Published: 30 November 2022

AMRC, in collaboration with NHS England and several AMRC charities, have published a report that highlights the vital role charities play in digital health. It shares case studies and outlines key learnings and recommendations from a collaborative project exploring how charity digital content can be better signposted.

Learnings and reflections

1. There is a lack of awareness of the vital role medical research charities play in digital health 

One of the main challenges during the project was building an understanding with stakeholders of the vital role of charities and what they bring to the partnership.  

Medical research charities have unique relationships with the people they represent and have unparalleled understanding of what patients need. Many charities have developed high-quality health information and support services available online, such as risk checker tools, chatbots and tailored advice. These vital resources bring huge benefits to patients by empowering them with the right information they need to understand or manage their condition.  

The vital role of charities in digital health:

  1. Charities have close relationships to patients and their priorities
  2. Charities develop high quality, specialist digital information and tools
  3. Charities are trusted, household brands
  4. Charities have important links with healthcare professionals

2. A closer partnership with the NHS has resulted in positive progress, but there is still a long way to go  

Closer partnership with the NHS has resulted in positive progress, for example creating a partnership approach between charities and the NHS to more effectively signpost to health information on websites. However, there is still far to go and momentum must be kept up.  

3. There is a limited understanding of the accreditation that charities need for the NHS to signpost to their information or services.  

There are initiatives underway to help organisations provide high-quality, evidence-based information, for example the Patient Information Forums’ PIF TICK indicating a quality mark for health information, and the NHS’ revamped Health information standard. However, improved guidance is needed to demonstrate how these initiatives interact.  

4. The digital health landscape is complex, but charities working together can accelerate progress  

Rapid digital developments have resulted in a landscape that is fragmented and its not always clear how charities can add their value to the equation. Navigating this landscape with a collective voice meant that the group could achieve more progress than the sum of its parts.  

In order to accelerate progress, we make the following recommendations: 

  • We call on NHS England to involve health charities in the development of health information on national digital channels like the NHS app, website and login.
  • We call on NHS England, and those directly responsible for commissioning providers (e.g. ICSs and local teams), to consider medical research charities as important stakeholders to involve.