Guest blog post from Katherine Taylor, former CEO of Ovarian Cancer Action
I’ve recently had the pleasure of being a RVS steward in COVID-19 vaccination centres. My duties aren’t too taxing; I check people into the centre against an appointment list, or act as a human signpost. But it genuinely is a pleasure: the majority of people I meet are thrilled to be there; actively choosing to protect their own health and that of the collective community. These choices really are making a difference: the data is starting to show no reported COVID-19 deaths in most of the UK. Hearing that news on the radio, as I walked home after a shift, provoked an involuntary air punch, followed by an unexpected tear. Looking foolish in the street was worth it.
Working at the centres has made me think again about patient choice. It should be recognised that whilst we are all free as individuals to choose to be vaccinated or not, in reality those of us who decide not to may have our freedoms curtailed. I’m reminded that almost all our interactions with healthcare provision are set in motion by circumstances we don’t choose. At its most basic level, we go to the doctor when something isn’t right. Even the choices we make to protect our health stem from circumstances beyond our control. Eating a healthy diet, or taking exercise, for example, contribute to heart health. Sure, they make us feel good, but if eating chips whilst watching Netflix equally protected our hearts, would we be so keen on kale and working out?
We know our actions have consequences for our health but, leaving questions of preventative care aside, as patients we aren’t seeking help with our health because of situations we’ve chosen. From the beginning we feel out of control. We haven’t sought out the condition that’s come to live with us and change our way of life, whether temporarily or forever, mildly or severely. We haven’t chosen to be unwell or chosen to cede control. It’s been visited upon us.
Patients don’t choose illness and in some healthcare environments that is only the start of an experience where choices are withheld or can’t be made. This is not how the majority of us would seek to experience illness. We want to have options, to make choices, to be heard and equal partners in decision making. ‘Nothing about us without us’ was first coined by disability rights campaigners and it rings true for all patient communities.
It’s this patient advocacy that has the power to shape healthcare in its many guises and generate positive outcomes for patients and service providers alike. Treating this as an add-on, or a non-essential nice to have at the end of, for example, drug development, is an avoidable pitfall. There’s nothing wrong with asking patients to feedback about the literature that accompanies a medicine, but it’s not enough. Done well, patient engagement needs to be drilled right back to the foundations of a process. When I was Chief Executive of Ovarian Cancer Action, we were in constant dialogue with women affected by the disease and their families and supporters. We learned what women wanted from the scientific research we funded, by ensuring that patients shaped our research strategy in its development. Patients advised on protocols for trials, informed our policy work, and lent their compelling voices to awareness raising campaigns.
Medical research charities are powerful patient advocates, driving thought leadership and sharing skills and insights into harnessing this advocacy to bring positive benefits, both to patients and to the work the charities fund. It’s worth pointing out that patient advocacy is not homogenous: patients are, foremost, people, with multiple individual outlooks, requirements and values. Many commercial organisations are now also embracing the power of patient advocacy so they can understand how their services and products will be most relevant. Herein lies the virtuous circle: the most successful products are the ones that speak most eloquently to patient need. Without listening to patients, and understanding their choices, providers miss an opportunity to understand fully what that patient need is.
When we, as patients, are faced with illness that we haven’t chosen, we are hungry to build choices back into our lives. The choices open to us become more relevant and rich when healthcare options have been informed by robust patient advocacy.
—Katherine Taylor was CEO of Ovarian Cancer Action from 2015 to 2018 and is now a consultant for government affairs and patient engagement
Patient involvement creates a virtuous circle. Have you experienced this through your work? Tell us in the comments below