By Dr Jo Kesten, Research Fellow, Bristol Medical School.
This project builds on School for Primary Care-funded research aimed at increasing HIV testing and improving access to PrEP (a pill that prevents HIV) through general practice.
The Dragon’s Den project had two objectives:
- to develop and refine training for healthcare professionals
- to create public information to raise awareness about HIV testing and prevention and reduce stigma.
The training for healthcare professionals was designed to help them:
- understand the importance of HIV testing in general practice
- evaluate testing against national guidelines
- implement a simplified approach to testing
- adopt UK testing guidelines
- discuss PrEP with patients.
Public information was developed to:
- raise awareness of the GPs’ approach to HIV testing
- normalise testing
- reduce HIV stigma.
This was carried out in collaboration with the people who would be using the training materials and receiving the information.
Background
The UK Government aims to end new HIV infections in England by 2030. General practice could play a crucial role in this by testing more people for HIV and raising awareness of PrEP. Our research found that GP staff face challenges testing for HIV. PrEP is available for free on the NHS via sexual health clinics, but awareness and knowledge about PrEP are low among the general public and GP healthcare professionals.
What did we do?
We collaborated with Sayambrita and Zia, Caafi Health Ambassadors, to involve members of the public, particularly from ethnic minoritised communities whose voices are typically less heard in research. For GP healthcare professionals, we used existing connections from previous research to ensure diverse professional roles were represented.
We held three meetings with public groups identifying as female and male, both online and in-person.
- We discussed the best ways to share information through GP practices, reviewed example campaign posters, and discussed the messages and tone for our information materials.
- We shared draft posters, slides for GP practices, and a text message for practices to send to patients. We gathered feedback on positives, negatives, and possible changes to the materials.
- We discussed updated information materials based on previous feedback.
GP staff provided feedback on clarity, relevance, audio, design, slide speed, and persuasiveness in an online meeting.
Our findings
We learned a lot from this process. Our public contributors wanted the information to be positive, accessible, informal, conversational, and direct. They emphasised that while HIV is a serious issue, the information shouldn’t be scary and should highlight that HIV testing is a way to protect loved ones. For example some found a poster that used a lot of red alarming.
When informing people about HIV & PrEP, the language used was critical and group members stressed the need for information to also be available clearly in multiple languages and for there to be opportunities to speak to staff or learn more. Initially, using the word “medication” to describe PrEP was confusing, so we changed it to “tablet”.
We explained what PrEP does, how it is taken, who may benefit from it, and where to get it, including online, to address fear and shame when speaking in person. We aimed to avoid stigmatising by singling out groups. Additionally, we learned that the Government’s role in ending new HIV infections could be received negatively, so we removed that reference.
There were several challenges in ensuring our information was relatable and addressed the audience effectively. To normalise HIV testing, we had to balance raising awareness without making it seem too different from other tests. Cultural sensitivities posed challenges too, as topics like sexual health and HIV are often taboo.
Healthcare professionals felt the training was well-structured, and succinct. They recommended adding content to some slides to align better with the audio, but emphasised that the training should remain concise to maintain engagement. Links to additional resources on managing HIV diagnosis and localised PrEP information were suggested. Healthcare professionals appreciated training content that included patient stories. Positive aspects of the training included the focus on normalising HIV testing and the opportunity for self-reflection.
Our public contributors learned a lot from their involvement in this project.
Marsha Doran expressed that being part of the work was amazing and rewarding, as it helped communities understand their risk of HIV and raised awareness about the illness.
Andi Smart felt privileged to participate in the project, enjoying the development of resources to support professionals and the general public in increasing their awareness of HIV and the importance of testing. Andi also felt proud to see the project grow and develop:
“Taking criticism, even when constructive, is not easy, but the team were very receptive to feedback, leading to useful conversations around the project materials. Being part of this research project gave a real sense of belonging and purpose. It felt meaningful to contribute to something that supports the health and well-being of the community.”
Fariha Tasnim felt that participating in the project was an educational and eye-opening experience that deepened her understanding of sexual healthcare:
“The facilitators created a warm, inclusive, and non-judgmental environment, making it easy to feel comfortable, speak openly, and engage fully in discussions. The facilitators reassurance that “there is no right or wrong answer and question” encouraged me to ask questions freely and explore the topic with curiosity and confidence.
Throughout the sessions, I gained a comprehensive understanding of HIV: what it is, how it is transmitted, the warning signs, and whether it is curable or preventable. Most importantly, I learned about PrEP.
The knowledge I gained has been invaluable, equipping me with critical information for my health and well-being and enabling me to support others in making informed decisions about HIV prevention and sexual health. As a South Asian woman, I felt empowered to take an active role in conversations around sexual health, raising awareness, and helping others protect themselves from HIV.”
“Our input was valued, and we were fairly compensated. We appreciated the respectful space created by the facilitators, which allowed us to be heard and learn about important sexual health issues.”
Our conclusion
The meetings were enjoyable and sociable. Our community members provided fantastic insight and new perspectives on how to communicate information about HIV testing and PrEP. The materials were improved by working closely with members of the public. One of the public contributors in our men’s group felt that the poster we developed was better than the examples shown in the first meeting.
Our next step is to secure funding to test these materials and see if they help increase HIV testing. We plan to keep our public contributors updated with the final materials.
Dragon’s Den funding was critical; without it, we wouldn’t have involved the public in such a meaningful way. Our advice for others is to plan for as many meetings as possible to support getting to know each other and involvement in multiple iterations of your project.
