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PATIENTS AND THEIR CAREGIVERS AS INNOVATORS

by Maneesh Juneja

I've been conducting research for a while now on how patients and their families have innovated themselves. They decided not to wait for the system to act, but acted themselves. One leading example is the Open Artificial Pancreas System project, and they even use the hashtag, ##WeAreNotWaiting. I was inspired to write this post today for two reasons. 

  1. I delivered a keynote at the MISK Hackathon in London recently to innovators in both London & Riyadh reminding them that innovation can come from anyone anywhere on Earth.
  2. post by the World Economic Forum about an Tal Golesworthy, an engineer with a life threatening heart condition who fixed it himself. 

I thought this line in the WEF article was particular fascinating, as it conveys the shock, surprise and disbelief that a patient could actually be a source of innovation, "And it flags up the likelihood that other patients with other diseases are harbouring similarly ingenious or radical ideas." I wonder how much we are missing out on in healthcare, because many of us are conditioned to think that a patient is a passive recipient of care, and not an equal who could actually out-think us. Golesworthy who is living with Marfan Syndrome, came up with a new idea for an aortic sleeve, which led to him setting up his own company. The article also then goes on to talk about a central repository of patient innovation to help diffuse these ideas, and this repository actually exists! It's called Patient Innovation and was set up over 2 years ago by the Católica Lisbon School of Business and Economics. The group have got over 1,200 submissions, and after screening by a medical team, around 50% of those submissions have been formally listed on the website. Searching the website for what patients have done by themselves is inspiring stuff. 

In the title, you'll notice that I also acknowledged that it's not just the patient who on their own innovates, but their caregivers could be part of that innovation process. Sometimes, the caregiver (parent, family member or someone else) might have a better perspective on what's needed than the patient themselves. The project leader for the Patient Innovation repository, Pedro Oliveira, has also published a paper in 2015, exploring innovation by patients with rare diseases and chronic needs, and I share one of the stories he included in his paper. 

"Consider the case of a mother who takes care of her son, an Angelman syndrome patient. Angelman syndrome involves ataxia, inability to walk, move or balance well. The mother experimented with many strategies, recommended by the doctors, therapists, or found elsewhere, but obtained little gain for her child. By chance, at a neighbor’s child’s birthday party, she noticed her son excitedly jumping for strings to catch a floating helium-filled balloon. This gave her an idea and she experimented at home by filling a room with floating balloons. She found her child began jumping and reaching for the balloons for extended periods of time, amused by the challenge. The mother also added bands to support the knees and keep the child in an upright position. The result was significant improvement in her child’s physical abilities. Other parents to whom she described the solution also tried the balloons strategy and had positive results. This was valued as a novel solution by the medical evaluators."

So many of us think that innovation in today's modern world has to start with an app, a sensor or an algorithm, but the the solutions could involve far simpler technology, such as a balloon! It's critical that we are able to discriminate between our wants and needs. A patient may be led to believe they want an app, but their actual need is for something else. Or that we as innovators want to work with a particular tool or type of technology, and we ignore the need of the patient themselves. 

Oliveira concludes with a powerful statement that made me stand back and pause for a few minutes, "Our finding that 8% of rare disease patients and/or their non-professional caregivers have developed valuable, new to the world innovations to improve their own care suggests that a massive, non-commercial source of medical innovations exists." 

I want you to also pause and reflect on this conclusion. How does this make you feel? Does it make you want to change the way you and your organisation approaches medical innovation? One of the arguments against patient innovation is that it could put the patient at risk, after all, they haven't been to medical school. Is that perception by healthcare professionals of heightened risk justified? Maybe not. Oliverira also reports that, "Almost all the reported solutions were also judged by the experts to be relatively safe: out of 182, only 4 (2%) of the patients’ developments were judged to be potentially detrimental to patients’ health by the evaluators." Naturally, this is just one piece of research, and we would need to see more like this to truly understand the benefit-risk profile of patient innovations, but it's still an interesting insight. 

I feel we don't hear enough in the media about innovation coming from patients and their caregivers. Others also share this sentiment. With reference to the Patient Innovation website, in the summer of 2015, Harold J. DeMonaco, made this statement in his post reminding us that not all innovation comes from industry, "There is a symposium going on this week in Lisbon, Portugal that is honoring patient innovators, and I suspect this will totally escape the notice of US media."

I am curious why we don't hear much more about patient innovators in the media. What can be done to change that? If you're a healthcare reporter reading this post, and you haven't covered patient innovation before, I'm really interested to know why.

During my research, I've been very curious to determine what analysis has been done to understand if patients are better at innovation than others. After all, they are living with their conditions, they are subject matter experts on their daily challenges, and they have enough insights to write a PhD on 'my health challenges' if they needed to! I did find a working paper from March this year from researchers in Germany at the Hamburg University of Technology (Goeldner et al). Are patients and relatives the better innovators? The case of medical smartphone applications, is the title of their paper. Their findings are very thought provoking. For example, when they looked at ratings of apps, the ratings for apps developed by patients and healthcare professionals were higher than those apps developed by companies and independent developers. For me, the most interesting finding was apps developed by patients' relatives got the highest revenues. Think about every hackathon in healthcare you've attended, how many times were patients invited, and how many times were the relatives of patients invited? One of the limitations of the paper which the authors admit, is that it was using apps from Apple's App store. The study would need to be repeated using Google's Play store given that the majority of smartphones in the world are not iPhones. 

This hypothesis from the paper highlights for me why patients and those who care for them need to be actively included,  "We propose that patients and relatives also develop needs during their caring activities that may not yet been envisioned by medical smartphone app developers. Thus, the dual knowledge base might be a reason for the significantly superior quality of apps developed by patients and relatives compared to companies." They also make this recommendation, "Our study shows that both user types – intermediate users and end users – innovated successfully with high quality. Commercial mobile app publishers and healthcare companies should take advantage of this and should consider including patients, patents’ relatives, and healthcare professionals into their R&D process." 

If you're currently developing an app, have you remembered to invite everyone needed to ensure you develop the highest quality app with the highest chance of success? 

I'm attending a Mobile Health meetup in London next week, called "Designing with the Dementia community" - they have 2 fantastic speakers at the event, but neither of them are people living with Dementia. Perhaps the organisers have tried to find people living with Dementia (or their caregivers) to come and speak, but nobody was available on that date. I remember when I founded the Health 2.0 London Chapter, and ran monthly events, just how difficult it was to find patients to come and speak at my events. How do we communicate to patients and their caregivers that they have unique insights that are routinely missing from the innovation process, and that people are wanting to give them a chance to share those insights? Another event in London next month, is about Shaping the NHS & innovation, with a headline of 'How can we continue to put patients first?' They have 4 fantastic speakers, who are all doctors, with not a patient in sight. It reminds me of conferences I attend where people will be making lots of noise about improving physician workflow, yet at these conferences nobody ever advocates for improving patient workflow. 

In the UK, the NHS appears to making the right noises with regard to wanting to include patients and the public in the innovation process. Simon Stevens, CEO of NHS England has spoken of his desire to enable patients to play a much more central role in innovation. Simon Denegri's post reviewing Steven's speech to the NHS Confederation back in 2014 is definitely worth a read.

Despite the hopes of senior leaders, I still feel there is a very large gap between the rhetoric and reality. I talk to so many patients (and healthcare professionals) who sadly have stopped coming up with ideas to make things better because the system always says No or dismisses their idea as foolish because they are not seen as experts. Editing your website to include 'patient centred' is the easy part, but actually getting each of your staff to live and breathe those words on a daily basis is a much more difficult task. Virtually every organisation in healthcare I observe is desperate for innovation, except that they want innovation on their terms and conditions, which is often a long winded, conservative and bureaucratic process. David Gilbert's wonderful post on patient led innovation concludes with a great example of this phenomenon;

"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!"

It's not all doom and gloom, times are changing. Two UK patients, Michael Seres & Molly Watt, have each innovated in their own arenas, and created solutions to solve problems that impact people like them. I'm proud that they are both my friends, and their efforts always remind me of what's possible with sheer determination, tenacity and vision, even when all the odds are stacked against you.

Tomorrow, four events in the UK are taking place which fill me with hope. One is People Drive Digital, where the headline reads, "Our festival is a creative space for people orientated approaches to digital technologies and online social networks in health and care" and the second is a People’s Transformathon, where the headline reads, "Bringing together patients, carers, service users, volunteers and staff from across health and care systems in the UK and overseas to connect, share, and learn from one another."

The third event is called Patients First, a new conference from the  Association of Medical Research Charities (AMRC) and Association of the British Pharmaceutical Industry (ABPI), where the headlines reads, "It brings together everyone involved in delivering better outcomes for patients – from research and development to care and access to treatments – and puts patients at the heart of the discussion."

The fourth event is a Mental Health & Technology: Ideas Generation Workshop hosted by the Centre for Translational Informatics. Isn't it great to read the description of the event, "South London and Maudsley NHS Foundation Trust and Kings College London want you to join what we hope will be the first in a series of workshops, co-led by service users, that will hear and discuss your views of the mental health technology you use, want to use or wish you had so that we can partner with you in its design, development and deployment." In the FAQ covering the format of the event, the organisers state, "The event will be in an informal and relaxed, there are no wrong opinions! We want to hear your ideas and thoughts." What a refreshing contrast to the typical response you might get within an hospital environment. 

The first event is in Leeds, the second is online, and the third and fourth are both in London, and I know that the first three are using a Twitter hashtag, so you will be able to participate from anywhere in the world. What I find particularly refreshing is that the first two events start their title with the word people, not patient. 

I also noticed that the Connected Health conference next month has a session on Patients as Innovators and Partners, with a Patient Advocate, Amanda Greene, as a speaker. I'm inspired and encouraged by agents of change who work within the healthcare system, and are pushing boundaries themselves by acknowledging that patients bring valuable ideas. One of those people is Dr Keith Grimes, who was also mentoring teams at the MISK Hackathon, and the 360 video below of our conversation, shows why we need more leaders like him. The video is an excerpt from a longer 9 minute video where we even discussed how health hackathons could innovate in terms of format. Click here to view

 

As we approach 2017, I really do hope we see the pace of change speed up, when it comes to harnessing the unique contributions that patients and their caregivers can bring to the innovation process, whether it's at a grassroots community level or the design of the next big health app. More and people around the globe that were previously offline are now being connected to the internet and/or using a smartphone for the first time. How will we tap into their experiences, ideas and solutions? Whether a patient is in Riyadh, Riga or Rio, let's connect with them, and genuinely listen to them, with open hearts and open minds. 

We can also help  to create a different future by educating our youth differently, so they understand their voice matters, even if they don't have a string of letters after their name. We are going to have to have difficult conversations, where we feel uncomfortable, where we'll have to leave our egos out of those conversations. There are circumstances where patients will be leading, and the professionals will have accept that, or risk being bypassed entirely, which is not a healthy situation. Equally, there are times when we'd probably want a paternalistic healthcare system, where the healthcare professionals are seen as the leaders in charge of the situation i.e. in a medical emergency.

The dialogue on patient innovation isn't about patients vs doctors, or about assigning blame, it's about coming together to understand how we move forward. Many of us are conditioned to think and act a certain way, whether it's because of our professional training or just how society suggests we should think. Unravelling that conditioning on a local, national, international and global level is long overdue. 

What will YOU do differently to foster a culture where we have many more innovations coming from patients and their caregivers? A future where having a patient (or their advocate) keynote at an event isn't seen as something novel, but the norm. A future where the system acknowledges that on certain occasions, the patient or their caregiver could be superior at generating innovation. A future where the gap between the rhetoric and reality disappears. 

[Disclosure: I have no commercial ties with the individuals or organisations mentioned above]