Harry and I recently worked with Connected Health Cities in Manchester, exploring new ways patients could give consent for health data to be used for research. Connected Health Cities are a research group that improves health services for patients in the North of England.
As Will Dixon argued in a recent guest post on our blog, there are challenges around building public trust for the use of health data for research. It’s important to find ways to strengthen public trust so that health data can be used to improve care in new ways. To explore this, we looked at how to build and maintain trust in a scenario where health and social care data could be linked for research purposes. We focused on learning about when and how to talk to people about research, and finding new ways people could state their preferences.
At the start of the week we interviewed a range of experts, including clinicians, information governance officers and researchers, to learn more about how consent is currently collected. We visited a clinic to learn more about a patient’s journey through hospital. Then we designed some paper prototypes to show to patients. Below are some of the prototypes we tested and our findings.
The right time and place to talk about consent
At the moment, most communication about consent for research is in the form of posters, leaflets or conversations with clinicians.
Patients who come to this clinic typically see their clinician every 6 months for fifteen minutes. This is their only opportunity to discuss their health with their doctor. Their main priority is to get the right treatment and get better, not give their consent for researchers to use health data. We thought it would be interesting to look at existing communication around a hospital visit to see if there are better moments to talk to patients about consent.
We looked at whether an appointment letter would be a good time to talk to patients about research. When we showed it to people, one person told us how they keep appointment letters: “I’d hole punch this and put it in my folder”. They thought this was something they would save to read in their own time. For another person, it gave them enough information to make a choice, already deciding: “I’ll be opting out of that”.
Giving patients time to discuss and consider their choices
Many people told us how hard it is for patients to understand the risks and benefits enough to make an informed choice. For example, one person said: “It’s not possible to get total understanding in a few minutes”. We think giving consent should be part of a journey and not something people should decide in a single moment.
To explore this, we showed people different ways of making choices, either online or speaking to a clinician. We also looked at what kinds of information people needed to make a choice. One person wanted to see exactly what would be shared, saying: “I’d like to see records before connecting them”. A couple of people told us they wanted to talk to someone impartial about what their options were.
Patients need to be able to withdraw consent easily
Currently, giving informed consent involves reading and signing a long consent form. In our prototypes we wanted to explore alternative ways of collecting people’s consent that are more visual and engaging. After someone gives consent it can be difficult to withdraw it later on. We heard from people that: “knowing [a decision] wasn’t set in stone helps them make more comfortable decisions,” and that it’s easier to say: “Yes, for now”. We really liked the idea that you could ‘make’ and ‘unmake’ your choice at any point, and tried to test a consent choice that felt reversible.
We found that visually showing what people were consenting to helped them ask specific questions about what was happening and why. One person asked: “Does that mean all my records?” and “Where are they kept separate?” Once their questions had been answered they felt happy to give their consent but only if they were kept updated: “I’d give consent for everything but I’d want to stay informed”.
Sharing results of research to build trust
We heard that telling patients about research results helped them see the value of what they had contributed to. We also identified it as a key moment to see how information was used and whether people’s choices were respected. It was interesting to think about different ways you could share results with people, particularly if the information used in the research had already been de-identified.
In testing, a couple of people responded really well to seeing the results of research, telling us: “I think it’s great you’re feeding back” and “I love the idea my information can help research”. They wanted more information about the impact and benefits of the research. One person wanted to see examples of exactly how records were used and by whom, to make them feel more comfortable with how researchers had used health data.
The sprint was a brilliant opportunity to explore and design for the challenges of asking patients for consent. We learnt about the kinds of information people need to be able to make informed choices. We heard that patients wanted more control over what information would be shared with researchers and what would be kept private. We also identified key moments in the consent journey where building trust was important for patients to feel their wishes would be respected.
In the next stage of this work, we’ll look at the technical challenges of building a digital consent process and develop some of our concepts into digital prototypes.