Partnering with Patients: A Powerful Tool for Reducing Inequalities in Healthcare
Collaborating with patients can transform the development of medical technology, leading to more equitable healthcare
Medical technologies have the potential to transform patients’ experience of care.
Patients recognise this potential and value the technology used to support their health and well-being. Over the years, as new technologies have rolled out across the NHS, patients have welcomed a diverse range of kit and digital tech to support their health and well-being.
Last year we partnered with Roche Diagnostics UK and Ireland to ask patients about their experience of diagnostic testing. The survey found many patients believed new technology such as artificial intelligence could speed up diagnostics and reduce pressures on the NHS.
We even saw a willingness to change lifestyles if test results show the risk of developing conditions such as Alzheimer's disease in future, even where no treatment currently exist. Respondents to the survey were particularly enthusiastic about the potential to expand testing at home – as long as the NHS provided the tests and clearly explained how to use any technology.
But earlier this year, the Equity in Medical Devices: Independent Review highlighted a troubling reality: though unintentional, many medical tools and devices are designed based on data that primarily represent white, male, and able-bodied individuals. This lack of diversity in the development process leads to biased outcomes, as the article states: "The bias is then baked into the final products that are used to diagnose and treat patients, exacerbating existing health inequalities."
To address inequalities, we must embrace patient partnership in the development and assessment of medical technologies. In a recent report on technology for intimate care that we developed with Coloplast, we recommended that policymaking and assessment bodies designate ‘seats’ on committees for patients and carers and that they partner with patients with lived experience. Also important was the call for manufacturers and policy makers to have a greater understanding of the impact of a medical device on a patient’s quality of life.
Other work we’ve done with patients, makes it clear to us that as more and more health technology is introduced, patients want to be engaged in policy making and assessment of medical technology. Patients want to partner with health tech companies and those who regulate the technology to ensure devices they may one day use reflect the entirety of their needs.
For the Patients Association, patient partnership is critical to patient safety and equity. Systems that work with patients value their input and are responsive to concerns about any emerging safety problems.
The evidence shows partnership improves quality of care and outcomes – for both patient and health system. When a hospital, or clinic, or a manufacturer partner with patients and carers in the design and delivery of services or devices, it ensures those services or devices meet patients’ needs, and, therefore, achieve better results for patients. That makes partnership cost effective too – services and devices do not need to be adapted or retrofitted to serve patients affected by baked in biases that influenced their development.
As an organisation, the Patients Association strives to be a constructive partner with organisations that provide services and devices for patients. Part of our mission is to help those organisations that work with patients realise the benefits of patient partnership. It is time to recognise the tremendous value patients bring to the table when genuinely engaged.
Partnering with patients is not just a matter of safety or inclusion, it is a vital step in ensuring equity in the delivery of healthcare.
Rachel Power, Chief Executive, The Patients Association.
To discuss partnering opportunities with The Patients Association, please write to tom.o'connor@patients-association.org.uk