Here in the NHS Alpha team in Leeds, our discovery research has explored the current user journey of patients interacting with NHS services. It builds on research the team has already done to establish user needs in research sessions focused on diabetes and mild depression.
We have focused on users who have multiple long-term conditions to understand how these combine to impact on their journey through the NHS. We want to make sure that services we design meet user needs and also grow the team’s understanding of how we map the patient experience. This blog is about how we approached our research given the sensitive topic of people’s health and how we planned our research around our users’ needs: going to them, using non-invasive methods and being a witness to their story.
When everyone is a user
We started off trying to identify who our users were and initially thought that they may be everyone – cue panic and shouts of ‘we can’t possibly do this! It’s too big!’
After a strong cup of tea, I managed to calm the situation down and get people to look at it rationally. We used the Health and Social Care Information Centre’s Quality Outcomes Framework data to create a list of the top ten most prevalent long-term health conditions so that we could focus on researching with users that have the greatest needs of our health services.
Everyone’s journey is emotionally unique
First challenge over, but there were plenty more. Health is a sensitive subject and is particularly complex for patients with long-term health conditions. The people we were planning to interview would have been through some traumatic experiences and we were asking them to re-live that for our research. What’s more, every individual will have been through their own individual journey, irrespective of whether they have the same condition as someone else or not. For example, the varying forms of cancer may affect individuals and their families in different ways.
We also had to consider the practicalities of the research. Participants may have mobility issues, anxiety, a plethora of appointments and many other issues that affect their daily lives and ability to take part in research, for example restricted availability and ability to travel.
Building your research around your users’ research needs
So what did we do?
We used an ethnographic approach and did in home interviews at a time suitable to them.
Filming interviews and conducting them in a lab has its place in research, however in home interviews are also a standard research tool used widely and have a respected academic background. In our case, not only did this approach allow us to understand the context in which users were interacting with NHS services, but also meant that users had what they needed around them such as medication, support equipment, documents, and carers on hand if necessary. Our users did not need to travel anywhere, were in an interview setting convenient to them and a setting that was comfortable.
They were in a safe place to tell their personal story and we were the privileged guests to this unique storytelling.
We didn’t film them, we didn’t put them in the unfamiliar surroundings of a lab, and we didn’t have a group of people staring at them from behind a one-way mirror.
We put their needs first.
Being a witness
Our interviews were deliberately unstructured. This was discovery research and not product testing so we were deliberately open in our approach. We had a topic guide but our first question was ‘so tell me about yourself’. This was often followed by a two hour solo performance of the user’s NHS journey, a personal folk tale told around a campfire. This is exactly how it needed to be. We were witnesses to their journey, their experience, their trauma, their recovery.
They were able to take control of the interview and share the things they wanted to share, rather than just tell us what they thought we wanted to hear.
Whilst they told us their story, we noted it down on a timeline using post its and a roll of paper. This meant that the user could see their journey and the notes we were capturing as well as providing a basis for more in-depth discussion, once they had the opportunity for their story to be heard. At the end of the interview, we rolled it up and took it away; it was their present to us, a gift to be treasured, much more than anonymous data to be analysed.
We then met as a team to review what we had learnt from the interviews, identify key themes and develop user needs from our analysis. The journeys that we captured are being used to focus developments for users over the next few months and ensure that what we produce meets their needs.
So how do you plan your research around your users’ needs? Go to where they are comfortable, don’t use invasive methods, be a witness and let them own their story.