Working with Patients, Carers and Community Partners

We believe that it is only the public themselves that can decide what they need, and from what they will benefit, through using health data. Transparency and accountability are central to the collecting, processing, securing, and accessing, of public data to be used for public benefit.

Our priorities and research questions are co-designed throughout our public involvement work and we are building a network of patients and the public who are interested in being involved in our research and research management. We have embedded a team of public and patient representatives in our NIHR Imperial BRC Data Access and Prioritisation Committee to review all future requests by researchers to access data and we have a programme that enables researchers to involve and engage with the public throughout their work. If you would like to join our network of patients and the public interested in being involved in our research, please click here for more information.

The digital divide

Accessing healthcare through digital devices can be useful and beneficial for many of us, as it allows us to access advice about our health more easily, rapidly, and safely, for example, through teleconsultations. During the pandemic, many new digital health solutions (e.g. remote oxygen monitoring) were implemented very quickly which shows that the NHS can adapt to new ways of working.

However, accessing healthcare through digital devices can be challenging and cause real issues for some people, especially if we assume that everyone can use, and has access to, devices and technology. This so called ‘digital divide’ does not impact everyone in the same way and some people find it more difficult to get the help they need, than others.

Through engaging with our population from very different backgrounds across North West London, we are:

  • supporting as many people as possible are directly involved in our digital health work and can help us to reduce the inequalities that can be caused by the use of digital devices
  • actively attempting to reduce the digital divide by:
  • understanding the needs of our local community in order to shape our work, so that we do not disadvantage specific groups.
  • involving as many patient groups as possible in all aspects of our work with health data, in healthcare and in research to make sure it works for everyone.
  • Making sure our engagement does not miss out groups that research shows are specifically vulnerable

We ensure that:

  • all research projects requesting access to health data are reviewed by patients as well as academic and health experts
  • public and patient partners are members of our data access committees
  • we involve patients in shaping our work by co-designing our digital strategies with them
  • we communicate what we are doing and share our results in ways which the public can understand