By Jackie Glatter, Policy Manager, Alzheimer’s Research UK

Published: 24 October 2022

At Alzheimer’s Research UK, our vision is for a world free from the fear, harm and heartbreak of dementia. To achieve that goal, our work must reach every person with dementia and those around them, whatever their identity, experience and perspective. Equity, Diversity and Inclusion is therefore fundamental to the work we do.

With leadership support from our CEO, we have recently developed our second EDI strategy and action plan and I was hoping to gain some valuable insights from other organisations at the workshop, which would help inform Alzheimer’s Research UK’s work in this vitally important area. I wasn’t disappointed - a wide range of excellent and inspiring speakers were refreshingly open and honest about their experiences, progress and the challenges they had faced.

When you consider some of the cold, hard facts, it’s difficult not to feel strongly about the need for change. Data from UK Research and Innovation highlights that between 2014 and 2019, there have been fewer than five black fellows each year. Additionally, female researchers are less likely to become senior academics – something we drew attention to in our report, The Impact of Dementia on Women.

This imbalance carries through to the research that is undertaken.  People from particular ethnic groups, those from lower socio-economic groups, women and people with Down’s syndrome are at increased risk of dementia yet are underrepresented in research. This means there are significant gaps in our understanding and new treatments are not being appropriately tested in the populations that need them the most.

Given this context, it was very encouraging to hear from speakers at the workshop that there has been a significant and positive shift in EDI focus across the sector over the last five years. There are new career paths and dedicated funding streams for certain groups, for example post-doctoral black researchers. As Lilian Hunt of EDIS (Equality, Diversity and Inclusion in Science and Health) set out in their introductory presentation, ultimately, we must aspire to a point when there is no need for separate funding pots to address inequalities faced by particular groups, but we are not yet there.

Speakers from organisations including Cancer Research UK, the MS Society, Versus Arthritis and the British Heart Foundation shared their EDI journeys so far. I think it’s fair to say that most organisations are at a similar stage, trialling different approaches to address EDI challenges in the funding of research, and with strategies or action plans in place, but recognising that these are still a work in progress. 

One of the challenges that resonated was the sheer scale of what needs to be done. The response to this has been pragmatic: make a start, be honest about the fact it won’t be perfect and focus as much on the journey as the end goal

As Addy Adelaine said, when speaking about tackling racial barriers and biases in research, “This is complex – if it wasn’t, we wouldn’t be struggling. I wish good intentions were enough, but they are not.” A very helpful tip was to involve a group with EDI expertise and be willing to change in response to their feedback. This can uncover, for example, where steps could be taken to manage unconscious bias – there are a surprising number of different types of unconscious bias to be aware of!

It was clear that an essential ingredient for success is wide and meaningful engagement with researchers, people with lived experience and employees across the organisation from start to finish.  The importance of transparency to build trust was also emphasised, as was the value of drive and support from the senior leadership team to ensure this work is prioritised.

Of course, it’s not all down to research charities, and leads from NHS England (NHSE), the Health Research Authority (HRA) and National Institute for Health Research (NIHR) spoke about a range of initiatives to promote and support EDI in research. This includes toolkits (NHSE) and guidance (NIHR and the Medicines and Healthcare Regulatory Agency), specific funding to support regional engagement in research and the development of metrics that include EDI as a key measure of the effectiveness of research (NHSE).

There was clear value in bringing together such wealth of learning and expertise for this event so that organisations can take inspiration from each other and save unnecessary time and effort reinventing wheels. While it won’t be possible to change deep-rooted culture overnight, I felt a powerful sense that we are collectively moving in the right direction. With this momentum and the energy and passion that was evident from both speakers and participants, I am very hopeful that we will continue to see exciting and meaningful change across the sector.