Last week a couple of us went along to Nesta’s event, The Future of People Powered Health, to hear about the latest projects that are helping to redefine the power dynamic in local communities.
The day started by laying the foundations for ‘Redesigning power in health’, no mean feat within the NHS. Sessions throughout the day were book-ended by 5-minute interludes showcasing community-based projects and technology.
The overwhelming theme throughout the day was the redistribution and rebalancing of power between healthcare professionals and patients. The idea is that neither party should feel that they must lose their power for the other to gain it, instead, the dynamic becomes more balanced with both parties on an even keel. But how do we go about putting ‘power’ back into the hands of people who feel they have none? This isn’t an easy problem to tackle and as one speaker pointed out, ‘Everyone here gets it. Who are the people who don’t? And can we invite them to the next meeting?’
It was quickly established and then reiterated throughout the day that the current HCP-patient power dynamic does not work. Patients need to feel empowered to take control of their care and supported to make decisions with their healthcare professionals. There also needs to be widespread acceptance that helping patients to do this does not result in a ‘loss of power’ for healthcare professionals, but rather a redistribution of how power flows through the healthcare system. This approach results in more knowledgeable patients who are better able to take control of their illness and participate in treatment decisions.
The feeling of powerlessness can be particularly acute in the face of serious or terminal illness, with an overwhelming feeling of no longer being in control of what is happening to you and being at the mercy of medical professionals.
In the first session of the afternoon, about end of life care, participants were asked a series of challenging questions, such as had they ever discussed with a loved one or friend what they wanted to happen when they died? Or if you had been in the situation to, had you allowed the dying person to have a conscious decision-making role in their own death? It’s not a pleasant conversation to have, but the small act of allowing someone to say what they want to happen can allow them to regain control of their care and help to rebalance the distribution of power in their final moments. It was argued that eventually these acts will be your final memories of your loved one; at the end of life ‘every moment counts’ and the power should sit with those directly impacted by the person’s death, not with a healthcare professional.
Innovation through experience was also shown to be vitally important when it comes to new technology and new ideas. Starting with the people who have ‘lived experience’ can work wonders on shaping the final outcome, ensuring that it not only gains traction within the desired target audience, but also has longevity.
Power was defined many times throughout the day but one of the best analogies was the comparison of ‘old power’ and ‘new power’ as video games. ‘Old power’ was described as finite, a commodity that is traded so that one person must have more for the other person to have less. ‘Old power’ is like Tetris, the blocks keep falling on your head until you eventually breakdown. Conversely ‘new power’ is shared, an open and transparent current that is made by many, not held by few. ‘New power’ is seen more like Minecraft, where you use the tools you have available to create and build the foundations of something bigger, working as a community to create solutions to the problems you face.
It was clear from the talks and the attendees’ comments that this rebalancing of power will happen through community-led partnerships, grassroots programmes and initiatives co-designed with patients. Projects that will re-balance the power dynamic are those that have a clear vision, are truly in touch with, and meet the needs of, their audience, are driven by passion and have support to push them forward.