WHEN PATIENTS INVENT TO HELP THEMSELVES

It has been a long time since I blogged, but not for lack of ideas, more a deluge of concepts and ideas, combined with the ever-present day job.

Today, I read an article in the BMJ, (click here to read it yourself) and it has lit a slow fuse. The article is about the ultimate patient engagement, where individuals with a condition create solutions that revolutionise care. 

Patients really understand what it is like to live with their condition, to come to terms with how it will affect their living and their dying. Patients who have been given the opportunity to understand what their condition is, and how it will progress, patients who have time to focus on their own solutions, these are the people who are coming up with the solutions that healthcare industry had never considered. 

This is the ultimate patient engagement, where patients have found what is on offer doesn’t meet their needs, where the risks are unacceptable, or the outcomes just not good enough. The inventions covered include a new type of surgical prosthesis for aortic root problems in Marfan’s disease, a smart ileostomy bag that tells you when it needs attention, an app to self-manage repeat prescriptions and medication compliance, another IT solution that uses CBT to improve sleep, an physiotheraby device for hand rehabilitation. 

The people behind these innovations are all persistent, have really understood the issues they are trying to solve, and have been steadfast in their pursuit of developing and sharing their ideas for the good of people like themselves. For several, they comment that it has been a long, frustrating process. Tal Goldsworthy, the inventor of the aortic root device, comments ‘If I had known it was going to be this hard, I really wouldn’t have bothered’ – but never the less, he has devised a safer alternative to aortic root replacement, and 200 patients have been fitted with his device. 

What these innovaters have found in their paths to success has been a willing clinical supporter. In general, one of the key hooks is being able to show that the innovation makes for better care without adding complexity. The message – ‘if you are a doctor who believes in the technology, then two words are key: be brave’. It is so much easier not to do something, but with courage you can help technology to really grow’.

Patients have their own lives to enhance, and that is a powerful motivator, but we need to be there as clinicians to make new ideas work.