As someone whose working life gave them around forty years’ experience of working with patients and healthcare professionals in a range of therapy areas, I have long since held the view that engagement and involvement of patients in the design and delivery of their care is critical to ensuring that services effectively meet the needs of patients in a completely holistic sense. That is to say both their clinical needs and also, importantly, their experiential needs in receiving care. There seems little sense to me in health care professionals focusing only on clinical measures and outcomes if the patient is left struggling to cope with the impacts of their treatment.
Now, having recently been diagnosed with stage three prostate cancer myself, I find the reality of that situation to be being brought even more sharply into focus. Consequently, I was delighted to have the opportunity to join the panel for a recent Patients Association webinar, as not only a patient with living experience of cancer but also in my capacity as a member of the Flatiron Patient Voices Panel. Chaired by Vivienne Parry OBE, broadcaster and author, the other panel members included Melanie Shield, Senior Commercial Business Manager at Newcastle Upon Tyne Hospitals NHS Foundation Trust; Sarah Tilsed, Head of Partnerships and Involvement at the Patients Association; and Brian Kennedy, Head of Data Abstraction at Flatiron.
The webinar was attended by 63 delegates and included people from a diverse range of backgrounds, including healthcare staff, patient advocates, charity representatives and researchers.
Broadly, there was consensus amongst both the panel and the meeting attendees that data sharing is fundamental to the ongoing development of health services, however issues such as data security, inappropriate use of data and the use and influence of artificial intelligence were also aired and discussed in some detail.
The discussion though also surfaced concerns about how patients are actively engaged and involved in their care, and a) whether services (including healthcare, pharmaceutical companies, third sector providers, healthcare tech providers) are able to listen to and absorb the views of patients regarding their experience of receiving care and how it impacts on their lives and b) whether those same organisations are sufficiently agile in their thinking to move on from measures of success such as “progression free survival” of “overall survival” to begin to also give equal importance to the quality of life of those receiving care.
In addition, the conversation moved on to considering how patients are kept in the loop regarding the outcomes of their data sharing. I know from personal experience that it’s quite tempting for those gathering the data to become too engrossed in the process and to overlook the importance of ensuring that patients are made aware of the positive differences that their efforts have made. Thanks to the array of methods available for sharing outcomes, as well as the wide variety of means by which people wish to communicated with, this is a challenge, but surely not an insurmountable one where the will exists. Ongoing, long term relationships between patients and those gathering data will help in these efforts. Transparency, trust and honesty are paramount.
In summary, the meeting concluded that data sharing is absolutely critical in helping health care providers develop responsive, patient focussed services, however issues such as data security and the impact of artificial intelligence must be addressed in order to help patients have confidence and faith enough to be prepared to consent.
From a personal perspective I am hugely grateful to have had the opportunity to participate in such an interesting and important discussion, and I look forward to next time!
To find out how Flatrion Health UK works with patients and public to inform our work, learn more here.
A recording of the webinar is available here: Why prioritising patient trust increases the value of using technology and data to improve research and care.