Working as a doctor in the NHS for over 10 years, I felt that I had developed good understanding of how patients and their families felt when faced with an upsetting diagnosis or important health decision. I had been lucky with my own health, having only spent one night in hospital for what ended up being a false alarm. But when my son was born prematurely two years ago, I had a glimpse into what being on the other side feels like - an experience that has profoundly shaped my thinking today.
It wasn’t until I was waiting to hear, rather than give, important health updates that I really understood the feeling of uncertainty and powerlessness that many patients and their families feel. It really put into perspective how important it is to involve patients, and their families and carers, in their own health - that care is not something ‘done’ to a patient, but rather, something that is shaped by everyone involved in the healthcare process.
In my first week at DeepMind Health, I was really impressed that one of my new colleagues (not a nurse or doctor) had set up a meeting so we could hear directly from a patient, Michael Wise, who ended up needing dialysis and a kidney transplant after a sudden and unexpected problem with his kidneys. Since then, we’ve continued to increase our efforts to bring the patient’s voice into our projects. Afterall, there is good evidence that when doctors and patients work together, the outcomes are better.
We’ve already learned a lot about how to go about this - and what not to do - and wanted to share some reflections that may be helpful for others undertaking the same journey we’re on.
To build cutting edge and secure health technologies we always work with experts. This may be a clinician or some of the world’s best cyber security experts. Similarly, when thinking about patient and public involvement and engagement (PPIE) in our work, there are experts who understand how to do PPIE well. In early 2016 we started speaking to a number of individuals and organisations with this expertise. We worked with the late Rosamund Snow, an incredible person and the patient editor of the British Medical Journal, to shape what a Patient and Public Involvement and Engagement (PPIE) strategy might look like. Rosamund was initially sceptical of our work in healthcare. She pushed us to be more self-critical and transparent about our work, and made a number of recommendations she felt would allow patients’ voices to have the biggest possible impact on the work we do, such as having an entirely patient-led project, inviting patients to do internships at the DeepMind Health offices, and hiring a patient lead to feed directly into our work. We are currently working with patients to flesh out some of these ideas.
Rosamund passed away shortly after our first patient summit in September 2016 but she had introduced us to some of her colleagues, Sally Crowe and Paul Buchanan, with whom we continue to work.
For that summit, we invited patients, carers and members of the public into our offices in London to discuss Rosamund’s recommendations. Attendees disagreed with the idea of having a single patient lead, with some feeling that a single person couldn’t possibly represent the diversity and complexity of the patient community. Instead, they wanted a patient panel to be involved in every project we do, working alongside the design and clinician teams. This is something we’re looking to build on.
We also received feedback in areas that we hadn’t considered, such as the location of the event. While many patients really enjoyed seeing where we work, some participants found the DeepMind offices too intimidating. This was incredibly useful feedback to hear. Since then, we’ve committed to holding subsequent events in a mixture of both our offices and more neutral locations, such as Friends House in London and the Renaissance Hotel in Manchester, which we used for patient roundtables in July 2017.
At those events, we continued to receive feedback on Rosamund’s recommendations. Attendees asked us to reflect on the language we use regarding patient case studies. We often talk about ‘patient stories’ or ‘patient testimonies’ which some attendees felt didn’t carry enough weight. Instead, they said we should use ‘patient truths’ to empower patients, and emphasise the authentic and authoritative voice patients add to the conversation. Similarly, they questioned the way we talk about DeepMind Health. We usually describe our work as ‘clinician led’, which ignores the valuable input patients have given to our work. In future, they suggested we used either ‘clinician led and patient centred’ or ‘co-led by clinicians and patients’ to highlight the equal involvement of both groups.
Similarly, we received feedback on the role we played in the room. We heard that some attendees would feel awkward talking directly with DeepMind staff, so we worked with external facilitators to run our events in July, where we took a back-seat role. Playing an observer was really enlightening as attendees seemed far more free to speak their mind, but others felt that they wanted to talk to us more candidly. In our future events, we plan to balance the use of external facilitators with more involved methods where we can directly engage in a dialogue with patients themselves.
We will be working with patients to build out their valuable suggestions into core practices of DeepMind Health. If you’re interested in seeing what happened in those July events, you can see watch this video of some the attendees sharing their thoughts on our work.
We have learnt a lot from other people and organisations, like the Coalition for Collaborative Care (C4CC), National Voices and the Patients Association, to help us learn how to work with patients better. They have outlined what a successful and mutually respectful collaboration model looks like, emphasising clear communication, a transparent sense of direction, and a culture of honesty and value.
We’ve already benefited from the thousands of hours of patient engagement, including one to one sessions, events at our offices, interactive workshops and events run by our NHS partners. We are excited to put all the feedback we’ve gathered into practice, and have committed to extensive engagement in the months to come, including growing an online patient community to engage with us in real-time, hosting design sessions with patients, and bringing in patients to collaborate in our research partnerships
This week we have launched a new form on the patients’ section of our website that allows people to sign up for a range of activities, from receiving a regular newsletter to taking part in design and development sessions. If you’d like to get involved please visit our 'For Patients' page.