Understanding Patient Data x Comuzi
Towards the end of March the Understanding Patient Data team (based at Wellcome Trust) & Comuzi began a really interesting journey to explore how we ‘inspire health and social care services to find new ways to develop people’s understanding of health data and its wider impacts’ .
In layman’s terms — patient data is consistently used beyond the interactions we have with the healthcare system, whether that be your recent visit to the GP or my malaria admission to the hospital about a decade ago (fun fact — I’d just come back from Nigeria where I went to boarding school for three years)!
This data is used for research, planning and improving the health system. It is sometimes shared with partner organisations, with the positive intention of improving healthcare for all of us. For example, knowing a condition affects a particular demographic in society means better targeted treatment & help for that group., But this analysis can be done without us giving explicit consent, which we will all have differing thoughts on.
As part of our approach called ‘radical creativity as a service’, we kicked off a series of three packed back-to-back framing sessions to establish a foundation & direction for the project ahead. During these sessions on Google meet we combed through:
- Why the UPD team commissioned this project, risk tolerance & how we mitigate against established risks.
- Goals, values & what success & failure is particularly as we are running this remotely during a sensitive time!
- The key characteristics of our target audience, looking at demographics & psychographics.
This week we’re at the immerse stage, where we are scheduling conversations with the public & invaluable healthcare professionals to understand their healthcare journeys (personal/career), & relationships with patient data.
We’ve been adapting our interview approach because of the current social meeting restrictions, including testing various tools to meet the digital literacy levels of our participants. After various tests across many projects we have changed our remote interviewing platform from Skype to Google Meet; it allows video recording and is accessible without downloading via Google Chrome.
COMUZI has also been exploring how to record phone calls to lower the barriers to entry for participants, in addition to navigating how we ask for consent from the participants in a way that they understand within these circumstances. When we’re talking about something as personal as health data, it’s critical that we ask for consent in a way that is clear, comprehensive and sensitive to the individual. We have successfully been testing recorded calls, with recorded consent and are ready to move forward.
Taking lessons from previous research in this space, we know that you cannot assume a public participant will immediately know what this work on patient data is about. Completing our preparations for this immersive stage, we reviewed how we framed all our questions to address this with the amazing Understanding Patient Data team. We are giving context and examples alongside our questions to help participants connect with our work.
This is the first of many weeknotes by Understanding Patient Data & Comuzi where we will be documenting relevant updates on the project. We’re learning so much about navigating projects during the Covid-19 era that we will be sharing as we go!
Edited by Grace Annan Callcott
Written by Akil & Rich
