Could every patient become an agent for change?

Our bodies generate data 24 hours a day, 7 days a week. It's typically only captured when we interact with the health & social care system, i.e. at the doctor's office or hospital.

Given how rapidly technology is evolving, we are looking at a possible future, where we may be able to capture data from our bodies 24/7. We might be able to learn so much more about the state of our bodies (and minds), not only when we are sick, but also when we are well. From a patient's perspective, sounds potentially useful, right? Provided we don't all have to train up as statisticians to make sense of these data. 

I spoke at an event in April hosted by the Connected Digital Economy Catapult about how in 5 years time, the data we collect about ourselves, may be more powerful than the data the system collects about us. You can see the highlights of the panel discussion in the video.

Kathleen Frisbee, an executive at the Veterans Administration in the USA, has recently stated that "patient generated data is going to be the thing that really transforms healthcare". 

Not everyone is as optimistic. Many in the medical profession have doubts about the accuracy & clinical value of data generated by the current crop of wearable technology & health apps. They do indeed have a point. After all, a doctor often has to work with an electronic health record (EHR), which records the medical history for patient, i.e. when they were diagnosed, treated as well as recording lab test results and free text notes from the doctor. There are standards for those data, such as clinical coding systems like ICD9/ICD10 that are used to classify diseases.

Perhaps much of the data that patients might generate using new technologies in the future will have limited or no clinical value according to the design of the EHR? The healthcare system is built upon the biomedical model, as Dr Pritpal S Tamber explains in his recent post where he discusses the future of health. What if I capture data about my health that is meaningful to me and my life, but the system either dismisses that data or cannot integrate it with the EHR? 

A 7 year old girl in Singapore came up with the idea for an app that helps parents record how much time they spend with their children. Perhaps how much time a parent spends with their children each day is the most valuable measure of their health for them? Patients who don't take medication they've been prescribed is a huge issue. What if patient generated data tells us that some patients don't get their repeat prescription because the queue at the pharmacy is simply too long?

Susannah Fox, an amazing thinker, in her recent post, says "Patients and caregivers have knowledge that is worthy of being enshrined and shared. What would a learning health system look like if it honored all participants’ intelligence?"

It makes me wonder whether the modern healthcare system is fundamentally flawed due to the lens through which it views the people who it's supposed to serve?

Does the system really want to change?

When it comes to the system, the NHS, I've had little success in engaging with it, even when I ran Health 2.0 London. It's been frustrating, as I want to learn more about the system's challenges, and how my ideas might be able to help. Last November, Pascal Lardier from Health 2.0, wrote about the experiences of entrepreneurs who found it difficult to work with the NHS. 

I suspect things are changing. Why do I say this? I've been invited to the HSJ Innovation Summit, which takes place this week. Their website asks the question, "Is it possible for a 20th Century creation to still be innovative in a 21st Century world?" 

I have also been invited to be part of a panel next week judging applications for the Quality in General Practice Innovation Fund at Tower Hamlets Clinical Commissioning Group. 

Many of my peers tell me to stay clear of the NHS, citing their own negative experiences. As an eternal optimist, I want to believe that as a system, the NHS really does want to change. That's why I've accepted both invitations. I'll be writing a blog post about my experience of both events. 

The key to a truly patient centred NHS?

Whilst the majority of patients I speak to are very satisfied with the NHS, I do speak with some who have felt frustrated at how they feel powerless when they feel they have been let down by the system. We hear much talk about patient centred care, but a system that lives and breathes those words every second of every day is still not with us. 

We can make patient centred care a reality, and our data is going to be key to that transformation. Once the data we collect as patients becomes more valuable than the data collected on us by the system, that's the tipping point. Provided we own and control our own health data, we can finally hold the system to account. "More and more people are getting less and less happy about simply surrendering information and getting nothing in return", says Patrick James, in this BBC article on Big Data. He also believes that "Increasingly, consumers and customers will attempt to hold back their data".

Interestingly, the Technology Manifesto published this month by Policy Exchange, puts forward that government policy should allow citizens to control how their personal data in public services are used. In the manifesto, using EHRs as example, this is what UK citizens should be able to do, "They should be able to manually assign access rights to the general practitioners and doctors of their choosing".

Does this mean a new era of solidarity for patients, not just in the UK, but globally? If patients are not being treated fairly, could groups of patients withdraw access to the data they collect 24/7 about their bodies, until the government, health insurer or pharmaceutical company takes action? Are their insights about population health that are waiting to discovered if we can marry clinical EHR data with data patients generate themselves? Will we be overwhelmed by all this data about us streaming 24/7? Where will all this patient generated data reside? How can we keep it private and secure? So many questions, and also, so many possibilities. 

[Disclosure: I have no commercial ties with the individuals and organisations mentioned in this post]

Enter your email address to get notified by email every time I publish a new post:

Delivered by FeedBurner