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How to achieve inclusivity and diversity in medical research: insights from a disability activist

Becca Wilson is a Research Fellow at the University of Liverpool and a disability activist, striving to improve inclusivity and accessibility in the academic sector. Following her recent thought-provoking keynote presentation at the 2021 European Meeting of the International Society for Medical Publication Professionals (ISMPP), The Publication Plan spoke to her to find out more about ableism within medical research and what can be done to improve heath equality. 

You have discussed the importance of normalising disability in academia and creating role models for future generations of disabled researchers. Your work to achieve these goals includes participation in advisory boards and campaigning for disability inclusivity policies. In addition, you were named as one of the 100 most influential disabled people in Great Britain in the 2020 Shaw Trust Disability Power 100 list and were recently featured in the British Science Association’s 2021 #SmashingStereotypes in science, technology, engineering and maths (STEM) campaign. Could you tell us a bit about your background and how you came to take on such an active role in pushing for disability equality?

“I acquired my disability when I was a junior researcher. Seven years ago, through a health condition, I found myself disabled and requiring use of a wheelchair. Because my disability was acquired, I know what life was like when I was ignorant of disability-related issues, ableism, and the discrimination that disabled people face. Up until that point, I had it very easy in both my social life and my working life – I had lots of time, could do what I wanted, and could be completely independent. Having acquired a disability and become a wheelchair user, suddenly I was faced with the reality that every single day, multiple times a day, I would be subject to discrimination both in society and in my academic work.

Having acquired a disability and become a wheelchair user, suddenly I was faced with the reality that every single day, multiple times a day, I would be subject to discrimination both in society and in my academic work.

I think that knowing what life was like before my disability has made me very vocal. I don’t see why it should be any different for me now in my career, for example. Why should I be treated any differently now, just because I’m a wheelchair user? Why should trying to progress my career be more difficult? Why should I not be entitled to assistance to achieve my career ambitions – assistance needed because, physically, I might not be able to do some aspects of the job? I think that’s why I started being vocal on Twitter, complaining about general accessibility issues like not being able to access rooms or buildings, and not being able to travel to certain countries for conferences (as there was no wheelchair-accessible transport).

My advocacy efforts slowly escalated from there when I realised that there are lots of people in the same position as me. More importantly, there are disabled high school and undergraduate students who are considering their future careers. They might want to take a similar career path as me and go into academic research, but there’s a substantial lack of role models for these individuals. That’s why I started trying to have more of a presence through social media and participate in more high-profile campaigns, such as with the British Science Association. I wanted to raise awareness that disabled people work and contribute across many business sectors and that if you have a disability, you can have a successful career in all sorts of areas.”

In your keynote address at the 2021 European Meeting of ISMPP, you mentioned that people with disabilities are underrepresented in clinical trials, which may bias research findings. How significant and widespread is this issue and how might it potentially impact those with disabilities?

“I don’t do research in the clinical trials area, but through a simple literature review you’ll quickly see that clinical trial publications don’t report demographic information related to disability. Often, you’ll have information about the participants – their age, sex, and sometimes ethnicity – and information pertaining to the health condition being studied or affected by the trial. I don’t know if disability information is collected as part of patient screening – it might be that it’s collected but not reported, or it might not even be collected in the first place. Either way, there is a complete lack of disability-related information published about the participants in clinical trials. This is very difficult to see, particularly when the trial is about something that affects the whole population, like COVID-19.

There is a complete lack of disability-related information published about the participants in clinical trials. This is very difficult to see, particularly when the trial is about something that affects the whole population, like COVID-19… The pandemic has highlighted the importance of collecting this kind of information – and reporting it.

The COVID-19 pandemic has highlighted the importance of pre-existing conditions and comorbidities and how these affect not just the risk of contracting an illness, but how it manifests, and the extent to which you respond to therapies. I think the pandemic has highlighted the importance of collecting this kind of information – and reporting it.”

Clinical trials often have strict eligibility criteria, which may prevent those with disabilities from enrolling. What other factors may contribute to the underrepresentation of disabled people in clinical trials, and how can these be addressed – either through trial design or at later stages?

“First and foremost, with any clinical trial design, patient safety is fundamental and any trials that do include people with pre-existing conditions, comorbidities and disabilities have to account for that. Obviously, a person’s health should never be compromised.  

When considering exclusion criteria, there is a benefit to recruiting healthy people into a trial: when you’re reporting the results, you’re less likely to have had any adverse reactions or problems, and perhaps this would bias your findings to be more favourable. Understanding whether or not participation in a trial is appropriate for an individual with pre-existing conditions or a disability takes specific clinical expertise to review the individual’s medical history and make a judgement. Ultimately, this time costs money. Perhaps it is faster – and I’m hesitant to say it, but easier – to recruit people who are generally healthier.

Understanding whether or not participation in a trial is appropriate for an individual with pre-existing conditions or a disability takes specific clinical expertise…Ultimately, this time costs money.

Some other issues with disabled people participating in clinical trials might include the requirement for participants to be able to give informed consent. There could be challenges around understanding what the research is, the level of involvement required and what participation means to them, or difficulties in giving signed, on paper consent. In these instances, can consent be given in an alternative format, such as a digital signature or verbally recorded? With certain disabilities, the patient information may not be delivered in a format that is accessible. Patient information leaflets are often printed on a piece of paper – are they available in braille or large print formats, and are any of the materials available as an audio file, for example? I think there are some barriers to engaging disabled people in research related to these methods of communication.

Patient information leaflets are often printed on a piece of paper – are they available in braille or large print formats, and are any of the materials available as an audio file, for example?

I also think that during patient recruitment, organisers could be more upfront about what support a disabled person would get with participating in the trial. In the context of a job interview, a disabled candidate might be asked to specify their reasonable adjustments, but that’s a very reactive way of conducting disability inclusion: waiting for the person that needs support to tell you what form of support they need. What’s really useful is when organisations are proactive about what support they can give to disabled participants, if they need it.

What’s really useful is when organisations are proactive about what support they can give to disabled participants, if they need it.

This support could include accessible taxi travel to the study site or the provision of a hearing loop. If the trial is being conducted remotely through video call, is live captioning available to participants? Speaking from my experience, when I’m offered opportunities, I often look to see what is available to support my participation. If this is not easily apparent, you’ll often self-select not to participate, due to the hassle of having to find out if the support is there. Taking up some of the strategies I’ve mentioned could help to diversify participants in trials.

In university research, we have a lot of patient and public involvement in the strategic direction and design of the research, and I think that this could be taken further. If you are running trials regularly, why not get patient advocacy groups or membership organisations for specific disability communities involved, in the same way that universities involve the public in their research?”

If you are running trials regularly, why not get patient advocacy groups or membership organisations for specific disability communities involved, in the same way that universities involve the public in their research?

Recently, a call to action for improving equity, diversity and inclusion in the medical communications profession was published in ISMPP’s newsletter, proposing open access and plain language summaries (PLS) as two factors helping to improve the accessibility of medical research for all. In your opinion, what are the main barriers currently faced by those with disabilities when it comes to accessing medical information? Do you think increasing adoption of open access and PLS will be beneficial, and what more can medical communications professionals do to make information disability inclusive?

“The recommendations to adopt open access and PLS are really quite powerful. For one, open access removes cost as a barrier to accessing information. Every single disabled person has significantly more costs in their life than non-disabled individuals: in most places you will get some sort of state welfare, but ultimately that does not bear all the costs of your care and you likely spend a sizeable portion of your personal finances on things related to your disability. Open access not only helps disabled individuals and patient advocacy groups to access information, but also benefits research and healthcare professionals in lower/middle income countries – I think it’s a great idea.

Open access not only helps disabled individuals and patient advocacy groups to access information, but also benefits research and healthcare professionals in lower/middle income countries.

In terms of barriers to accessing, or even understanding, medical information, a lot of the time the first thought I have is ‘is it relevant for me?’, the second thought is ‘is it for people like me?’ and the next thought is ‘were people like me included in the research?’. I guess the same is probably true for a lot of disabled people. If there is disability representation in the work, I think that disabled people will feel like they’re included in the scope of the research and that perhaps it is relevant to them. We also need to address the barriers in the way that we communicate, perhaps through considering the accessible formats I mentioned earlier. Not much information is currently made available in an audio format, and while we do now have text to speech readers for people who are visually impaired, sometimes it’s nice to hear the personality behind the message and have the information delivered in a more emotive way.

Not much information is currently made available in an audio format…sometimes it’s nice to hear the personality behind the message and have the information delivered in a more emotive way.

In terms of PLS, I think that these are a really great idea, but it’s important to go beyond the traditional, text-based summary of a piece of research and include graphical or pictorial representation. Images often reinforce key concepts and I think that this would be particularly valuable for some disability communities. It can also be beneficial for conveying health messages to younger age groups and those with reduced language fluency or literacy.”

In terms of PLS..it’s important to go beyond the traditional, text-based summary of a piece of research and include graphical or pictorial representation. Images often reinforce key concepts and I think that this would be particularly valuable for some disability communities.

In a recent tweet you highlighted that disabled people can be infantilised, being assumed to be unemployed or part-time workers rather than business leaders, for example. How can the language or narrative used in medical communications be modified to improve communication with disabled people while being cognisant of this issue?

“It’s about challenging that ‘Victorian view’ of disabled people: not all disabled people require care for their entire life or are unable to do things independently or make decisions for themselves. We need to recognise that in all of our processes and systems and everything that we do that might involve disabled people. Even the welfare system in the UK assumes that people applying are housebound and can’t have a full-time job or contribute at a high level in their career. It’s important not to assume that this is everyone’s disability experience.

In addition, it’s important to interact with people with disabilities in a respectful and inclusive way. There have been many occasions when checking in to a flight or hotel where staff have addressed the person I am travelling with, rather than myself, to confirm my own arrangements. This is the infantilising I refer to – the assumption that I wouldn’t know my own arrangements. Adults with disabilities are still adults, so communicate or speak directly with them, giving them eye contact rather than addressing their carer, interpreter or assistant to talk about them.”

During the ISMPP meeting, you highlighted that individuals with disabilities are underrepresented within the scientific research field, with just 4% of academic, research and teaching staff identifying as disabled compared with 19% of the UK general population. You suggested that unconscious bias training and the Disability Confident scheme (in the UK) could help to address discrimination during recruitment. For anyone unfamiliar with these ideas, could you describe how they can be applied? What other changes would you like to see to help increase the number of disabled people working in STEM?

“Disability Confident is run in the UK and supports businesses to recruit and retain disabled staff, allowing them to be much more diverse. From a disabled applicant’s perspective, it makes a massive difference: if you meet the core specifications, you’re guaranteed an interview with organisations that are part of the scheme. Without it, disabled applicants are judged by the same criteria as non-disabled applicants. A disabled applicant is expected to have the exact same success measures, the same performance levels, and to achieve the same successes throughout their career as someone who is not disabled. The reality is that part of disabled people’s time within work is spent addressing things directly related to their disability (such as care requirements), or their disability means that it is more difficult or takes longer to do certain aspects of their job. The Disability Confident scheme allows an organisation to address the time privilege that non-disabled applicants have over disabled applicants and helps to level the playing field. When applying for a job as a disabled applicant myself, I will often check a company’s website to see if they are part of Disability Confident or offer an in-house equivalent. For me, knowing that an organisation has already thought about equity at the recruitment stage gives me confidence that they are probably going to be more aware of disability issues in general, and perhaps will have a more disability inclusive working environment.

Knowing that an organisation has already thought about equity at the recruitment stage gives me confidence that they are probably going to be more aware of disability issues in general, and perhaps will have a more disability inclusive working environment.

As I briefly mentioned in my ISMPP talk, organisations will often have you sit unconscious bias training once as part of compulsory training. The issue is that as you only do it once, you often forget about some of the core aspects. I also think that there isn’t enough emphasis on disability awareness in unconscious bias training, and I can’t think of any organisations in the academic sector that do specific training for disability awareness. The reality is that in any organisation, you’re probably already working with someone who is disabled – they could be line managing you, you could be supervising them, or they could be a colleague you’re collaborating with. I would like to see compulsory disability awareness training because it’s relevant to everyone – particularly those involved in recruitment or management. However, I’d like to see this done in a way where it’s not one session that can be forgotten about – it needs to involve both a training course and having certain practices embedded within your organisation. Participating in the Disability Confident scheme, for example, will change the culture in your organisation, partly because you’ll start interviewing more disabled applicants than before.

I would like to see compulsory disability awareness training because it’s relevant to everyone…it needs to involve both a training course and having certain practices embedded within your organisation.

Thinking about what I’d like to see in the future, the statistics are shocking that 4% of academic research and teaching staff identify as disabled, compared with just over 20% of students in UK universities. For students, this is proportionally representative of the general population, but the diversity of the staff preparing them for the workforce is extremely limited. As the student population grows more and more diverse, that will put pressure on all organisations to recruit equitably as there will be more disabled graduates entering the workforce. I think we’re going to have a domino effect with this bottom-up pressure accelerating culture change in organisations.”

As the student population grows more and more diverse, that will put pressure on all organisations to recruit equitably…I think we’re going to have a domino effect with this bottom-up pressure accelerating culture change in organisations.

Has the COVID-19 pandemic highlighted any areas within medical research or healthcare communications where ableism is a particular problem? On the other hand, has the pandemic led to any positive changes in medical care or research which may have lasting benefits for disabled people?

“I think the reality is that it’s a mixed bag: disability, and mobility impairment, are on a spectrum and each type of disability has been affected in a different way during the pandemic. In terms of health and social care practice, there have been some benefits. For example, remote consultations with hospital consultants or general practitioners (GPs) have become normal and there are also now alternative, online methods of contacting GPs. That’s really helpful for parts of the disability community, like those who are mobility impaired. For me, it’s a great relief if I don’t have to go to the GP practice, due to the time needed to get my wheelchair prepared and navigate the pavements and people. Being able to have video or telephone consultations at home is great as it saves me so much time. However, these methods aren’t always accessible to colleagues with hearing or visual impairments – contacting your healthcare provider through an online form is fine, but it has to be accessible to screen readers. I don’t know whether GPs have been offering live captioning for video consultations for those who are hearing impaired – perhaps some patients are still able to attend in person. The other side of the issue is that during the pandemic some consultations and therapies have been stopped or delayed – including rehabilitative therapies. This is going to have a negative impact on the health of some individuals.

With the pandemic, we have been in an unusual situation where our understanding has been changing constantly, and we have been reacting rapidly to new findings and to policy changes in various countries. I think that there have been instances where communication with disabled people has not been clear and it’s been a bit of an afterthought. For example, sign language interpreters have not been included at Westminster pandemic briefings, although they have been for devolved government events, meaning that we are reliant on news channels to provide sign language interpreters for national public health briefings. Even now, it’s very easy for the communication requirements of disabled people to be forgotten. Disability charities and membership organisations have stepped in and filled this gap, often tailoring health communications specifically to the community they represent. For example, Mencap created easy read formats of the complex lockdown and tier rules explaining what you could and couldn’t do.

Even now, it’s very easy for the communication requirements of disabled people to be forgotten.

As we speak, we’re coming out of lockdown in the UK. The rules are that hospitality venues can open but you can only sit outside, so whole swathes of the country have put out seating on the pavements and in the roads (particularly in cities). A lot of this is completely impassable by people in wheelchairs, or impossible to navigate for those who are visually impaired, and posing similar navigational difficulties for people with pushchairs and young children. Absolutely no thought whatsoever has gone into how the policy change at a local level, effectively removing access to pavements, roads, dropped kerbs or crossing points impacts people with disabilities – it just hasn’t been considered. The priority has been allowing the businesses to reopen. If whole parts of a city are effectively impassable, there is a knock-on effect as disabled people can’t get to the shops and services that they need. The last thing you want to feel like is that you’ve been forgotten – that’s why the phrase in the disability activism community is always: ‘Nothing about us, without us.’ With examples of policy changes like that, we have been forgotten.”

The last thing you want to feel like is that you’ve been forgotten – that’s why the phrase in the disability activism community is always: ‘Nothing about us, without us.’

Finally, since you have been working as a disability activist, have you seen positive changes in terms of addressing ableism in medical research or communications? What do you hope will be achieved in the coming years to further improve the situation?

“In the 7 years since I’ve been disabled, things have definitely changed in academia. As I described earlier, students and graduates are becoming more diverse and so I think this will be an increasing pressure in terms of driving culture change and promoting diversity awareness throughout organisations.

Students and graduates are becoming more diverse and so I think this will be an increasing pressure in terms of driving culture change and promoting diversity awareness throughout organisations.

In academia, I think that more and more research funders are starting to think about diversity and inclusion. For example, Wellcome has had a major strategic review, covering research culture as well as research priorities, and they are being very aggressive in tackling the problems that have come out of the review. It’s very comforting to know that funders are now making changes to the types (eg length) of funding that they award, supporting disabled applicants to conduct research, and even accepting proposals in alternative formats (like audio or video applications rather than an online form). I believe that all of these small changes coming from the top down from funders and the bottom up from graduates mean that the research environment will be very different in 5 years’ time.

Historically, I would say that disability inclusion issues have always been in the background and sometimes forgotten about – when we talk about diversity, emphasis is definitely given to gender equality and race equality. I think that over the past couple of years, there have been several movements around equality and equity – things like Black Lives Matter and the Me Too movement – and people have started to question their own practices and think about inclusion as a whole, rather than just for one particular community. Fundamentally, this is how we change things: by making our working practices and organisations more inclusive for everyone.”

People have started to question their own practices and think about inclusion as a whole, rather than just for one particular community. Fundamentally, this is how we change things: by making our working practices and organisations more inclusive for everyone.

Dr Becca Wilson is a UKRI Research Fellow with HDRUK at the University of Liverpool, developing open source software for sharing, access and visualisation of sensitive health data. Alongside her work campaigning for disability inclusivity, including with the British Science Association, she has significant expertise in science communication and public engagement and is a member of the advisory board for Opening Knowledge across Research and Entertainment (OKRE®). She was named as one of the 100 most influential disabled people in Great Britain in the 2020 Shaw Trust Disability Power 100 list.

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