Ideas From Patients - how patient-led innovation could work

by David Gilbert

October 20, 2014

The Future Patient Manifesto (my previous blog) outlined ten things that could, should or will happen in the future as patients become partners for change in healthcare. One of these was that patients would become innovators and entrepreneurs. This sounds very grand. But it isn’t really. It’s about finding ways to allow patients to bring ideas to the table, and working with them to help make those ideas real.

A poet once described the dawning of a poem as a fragile moment.  She said that carrying the first idea, words, or line, onto the page is like carrying a saucer of milk. We need to be careful not to spill it, or let the saucer crash to the ground.

Patients have lots of ideas for improvement. But those moments when we do can be fragile or fleeting. I once thought it would be a good idea for nurses or healthcare assistants to close the window above my dying mum’s bed, as she looked freezing. When my dad had cancer, we asked staff to stop letting the doors bang closed as this shocked him out of his snatched moments of sleep. These are ideas that could easily be put into practice and become part of routine ‘culture’.

But even small ideas can get lost. After a hip replacement, my mum was in a community hospital, and said she hated the pianist who came on Fridays as he only played music hall favourites. I was about to go and ask if he would extend his repertoire to a bit of Mozart, but she grabbed me by the arm and told me to sit down. She was afraid she would be singled out as disturbing the routine. At the nursing home later on, she wanted the breakfast menu to be changed and had some good ideas about the seasonal fruit available. But the feedback form had to be slipped under the kitchen door, and would be read by the irritable chef, so she rated her satisfaction as high, and didn't fill out the 'free text' box.

As a mental health service user, I often wondered why the psychiatric ward had to be locked up at 8.00, as the anxiety was already high, the sleepless nights were long and increasing the pressure cooker atmosphere seemed counter-productive. But I didn’t dare to voice my opinion, nor had I any trust in staff to ‘implement’ any alternative ideas, such as arranging evening walks.

Instead of picking up on the bubbling ideas all around, and within, patients get to rate their experience (lucky them) and to fill in questionnaires. These are fed up the chain to managers who will improve things for those back down at the bottom of the chain. I wonder how many great ideas are lost in the bureaucratic engagement many saucers crash to the ground?

Ideas from patients can also be about deep system change. Patients as partners in change projects could contribute so much. One patient on a diabetes improvement project persuaded GPs that flexible prescribing guidelines were a good idea, another held out for better out-of-hours services, another for more accessible out-patient clinics for people from Asian communities. But patients were not entrusted to help carry these ideas to fruition, nor were they on the committees that decided which provider got to run the intermediate diabetes care service. Crash!

Having patients in the room at the beginning of an innovation process, sparking the energy for ideas based on ‘what if…’ is only the start. They can continue to ask questions about whether all the best ideas have been found, whether anyone is missing from being part of the solution. Some patients go further to become real entrepreneurs, and have the energy and will to take ideas all the way, working with professionals as partners in implementing change. Others would love it if their ideas were taken up by others. It all depends on who we are, our circumstances and what support and opportunities there are. Still too few I'm afraid.

Wouldn’t it be fascinating to set up an ‘ideas from patients’ pool, where staff and patients could work together to identify the best ideas and carry them forward together. Pie in the sky?

I once worked with a fabulous cardiac rehab nursing team that got together on a Friday and asked each other, ‘what one thing have we learned from patients this week?’ And ‘what one thing could we do better next week?’ We were about to go into the next phase and have a few patients come to those meetings and my fantasy was to get them to help design and deliver some of the ideas. But the Director of Nursing said that our idea was counter to the Engagement Strategy and objected that patients would be ‘unrepresentative’. Now they run focus groups, that report to an engagement sub-committee that reports to a patient experience board that reports to... crash! There goes that milk all over the floor again.

However, what if every Friday, you and your colleagues, staff and patients, met up to identify one or two things they could do differently. And worked quietly together to change things. Let’s carry that saucer of milk gently.

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4 comments on “Ideas From Patients - how patient-led innovation could work”

  1. The "slough of representativeness" is the enemy of listening to patients and learning from individual experiences. Too many in healthcare are mired in it, so they don't see past the "anecdote" to the potential innovation.

  2. David, Thank you for sharing your thoughts and experiences. The joy of finding a problem and connecting it to a different solution than the conventional would seem to be a sign of a flexible mind in a person who has had to work at things, find work-arounds in order to progress on a difficult journey. Recognition of the beauty of that light-bulb moment can attract like minds, and raise unkind feelings in those whose minds are ruled by regulations and tradition. One ability of a patient leader then is to recognise the idea(s), who thinks along those same lines, and keep them all alive - through planning, encouraged participation - the difficult iterative stuff, the data, pilot study etc. The idea need not be momentous as you point out - as long as a person speaking or writing is given the assurance that the idea is cherished, cared for on its journey to 'upper levels', defended and something positive will happen. And that the person need not be identified. The role of the patient leader is thus indispensable.

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