For some people, our project will be seen as purely a technical one – developing a system that can process millions of blood test results and identify people with liver disease. In reality though the human side of our project is just as important, if not more so. We set out with the aim improving health, identifying people with missed disease, contacting them, assessing them and ultimately treating them. This part of the project presents just as many challenges as the technical side, and members of our team are constantly working on this.
One of the issues that we face is that healthcare teams are already over-stretched. Indeed, some people will think that we shouldn’t go looking for more patients, when we haven’t got all the capacity we need to treat the ones we do know about. This is clearly a valid concern. From the start we have factored in the question of how we will treat patients that we find. We need to strike a balance – whilst it might be wrong to call patients in when we don’t have capacity, then equally it may be wrong to ignore the information our system is producing, telling us about patients at risk. We are constantly aware that we need to strike an appropriate balance, especially as the project expands and gains traction across the NHS.
We also have spent significant amounts of time looking at the potential impact on patients who might receive a notification ‘out of the blue’ that they have a liver problem. We have addressed this in several ways. Firstly, whilst the healthcare community, the hospital, the funding bodies and our commissioners have all ‘approved’ our approach, what we really need is the perspective of the public and potential patients. Early on in the project we set up a public and patient engagement group to seek opinions. We invited them to a presentation to explain exactly what we were doing and the nature of the problems we are trying to solve. They expressed a variety of opinions. They definitely thought we should review tests to identify undiagnosed problems, but equally they recognised how it could be extremely concerning to be contacted out of the blue. We followed this up further with a different group. We tested out various letters, and information leaflets, and sought the group’s feedback. We have refined these and used other experts within the hospital to check our letters and leaflets – are they clear, are they easily understood, do they give sufficient information without overloading the patient with too much information? Whilst we strive to get this part of the project right, we will endeavour to respond to any feedback, always trying to improve what we do.
We have now reached the really important phase of the project where we are starting to invite patients for a clinical review and the first patients have already been seen in clinic. They have all been grateful for the work we have done, and to date none have said that what we are doing is wrong in some way. We are seeking their feedback and will incorporate that into how we call for patients, and how we write our letters and information leaflets. As time goes on this part of the project will evolve. We don’t think we can ever truly take away the worry and concerns that a patient will inevitably have when they receive a health-related letter, but we have set out to do our work in the most patient centred and compassionate way we can, responding to any feedback we receive.
Finally, we are reaching a phase of the project where we will want to roll out the system across the NHS. In order to help us with this we are setting up a ‘Public and Patient Reference Group’. Members of the public will have a huge opportunity through this group to influence the direction of travel of this project, focussing on the best possible outcomes for all patients.