BlogFrom the frontline: Seeing the patient in the data
Victoria Wray is the Advanced Analytics Clinical lead at Sussex Partnership Foundation Trust. She discusses how they developed a data visualisation tool that helped clinicians to provide more effective treatments for their patients suffering from mental health issues.
Victoria Wray, Advanced Analytics Clinical Lead, Sussex Partnership NHS Foundation Trust
20 May 2021
I work in a large mental health trust where patients may have several interventions with us over a number of years.
We are seeking a change of culture that means data is a part and parcel of every day clinical thinking that gets us beyond targets. We knew the data visualisation tool we had wasn’t working because staff just weren’t using it.
So we needed to get people involved in shaping the tools so they were fit for their purposes. Clinicians, for example, told us they wanted the ability to produce reports that presented a full picture of a person’s history.
They wanted to be able to track a person across a period of time to see what other interventions had taken place and how their treatment was progressing. It was useful for them to see if there were certain patterns of behaviour and if there were particular triggers that induced those patterns.
The original tool was very limited in terms of the data that was used to populate the patient timeline visualisation, which was in itself very basic and unappealing. Using Power BI, Microsoft’s business intelligence platform, to visualise our patient data has enabled us to create better visuals and make patient data easier for clinicians to understand and use.
The original patient timeline included spells of treatment with the Trust, episodes of treatment with specific teams and admissions to inpatient settings. It did not show if a person had received a care plan, risk assessment or the types of intervention.
Users were unable to see patterns which could help provide insight as to what was happening to a person. For instance, if a person cancelled or did not attend a series of appointments before an inpatient admission, such behaviour can be an indicator of a person's deteriorating mental health.
The result was a tool that was so high level it left the user needing to return to the patient notes to search for the details they need, which is very time consuming.
To redesign it, we knew we needed to engage with all our stakeholders if it was to be at all useful.
We contacted the Helix Centre at Imperial College London's Institute of Global Health Innovation, which is an inter-disciplinary group of designers, technologists, clinicians and researchers who develop evidence-based digital solutions to improve health. They worked with us for several months, engaging with our users to develop principles of how to implement user centred design within the organisation.
How did we engage with staff?
It is important that the vision and benefits of the work is understood and supported by frontline clinicians, their managers and strategic leads. These people are the key to bringing this new timeline visualisation into every day practice.
We set up a steering group with representation from the Trust’s different treatment delivery services to give us their views. We also ran focus groups, semi-structured interviews and 1:1 interviews.
The groups ran over a period of several months. My role as Advanced Analytics Clinical Lead was central to the effective engagement of clinical and service user groups within the project. Because I have a clinical background, I was able to quickly establish good relationships and a shared understanding with the participants, which helped secure their commitment.
Both clinicians and operational leaders gave us some good guidance on how they would like to see the data laid out, what charts worked well and what didn’t. They are busy people and it was important they were able to quickly and easily interpret the data.
How did we involve people who use our services?
We had service user representatives on our steering group and conducted focus groups with people who have used our services and their carers.
This brought a really valuable perspective not only on how the timeline visualisation should look and what should be included, but also how it should be used to support patients and their carers. Having informal carers, who play such a huge role in the NHS, as part of the development work was really important.
Our ambition is that the timeline visualisation will eventually be available directly to patients and (with patient permission) their carer, via direct online access to their carer record.
How did we come up with the right design?
We incorporated feedback and adapted and altered the tool until we came up with three options.
We showed them to the steering group so they could decide what was the most user friendly.
These are the use cases identified through user involvement for the timeline visualisation:
Use cases included:
Individual clinician preparing to see a patient or for a multidisciplinary team patient case review.
Patient/carer reviewing care with clinician.
Multiple teams working together with the same patient.
Preparing information for a caseload review.
Preparing information for a funding application or similar.
Patient timelines aggregated to provide data for Key Performance Indicators at team and service level.
We had anticipated 1 to 3 but had not identified use cases 4 and 5.
We did not take forward use case 6 due to technical limitations, which would significantly delay progress to deployment.
The way the timeline is designed now supports these use cases. If we hadn’t included users in our approach it would have been a much narrower tool and less useful to staff.
By really focussing on the users, it gave them a strong message that they had the permission to tell us how to develop our reporting to serve their purpose of making improvements in care.
Different ways of using the tool
Developing the timeline visualisation in this way has meant we have created something that's been useful across the board – within learning disabilities, children and young people with mental health issues, adult mental health services and forensic mental health services – people with a higher risk of poor mental health in the criminal justice system.
For clinicians, data and reporting felt like a distant world from their clinical roles. Through this process they have come to feel much more in control and the use of data is a growing resource for them in their daily decision-making.
These principles for how we approach our work from a user perspective that have been established through this process, now informs all of our new data developments and are being incorporated in our data strategy.
Everybody involved had a good experience and felt they were able to influence a change towards data enabled working where information can be easily accessed and used to improve the patient experience and their outcomes.
Victoria Wray and Dr Gurprit Singh Pannu talk about how they engaged with their users at Sussex Partnership NHS Foundation Trust to develop a better data visualisation tool for clinicians.