Today we’re announcing a call for two part-time Patient Voice Advisors for NHSX, as part of a big push to make sure the patient voice is properly built into everything we do. They will hold us to account on how we involve patients and citizens, and make sure that patients’ voices are heard at every level of our work.
The whole point of improving technology in the NHS and social care is to make life better for the people who use these systems. So it has to make sense to involve them in the design of digital services. Because no one knows how people will respond to an appointment booking service, or a diabetes management tool, or a care plan better than they do themselves.
Better patient involvement means better tech
For most of the technology world, involving end users in service development and design is a standard operating procedure. And there are some great examples of user-led design in the NHS and social care system.
Take the NHS website. Everything on the site, from the language used to describe symptoms to the location of information on healthy living is based on hours and hours of user research. With the NHS App, we have been continuously testing, improving and retesting it to make sure it’s fully accessible for people with all sorts of needs - from vision issues to cognitive differences like autism and dyslexia - always looking to improve our understanding of individuals’ needs.
But we have not been consistent enough in how we involve patients. So we are missing an opportunity to make our services as useful as possible. As Matt Edgar, NHS Digital’s associate director of design and user research has frankly put it: “People in national roles can be scared of public engagement, because we don't always know how to do it well, and we fear that it may derail our existing plans.”
Patient involvement workshop
Getting this right really matters, especially as we move to a world where patients increasingly become active drivers of their own health, rather than passive recipients of care. It’s why in September, staff from NHSX and NHS Digital teamed up with a group of patient representatives to find out:
- how do we make patients aware they can get involved in the design and development of digital services?
- how do we make teams more aware of patients’ right to be involved?
- how do we make insights from citizen engagement visible to all teams, so we’re not duplicating effort?
Patient involvement playbook
From the discussion, the group developed the groundwork for a playbook setting out what good likes when it comes to patient and public involvement in a digital services context. You can find it here and these are the emerging key themes:
- Involve people and patients at every stage. This should mean a seat at decision making boards, engagement through user research, and a voice in how new services are implemented and communicated.
- People’s voices need to be valued at every level, including at senior levels in organisations and programmes.
- Value existing networks - work with national and local charities and patient groups to ensure a diverse range of views and inputs are heard.
- Engagement with patients is most effective when you are specific about the problem or question you are trying to answer.
- When beginning a new digital service or programme of work, have a plan for how you're going to involve people from the outset.
Helen King, a patient rep at the workshop, challenged us:
“There’s a huge amount of enthusiasm, goodwill and support from patients and citizens to work together with NHS organisations on service design. One of the challenges seems to be how will NHSX and NHS Digital harness this energy and make sure there is momentum and longevity - not just another one-off conversation on patient involvement that is here today and gone tomorrow?”
This is an evolving piece of work, and I’m keen for as many people as possible to feed in from a patient or carer perspective. I’m also determined that NHSX starts living these principles as an organisation.
So if you are reading this and you think you could provide strong advice and challenge to the NHSX senior leadership team on how we ensure that the patient voice is heard throughout our work you can find out more here (scroll to the end of the webpage). Applications close on November 29.
“Nothing about me without me” is an ideal we’ve not always delivered on in the past. Modern technology means we really can now put the patient at the heart of the service.
Interested in becoming an NHSX Patient Advisor? Find out more here