International Day of Persons with Disabilities 2023 & reflection on our work with Purple Goat

The observance of International Day of Persons with Disabilities, first proclaimed in 1992 by the United Nations, aims to promote the rights and well-being of persons with disabilities at every level of society and development, and to raise awareness of the situation of persons with disabilities in all aspects of political, social, economic, and cultural life. According to the UK government, 24 percent of people in the UK are Disabled and the community makes up the largest minority in the world. Disability touches us all.

Over the past year, the NIHR BioResource has been working closely with inclusive marketing agency, Purple Goat, and members of the Disabled community to gain insight and feedback on how we can improve volunteer-facing materials and processes in order to ensure our marketing and comms strategy is inclusive and accessible to the Disabled community.

One of the main goals of NIHR BioResource is to become an all-inclusive resource of data for researchers, that enables vital healthcare research to be completed. This places even greater emphasis on ensuring that our volunteer pool authentically represents society. We recognise the importance of representing Disabled people in our volunteer pool and decided to team up with Purple Goat, whose mission it is to represent the voices and lived experiences of Disabled people creating authentic and innovative marketing and communication tools and campaigns.

Phase 1

Phase 1 of this project consisted of feedback sessions facilitated by Purple Goat, with seven diverse Disabled content creators and disability consultants, who all had different disabilities and lived experiences – including Visible and Invisible disabilities, Deaf people and those with Hearing Loss, Neurodiverse, Blind and those with Vision Loss and Physically Disabled people. The seven participants in the workshop were asked to feedback our:

1. Participation documentation (Health and Lifestyle Questionnaire, Information Pack, Saliva Collection Process, Data Collection Forms)
2. Promotional materials and social media
3. Future communication and volunteer sign up

Below is a summary of the key points of improvement from the feedback:

Participation documentation:

• presentation and clarity of information, questions, and instructions
• rectifying any ambiguities in wording
• addressing sensitivities and the purpose of questions being asked – this ensured that inclusive language and intersectionality are taken into account, so that participants feel respected and understood

Promotional materials and social media:

• visible representation is important to feel seen
• the value of a person’s participation and call-to-action needs to be clearly communicated
• addressing accessibility considerations when joining the BioResource
• addressing language disparities
• accessibility improvements for our website

Future communication and volunteer sign-up:

• a multi-channel approach is key as Disabled people use a variety of different platforms
• visible representation will actively encourage participants to become future volunteers
• amplifying personal stories on social media from members of the community with lived experiences increase engagement, trust, and authenticity as well as humanises the work of the BioResource

A key point raised throughout our discussions in the workshop was the need for representative imagery, so in the summer we held a photoshoot featuring five Disabled models. The aim of these images is to create a progressive, inclusive tonality to NIHR BioResource website and external comms. The photos were taken at the S2 Clinic on the Addenbrooke’s campus, and included clinicians from the Cambridge team, who take blood samples when volunteers register with us. The photos have since been implemented across our materials, such as our volunteer flyers, which are distributed across all NIHR BioResource Centres and at community and public involvement events.

Phase 2

During Phase 2, Purple Goat created two onboarding assets – Onboarding Disabled Volunteers and Information for Disabled Volunteers - that are reflective of the Disabled community and take into consideration adaptations in language, process and imagery accordingly. These documents mean the NIHR BioResource are better equipped to serve prospective Disabled volunteerss.

We also worked with the Purple Goat team to undertake some disability representation and inclusivity training for all of our staff members. The aim was to gain an general understanding about disability with a particular focus on the diversity in disability as well as how to achieve an inclusive environment at BioResource.

Finally, we collaborated with Purple Goat to create an animation video (below), which explains what we do, the process and ease of joining the BioResource, and our support of any accessibility needs a Disabled volunteer may have.

Purple Goat has tremendously contributed to a better understanding of how BioResource can better serve Disabled people and encourage their participation in health research. There is more work yet to be done, and we look forward to learning and doing more to make health research a more inclusive space.

Dom Hyams, Head of Strategy at Purple Goat, reflects on the partnership:

"It’s been fantastic working across a diverse array of communications activities with the BioResource team, driving insights, lived experience and authenticity into every aspect of our work together.

The team approached this project with a real willingness to take our learnings and iterate processes to make powerful changes moving forward, so the bioresource can continually strive to make health research open to all.

We look forward to maintaining our relationship into the future and continually developing the conversation around inclusion."

Interested in volunteering with the BioResource?

If you are interested in volunteering with the BioResource to be part of future research we support, whether or not you have a health condition, we’d love to hear from you.

You can keep up to date with NIHR BioResource on Twitter and LinkedIn.