Kidney Essentials: improving patient information through co-design

The project aimed to evaluate how patients best understood and wanted to consume health information. 

Through consultation with patients, the project team produced information in two formats:

• written information with diagrams
• immersive, interactive animated digital information

Given the incompatibility of paper-based leaflets with virtual consultations, the project also wanted to test the acceptability to patients of delivering this information digitally and remotely. It tested delivery via smartphones, tablets and in virtual reality alongside virtual Outpatient Department and GP consultations.

A multi-professional group worked with patient leaders to co-design, shape and influence the content, format and implementation.

Berkshire West Intgrated Care Provider built on previous work to redesign outpatient care, recognising an unmet need for accessible and timely patient information. 

Watch the trailer of the interactive, avatar-led programme:

Despite delays and communications challenges brought about by the COVID-19 pandemic, the team:

• developed and co-created a patient-friendly curriculum for chronic kidney disease and an accompanying questionnaire for evaluation
• designed a patient information leaflet for both print and online access
• delivered an avatar-led, interactive patient information programme, including prototyping, user testing and full programme development
• released this into the Healthinote platform for patients to access the content remotely
• shared all versions of the chronic kidney disease content with patients to collect their feedback through questionnaires
• and analysed the data and initial questionnaire responses collected to gain insights into patient’s preferences.

Several challenges emerged throughout the project, not least those posed by the COVID-19 pandemic. Aside from this, the project experienced the following challenges. 

Lack of connectivity

The technology to send the resources to patients digitally in secondary care was lacking. Primary care colleagues were able to share the resource through SMS systems but in secondary care they were reliant on posting written information. 

Quality and quantity of digital feedback

It proved challenging to get patients to complete feedback questionnaires. 

Approximately, 11% of all patients who sent the information responded with paper-based questionnaires that were provided with a prepaid envelope, with the majority of those using written information only.

The feedback via the online questionnaire was very low. 

Barriers for older patients

The app-based approach proved a barrier for some patients with CKD, particularly those in older age groups. Of those who only used the written information, three patients did also state in their questionnaire responses that they do look for health information online even though they did not access the app. 

This suggests that a web-based version of the content would improve accessibility for some patients.

The project:

• developed and co-created a patient-friendly curriculum for CKD and an accompanying questionnaire for evaluation
• designed a patient information leaflet for both print and online access
• delivered an avatar-led, interactive patient information programme, including prototyping, user testing and full programme development
• released this into the Healthinote platform for patients to access the content remotely, in six different languages with over 3,000 users to date
• shared all versions of the CKD content with patients to collect their feedback through questionnaires
• and analysed the data and initial questionnaire responses collected to gain insights into patient’s preferences.

Nearly 90% of patients that used the CKD education materials produced for this project said that this information helped them to know more about their chronic kidney disease.

Patients using the interactive, avatar-led programme engaged with it for an average of 7 minutes and 1 second per session, which is considerably higher than the industry standards for patient information websites (typically between 1–2 minutes). 

Of patients who responded to feedback questionnaires, 57% of patients viewed the printed written information only, while 43% of patients accessed the digital resources. 

The questionnaire results, coupled with the encouraging uptake and time spent engaging with the programme data, indicate that patients using the interactive, avatar-led programme found the content easier to understand. 

They indicated it was more effective at educating them on how to manage their CKD than the standard practice of providing printed information leaflets. However, the sample sizes are too low to draw definitive conclusions and further data collection about patients’ experiences is required. 

Patient involvement is key

Working with patients and an external supplier to create patient information resources provided insight into what information really mattered. 

The project team gained a better understanding of what patients really wanted to hear about, which sometimes differed from the medical information clinicians felt necessary or more important. 

Reducing unnecessary appointments paved the way for innovation

COVID meant that the work the team had already been doing to care for CKD patients without calling them into hospital was all the more important. Testing the acceptability to patients of receiving information about their condition remotely and the best format for this became even more crucial.

A holistic approach across teams requires more planning

Working in cross functional teams can make working together more challenging. However, the project took a much more holistic approach as a result. 

Good planning and scheduling of diaries well in advance and careful planning of meetings with clear objectives became key to success. Part of this was considering which attendees were needed and at what stage in order to use team members’ time effectively.

Technology is a big enabler

Both as a route to providing interactive education to patients even when seeing them remotely, and as a way to connect as a team, technology proved to be an important enabler in this project.

In partnership with University of Reading (UoR), the team evaluated the next phase of the programme’s growth and identified key barriers and enablers, such as system integration and digital literacy, and described strategies to scale the programme across the NHS. The learning identified is now informing a scholarly approach to explore barriers and facilitators of behavioural change in this setting.

From September 2024, Emma Vaux is acting as the academic advisor for a PhD student at UoR, focusing on ​‘Optimising shared decision-making/personalised care to promote positive behaviour change in early stage chronic kidney disease’.

The programme team is also participating in the Getting Scale Ready course, led by Q and delivered by Spring Impact. This course will help the team develop a strategic framework to scale and reach 3 million people with CKD.