We’re all citizen scientists now: making people powered health a reality
Shop online? Watch movies online? Book your flights online? Keep in touch with friends online? Manage your health online? If you’re like most people, you’ll have answered ‘yes’ to four of those questions – but probably not to the last – and arguably most important one. But change is happening, that will soon make digital health management normal, expected and demanded by each of us as citizens and patients.
During the last three years at uMotif, we’ve been working with incredible clinicians, academics, patients and patient groups across 14 clinical conditions in the UK, USA and Australia. We’ve been building, testing and refining our platform for digital health management. This work has proven to us that there is huge demand and potential for digital technology to empower and engage people in self-management and enhancement of their care.
As with any other industries, there are significant improvements when services are centred around people; where we have the tools to do more ourselves. This digitisation of healthcare is happening right now. No longer are nurses, doctors, carers and – most importantly – patients, happy with the status quo. A status quo when too many patients are discharged with too little information or support. At best, being provided with an impersonal photocopied information leaflet, and in most cases given no tools to support health management, and recovery, or enhance follow-up appointments.
The exciting news is that a bright new digitally-powered future is coming. A future where technology enhances human-to-human interactions. But we want to make this happen sooner; to improve people’s quality of life and treatment outcomes – giving people a better experience of care, and making health systems more efficient. We believe that to make this happen quicker, we need to engage each of us – the public - harnessing our collective desire for better healthcare and opportunities to self-manage.
So with backing from the Nesta and Cabinet Office’s Centre for Social Action Innovation Fund, we’ve launched a public-facing citizen science project – 100 for Parkinson’s.
The project – open to all adults with a smartphone – engages people in self-management of their health. For 100 days, participants track their health using the uMotif Apple or Android smartphone app, and donate their data for research. We hope you will sign up too!
This type of population-level, citizen-science approach relies on three core principles that are key to encourage and drive the shift in healthcare:
- Clear benefit for the individual taking part.
- The opportunity to contribute to something larger than as an individual.
- The data contributed is made to work as hard as possible.
Firstly, there has to be a clear ‘what’s in it for me?’ proposition for each person. People need to understand that there is value for them in taking greater control and ownership of their health. So by taking part in 100 for Parkinson’s, each of us will get a better understanding of what’s affecting our health – by tracking what’s important to us.
There needs to be a clear value proposition to the individual, and we’re already seeing some great examples of how people are improving their quality of life by taking part:
“I would say; give it a go, it’s not difficult and it really makes you think about your day. You can look at the data and see when your best times are and make the most of it. I think you have to look at what you can do, rather than what you can’t and challenge yourself.”
Many people have also told us that they want to be part of something big, and make an impact on research. People are motivated and enthused by the opportunity to take part in large-scale projects; being part of a significant new movement; and helping with groundbreaking research.
We’ve seen how people want to get involved in research and so-called ‘citizen science’ projects including Zooniverse, the Apple ResearchKit studies in the USA (mPower, My Heart Counts) and also our sister project in the UK focusing on arthritis and the weather: Cloudy with a Chance of Pain.
These studies and projects have quickly recruited thousands of people, contributing millions of datapoints. This level of data and participation is unheard of in health engagement or research.
Our strong belief is that people are more motivated and excited when they know they are part of something large, global and forward-looking. So we decided early on that 100 for Parkinson’s should be a UK-led but global project, open to as many people as possible. Our aspiration is to recruit over 20,000 in the UK and up to 100,000 globally to take part – each tracking for 100 days.
These ten million person-days are expected generate over 100 million person-generated symptom and health data points!
Certainly big and exciting!
Finally, the third principle is that the data people enter and capture should work as hard as possible to generate meaningful impact. That means that the data should available for free for academic researchers across the world to use, build on and combine with other data sets, to generate new knowledge.
The 100 data set will be anonymised and made available via the Sage Bionetworks ‘Synapse’ platform to accredited researchers, who will have to submit a research request to a Data Access Committee, chaired by the Cure Parkinson’s Trust. In this way we can ensure that the data is used to its maximum potential to unlock new knowledge and deliver positive impacts for patient care, now and long into the future.
So what new knowledge might we gain?
The dataset will include people with and without Parkinson’s, and with a range of other health conditions. From this rich dataset we could gain a better understanding of how daily life affects how well we feel we sleep each night; and also how poor sleep quality affects us the next day.
The sorts of questions that most people have, but for the first time could be answered through citizen science and large data sets. For those with Parkinson’s, there could be information around how people’s cognitive and motor functions are affected by their daily habits and adherence to their medication regime.
Again, these are the sorts of questions that people have been pondering for decades. Now we can go from trying to answer those questions alone, to harnessing the power of smartphones at a population level to answer them together.
Finally, we’ll learn more about how we can use the advances in technology to unlock this new knowledge. How a project should be structured to appeal to the people taking part and how we ensure that they remain engaged and feel a sense of ownership about the problem that they‘re looking to solve.
So change is happening, helping healthcare to evolve and challenging the public to do more themselves to improve health. We hope that you’ll register and take part in 100 for Parkinson’s; learning more about your health, being part of a global movement, and making a difference for research.
Welcome on board! www.100forParkinsons.com/takepart