NHS England - Transformation Directorate

Helping patients understand chronic kidney disease using technology

Patients can struggle to remember information that is provided to them during consultations. Studies found that 40% to 80% of the information is forgotten immediately.

The focus on patient empowerment and involvement in healthcare decisions is increasing. As such, information leaflets can help patients to better understand their health or condition.

However, a large number of patients struggle to understand written information about their health due to health literacy and language barriers. This is a growing concern as we try to tackle health inequality and inequity.

Around 3 million people in the UK have chronic kidney disease (CKD).

Many patients with a chronic illness like CKD find it difficult to understand health information.

Patients who do not understand their CKD are less likely to follow to treatment and advice, leading to poorer outcomes and higher cost of care.

Situation

The aim of the project was to evaluate how patients best understand and want to consume information about their CKD.

The common issues are:

  • written information can make health literacy worse
  • healthcare professionals struggle to communicate all key information in appointments limited by time
  • patients struggle to remember key information from the consultation
  • printed information doesn’t work for remote care

Aspiration

Royal Berkshire NHS Foundation Trust wanted to redesign its outpatient service. It wanted to focus on virtual care and remote ways to provide accessible and impactful patient education.

The Trust looked for a solution to present health information in an accessible and engaging way to support patients with CKD.

Solution and impact

The team ran a 1 year-long pilot to test using avatars (3D graphic characters) to educate CKD patients against the traditional methods.

The information was available to patients as:

  • interactive, digital avatar-led information
  • written information with diagrams

The avatars help patients to understand:

  • their diagnosis
  • what to expect at each stage of their condition
  • how to look after their renal health

The pilot showed that the interactive digital version was:

  • easier to understand (100% of patients understood the digital information vs 88% for written information)
  • easier to find relevant information (100% of patients said the digital information was easy to find vs 88% for written)
  • more effective in increasing the patients' knowledge of CKD (96% said their knowledge increased when accessing digital information vs 88% for written)

Functionality

Clinicians can:

  • access the information through the Healthinote platform or app
  • create personalised health information prescriptions which can be emailed or texted to a patient

The information:

  • is available on any digital device
  • can be viewed through VR goggles
  • can be downloaded and viewed without mobile data
  • is available in English and will also be available in Punjabi, Urdu, Nepalese and Polish soon

Capabilities

Animated avatars:

  • combine the best of in-person and digital care to help people live better lives
  • offer patients health information in an engaging way
  • improve health literacy and eases the burden on frontline staff
  • are available 24 hours a day, 7 days a week
  • can be saved and replayed

The avatars can also be shared with family and carers to ensure that patients fully understand how to manage their health. This means they can give informed consent for treatment and surgery.

Scope

The resource is designed to be used any time and anywhere. It allows patients to view the information in the comfort of their own home or their place of choice.

A similar programme for acute kidney injury will be created.

Key learning points

Multiple languages are necessary to enable accessibility for minority groups and help improve health illiteracy.

Digital equalities

Patients without access to digital technologies can get the equivalent information in written format.

Key quotes

“This pilot was incredibly insightful for us as we had the opportunity to really explore how people consume health information and whether they would accept the digital delivery of this information.

Our vision, through the programme, is to improve patient experience, enable them to be well informed, both in their self-care and avoidance of complications, as well as ultimately delaying CKD progression.

We are really pleased by the feedback so far. We are excited to continue to demonstrate the benefits of the programme across the wider community and the whole health and care system.”

Dr Emma Vaux, Consultant Nephrologist and Physician, Royal Berkshire NHS Foundation Trust

“Patients are increasingly health and tech savvy and as clinicians we have experienced instances of patients accessing inaccurate and often harmful sources of information in their quest to self-educate about their conditions.

This app provides high tech, high quality information making it more accessible to patients that struggle with literacy or find the convenience of new modes of accessing information more preferable and shows that there is a need for a library of such resources for numerous conditions and in the languages that our local patient population groups speak to help tackle language-based inequity in health care.”

Dr Rebecca Bowers, GP, Emergency Medicine Staff Associate Specialist, Royal Berkshire Hospital Foundation Trust and Long Term Conditions West Berkshire Clinical Commissioning Group and Integrated Care Partnership

Find out more

Case study on the Cognitant website

Project plan and details

Key contact

Alex Merckx, Director of Marketing and Partnerships

alex.merckx@cognitant.com

Emma Vaux, Consultant Nephrologist and Physician, Royal Berkshire NHS Foundation Trust

emma.vaux3@nhs.net