Building evidence and insight on whole-person care needs for living well with HIV

This autumn, funding for the INTUIT research programme ended and we completed data collection across the team.

Our final study has been conducted at the Royal Victoria Infirmary in Newcastle upon Tyne, working with a multidisciplinary team of healthcare professionals who deliver HIV care, and with patients at the hospital clinic. The study has explored multiple perspectives and experiences of working with patient-generated data (PG-Data).

We have considered the value of capturing Patient Reported Outcome Measures (PROMs), and what aspects of everyday life activities and experience can be helpful to capture and share at clinic – and how (e.g. diary making). We have explored different ways to visualise (picture) what’s captured – for sharing at a routine clinical consultation.

We’ve also explored the potential opportunities and risks of incorporating the latest technical innovations – such as chatbots driven by Artificial Intelligence (AI) – into services that support communication between a patient and their team of HIV care providers, and how experiences of living with COVID-19 may shape perspectives on care management and communications between patients and clinicians. Data analysis is currently underway and our aspiration is to deliver research evidence that can shape the development of tools to support HIV PROMs tools in the clinic.

It has been a privilege to work on this study, and we are very grateful to all of our partners and participants who have so generously given their time and consideration to contribute to this and all the linked studies on the INTUIT programme.

We were fortunate to be able to reflect on the INTUIT programme this autumn with two inspirational advisors who are stakeholders in the research and who have also been involved in the studies. We thank NAT (National AIDS Trust) who kindly hosted us at their London offices to meet with INTUIT Strategic Advisory Board (SAB) member Ant Babajee.

In a reflective interview, Ant helped us recognise how INTUIT outputs could offer value to our stakeholders. He highlighted the collaborative (co-)creative nature of the programme and how our focus on understanding complex lived experience may inform person-centred care provision. In Ant’s words:

“To live well with HIV somebody living with HIV needs to be supported in all areas of their life, not just with their medical care for HIV.”

We thank Blue Sky Trust for hosting us to meet with BST’s Engagement Officer, Becky Walker. Sitting in the cosy Living Room at BST, Becky reflected with us on the great value of place-based peer support for the HIV community, as part of the circle of care that helps people live well and thrive with HIV, alongside clinical care.

BST have generously supported the INTUIT team over the last four years by hosting and facilitating workshops and meetings, which has provided a trusting, respectful and safe space for sharing experiences and for collaboratively developing creative ideas for design. In Becky’s words:

“The women enjoy doing creative things and the INTUIT gave them the opportunity to do that. And we know that if people are creative, they are not idle. If you are idle, then you just keep your mind keeps going round and round. … Sometimes you are not able to talk about your feelings, especially of living with HIV. But then when you've got that skill to write a poem or write a piece, whatever it is, literally, it just relieves you.”

We are indebted to the advice and support we have had from Ant, Becky, and our community representatives on INTUIT. We continue to be inspired and guided by their advice and insight.

Looking ahead: we will consolidate our study findings into further reports for publication, and we are currently conducting impact activities. These activities include policy-informing sessions with partner representatives at HIV charities in the UK and through the networks that we have built, supported by our fantastic SAB members, who we are also sincerely grateful to. We have built a legacy website for the INTUIT programme and will update this website with findings and impacts, and spread the word about this via social media and mailing list.

If you are interested to keep informed about INTUIT findings, please email Abi Durrant (Principal Investigator) abigail.durrant@newcastle.ac.uk to join the mailing list.

Written by INTUIT team.