a focused role at UCSF’s medical school focused on student services and research.

What we saw was that research into disability inclusion in the health professions was generally lacking, and that empirical research that focused on the lived experience of disabled people in health professions training was almost non-existent. The few studies that did look at outcomes for disabled people in professional practice described significant barriers. There is a body of scholarship that discusses the need for greater inclusion of students with disabilities in the health professions, and the perceived challenges to doing so, but most of this is non-empirical commentary pieces, and much is focused on concerns about balancing patient safety with ADA obligations. Our work in disability services was informed largely by our experiences working with students, and those shared by our colleagues. We felt that in order to move inclusion of students with disabilities in medical education forward, research centering on disabled peoples’ lived experience was needed. How do students with disabilities experience their training? What barriers do they face, what factors facilitate their success, and what suggestions do they have to improve medical education?

We were fortunate to receive some funding from the AAMC to support this project, along with support from UCSF. A few medical school student affairs deans had seen our book and collaborated with the AAMC to invite us to deliver a series of webinars for their constituents about supporting students with disabilities in medical education. At the time, those webinars were the best attended of any the AAMC Group on Student Affairs had previously put on. I think this helped demonstrate the interest and need in this area. We were able to convince them that a research-informed report would be a beneficial next step to “move the needle” in this area.

We also benefited from a wonderful Harvard medical student, Stacy Jones, who served as a research assistant on this project, as well as volunteer research support from you (Alice) and Dr. Mijiza Sanchez over at Stanford Medicine. In New Zealand, there is this phrase “running on the smell of an oily rag,” which I think describes this project well. It’s something we’re all incredibly passionate about so we have kept the work moving forward on a very small budget.

Could you describe the people you interviewed for the study and what it was like for you and Dr. Meeks interviewing such diverse group of people by disability, geography, and background?  

When we first proposed this project, we anticipated interviewing 15 people: 5 medical students, 5 medical residents, and 5 physicians. We didn’t know if people would be willing to participate, or have the time. It’s the one thing we know medical students and professionals in general don’t have to spare, and we know that medical students and professionals with disabilities have even less free time.

We were blown away by the response we received. We actually received responses from more people than we could interview, and even responses from people outside the U.S. who were interested in sharing their stories. In the end, we interviewed 47 people: 17 students, 14 residents, and 16 residents. They had diverse experiences of disability, including mobility-related disabilities, learning disabilities, chronic health conditions, ADHD, psychological, d/Deaf or hard of hearing, visual disabilities, and ASD, with many describing more than one experience of disability. Participants included 32 women and 15 men who attended or are currently attending 39 medical schools. Among participants, five interviewees identified as LGBTQI and seven identified as underrepresented in medicine (URM). The 30 residents and physicians interviewed represent 13 medical specialties and subspecialties.

It was really fantastic to be able to have such a diverse group of participants. The existing images of medical professionals with disabilities are few, and certainly not reflective of the diversity we were able to speak to, and I know we are only scratching the surface of experiences. Nonetheless, I think the report will serve to expand the discussion in medical education, and set the stage for further exploration.

We interviewed people by Skype and in person – the logistics were complicated, particularly because I did all of my work from New Zealand. Lisa did in-person interviews, traveling a fair bit to do so. The interviews were scheduled to be 2 hours, though they often went longer. What we found was that for many participants, it was the first time they were telling their story, and we wanted to give them the space to do so. Often the substance of the interviews was quite emotional, and the interview felt like an incredibly important space to process experiences that had not been discussed before. It was truly a privilege to bear witness to and carry these stories with our participants.

What were the challenges and joys of the research process? What surprised you the most as you collected and analyzed the qualitative data?

I think the challenges of research are outweighed by the joys, but I would say the big ones are getting adequate funding to do the work, the time it takes to do the work well, and working with the sheer volume of data that we were fortunate to collect.  As I mentioned earlier, the interview process was really incredible – meeting all of these wonderful people, and hearing their stories. When you begin to see a story developing across interviews, seeing the challenges and opportunities illustrated so well by participants, that is where the joy comes in. Then, being able to put forward tangible considerations to the medical education community, being able to do research with purpose to make change, that is really excellent.

What surprised me the most? I guess how many participants had similar experiences despite the passage of time and the variety of schools they attended. Some students did have very good support and good experiences, but across participants, the challenges often looked similar, and this highlighted for me how much work we still have to do to improve inclusivity in medical education.

What are some of the main themes that emerged from the interviews with doctors and medical students with disabilities?

The main themes broke down into structural factors and cultural/climate factors that affected students’ experiences. With regard to structural factors, unsurprisingly the quality of disability services, access to appropriate accommodations (particularly in the clinical setting), access to specialist healthcare and wellness supports, and access to a formalized community around disability. With regard to culture and climate factors, things like attitudes, program climate, disability knowledge, having supportive administration, and relationships (such as mentors) were also themes that arose. We also included particular concerns that arose regarding the residency phase of training, where formalized accommodation request and implementation processes were often an area of concern.

What are the key findings from your report on how medical education can become more accessible and inclusive for people with disabilities?

The report lays out a number of key considerations for medical education as a whole, first, that a nationwide community is built to move forward this work within academic medicine. We suggest that disability liaisons are engaged within the AAMC’s existing affinity groups and advisory committees, to ensure that disability is on the agenda in relevant work that is already happening. We call for disability be integrated into diversity and inclusion initiatives. And finally, the report calls for disability be added to demographic queries in research and other statistical information that is collected, where possible, to improve understanding about the presence of persons with disabilities in medicine.

The report also offers numerous practical considerations to guide medical schools in critically reviewing their current practices, and enhancing them in line with our findings.

Do you have any thoughts on how this report will be received by administrators and faculty in medical education? What are some next steps you’d like to see?

In my experience, many administrators and faculty are hungry for information about how to best work with students with disabilities. They are looking for practical advice, and I am hopeful that they will find it in this report. I think there will be many people who are able to use this report a tool for change on their campuses.

Certainly, I anticipate that there will be some who challenge the report. That is to be expected with any report of this nature, particularly in a venerable field such as medicine. Doing this work well takes time, resources, and planning. Schools will need to do more work and invest more to improve the status quo, this is always a challenge in resource strapped environments. The payoff in doing this well, however, is high for everyone involved, students, faculty, patients, and the medical profession as a whole.

I would love to see schools take the considerations we offer in the report and do a comprehensive review of their current programs and climate to see where they stand, and develop a plan for progressive improvements to improve their practices and address the climate of their institution to be more inclusive of students with disabilities. Current students with disabilities should be included as advisors in this process.

With your past experiences working on health science campuses, how far do you think most schools need to go when it comes to recruiting, accommodating, and retaining students with disabilities at the graduate level? 

Most schools focus their work on admitted students, and work to recruit students with disabilities is fairly new. Recent regulations tied to renewals and requests for NIH T-32 grants and Medical Science Training Programs (MD/PHD programs) require a recruitment and retention plan to enhance diversity that includes disability. This has prompted schools to begin including disability in their recruitment and retention plans. That said, I think much more can be done in this area to attract qualified applicants with disabilities.

One of the things I’ve been thinking about a fair bit lately is pipelines. We are seeing growth in access to STEM in K-12 settings, but generally the health professions are not included in STEM initiatives. I know that some disabled students of color benefit from existing health professions pipeline programs, but to my knowledge there are no disability-focused health professions pipeline programs. I think a fair bit or work is needed in K-12 and undergraduate spaces to develop interest and foster belief in the possibility of medicine or other health professions among disabled youngsters.

Once students are admitted, what we know is that their experiences of accommodations support is incredibly mixed. I’ve been fortunate to work at two institutions that saw a need to increase investment in this area, and it was very successful. When at least one person is in place whose sole job is to work in this area, issues are uncovered, practices improve, and real change can happen. Health science accommodations are so different from your average undergraduate setting, due to the clinical requirements. Disability services needs to be well connected to trusting school administrators, and supports need to be informed about the nuanced clinical settings and the possibilities for accommodations including emerging assistive technology.

I think attention to all of these areas will help in retention of students. That said, I have found health professions schools, medicine in particular, to be incredibly dedicated to retaining the students they admit. A great deal of investment goes into each student, and they will go to great lengths to support those students to thrive. The key considerations outlined in the report align well with this commitment.

Do you have any advice for prospective med students with disabilities as they explore different schools?

First, I would encourage them to do their homework – if possible, talk to current medical students or graduates with disabilities who attended schools to find out about their experiences. Find out about the kind of disability services available, have a confidential conversation with the person in charge to find out what kind of accommodations they’ve provided to students in the program before, and how they work with students in the clinical phase of their training.

Second, I would encourage them to connect to mentors, ideally physicians with disabilities, who can help to support with accommodation ideas, tips for navigating the hidden curriculum, and general support. Unfortunately there are limited venues finding mentors at the moment, but there are great organizations such as the Society of Physicians with Disabilities and AMPHL (Association of Medical Professionals with Hearing Losses) that allow for networking, and actually AMPHL has recently begun a mentoring program. There is a group of medical students with disabilities organizing nationwide in this area, and I’d encourage prospective and current students to stay tuned for more information about their work..

And finally, I would encourage students to seek support in their programs. I’ve spoken to many students who are hesitant to seek accommodations or other supports based on concerns that revealing disability will preclude their ability to be successful in medicine, and they struggle in silence. Accessing support is the first step to finding a smoother path through training.

 

Is there anything else you’d like to share with me?

I would like to thank you both for giving me the opportunity to share this work with DVP, and for your help in the research. I would also like to add a sincere thank you to our participants for sharing their experiences with us, and to AAMC and UCSF for supporting this research. It has been an honor and a privilege to do this research, and I hope that it sparks meaningful change in medical education – the work is only beginning!

About

I am a rehabilitation counselor by training, I attended Boston University, where the program had a disability studies underpinning. That training awakened my understanding of disability within a human rights framework. I started my journey in higher education disability services when I was hired at Columbia University as a Disability Services coordinator, the first dedicated staff member to work with their health sciences campus. I really enjoyed working with graduate students in the health sciences and following Columbia, I became the Director of Student Disability Services at the University of California San Francisco (UCSF), which is a completely health sciences focused graduate level university. When I started there, I was the first full-time person to work in disability services in the university’s history. It was a fantastic opportunity to build upon the good work already done over the years—UCSF has a proud history of supporting students with disabilities in health professions programs. I moved to Aotearoa New Zealand several years later, and was able to continue working for UCSF remotely to support the new Director. While in New Zealand, I also served as the Manager of Auckland Disability Law, a free legal service for disabled people that is part of the Community Law movement. In 2015 I co-authored and co-edited the book, “The guide to assisting students with disabilities: Equal access in health science and professional education” which provides guidance for people supporting disabled students in health professions education.

Twitter: @NeeraRenee