Historically, patients have tended to be at the end of a linear process in healthcare: scientists discovered; industry developed; doctors prescribed, and patients did as they were told (whether it worked or not).
In recent years the emphasis has changed, especially in the context of severe and chronic diseases where there is no ‘magic bullet’ cure, to a rhetoric of partnership, and of ‘listening to the patient voice’. While this shift in emphasis is entirely to be welcomed, in practice there is a long way to go before patients can be really confident that the added value they bring to the processes for developing novel therapies, as well as designing and delivering timely and user-friendly services, will be recognised and acted upon across the board.
Some patient organisations are relatively large, able to employ professional staff to support their work, and to develop processes to engage with their members, understand what it important to them, and use this to advocate for change. However, the majority of patient support groups, especially those for people with rare diseases, are small. Their membership is made up of those affected by the condition and/or those caring for them, and often they lack the resources to engage with other stakeholders at the level needed to make a real difference.
Despite the rhetoric, patient engagement is still too often an afterthought, coming at the end of a process which has already been agreed – “You do agree with us, don’t you?”
The work of groups such as Genetic Alliance UK can make a real difference to situations like this by creating the critical mass to make an impact, and by sharing understanding of how decisions are made so that condition-specific support groups can make their voices heard more effectively throughout the process from bright idea to provision to patients. Patients have views on all aspects, from priority setting through planning to performance, and listening to these will add value in a variety of different and important ways.
Engaging with patients and families will:
Given the pressures that healthcare systems around the world are under, engagement with patients and families has the potential to contribute significantly to the preservation of the fundamental solidarity underpinning the NHS’, and many other nations’, health care provision.
Thanks to scientific progress we can hope for many more opportunities to intervene in formerly untreatable conditions. At the same time, demographic change is piling on the pressure as we live longer and with multiple co-morbidities, and health care systems experience growing resource constraints. Under these circumstances, squaring the circle of rising expectations, growing possibilities and downward financial pressures can be helped greatly by real and early engagement with patients and families.
Done well, such engagement will contribute significantly to re-drawing the healthcare system to ensure that provision is sustainable, equitable and able to encourage continued innovation that responds to currently unmet patient needs – and which patients are able to access quickly and fairly.
The best drug in the world is useless if it stays on the pharmacy shelf, and innovation will dry up if there is little prospect of a return on the investment required to keep the pipeline flowing.
Before rushing out to look for patients and patient groups to engage with, remember the reality of life for those with whom you wish to engage. Patients do not choose to have a life-limiting disease which may be poorly understood and for which little can be done to alter its trajectory. Given a choice, most patients would rather not have to think about the issues and would want their disease to be easily preventable, avoidable or curable. Taking the children to the beach on a sunny day or attending a multi-disciplinary clinic in a tertiary hospital at the other end of the country are not options about which there can be a free and equal value choice. So, participation by patients and families must be based on real respect for them and the input that it is hoped they can provide.
Patients and families often need practical help to engage, too. Supporting the family by thinking about childcare, minimising disruption to family life and helping with cultural or language issues can be the difference between success and failure in patient engagement.
Talk of putting the patient at the centre is great, and no-one would say this is a bad idea. However, in the centre you can end up trying to face in all directions at once and not know which way to turn first as stakeholders circle round.
To my mind, a better analogy is that of the dance troupe or an orchestra, where each member has a clear role that is understood by the other members, and all work together to produce an outcome which is harmonious and where the sum is greater than the parts.
To quote deaf-blind American activist and author, Helen Keller, “Alone we can do so little, together we can do so much.”
I look forward to the day when the design of services and support, the development of therapies for unmet needs, and the determination of quality and value is truly based on listening to the patient voice – and the mechanisms to enable this to happen are comprehensively and robustly in place everywhere.
For almost 25 years Alastair Kent was the executive director of Genetic Alliance UK (GA-UK), the national alliance of over 200 patients support organisations helping those with rare and genetic disorders. He founded and chaired Rare Disease UK, the campaign managed by GA-UK, until January 2018.
In April 2017 he stepped back from this to take on a new role of Ambassador for the organisation, promoting awareness of the needs and expectations of all those affected by, or at risk from, rare and genetic conditions.
He retires from Genetic Alliance UK at the end of April 2018 but will remain active in the field as an independent consultant.
Alastair was made OBE for services to healthcare in 2011. In 2017 he became a Fellow of the Royal Society of Arts for his work on behalf of genetic patients and families.
In 2018 he received a lifetime achievement award from EURORDIS, the European organisation for rare diseases.