Patients become citizen scientists
2016 will bring a new generation of digitally-enabled and patient-led research, says John Loder.
We are in the middle of an explosion in the amount of data that exists about the health of individuals.
This data is coming in via smartphones, wearables such as Fitbits, personal genomics and the digitisation of health records. Its volume will soon dwarf that held by universities and institutes, and I believe it will, in time, become a great engine of medical discovery. From the telescope to the MRI machine, new sources of data are often what catapults science forward.
In particular, this rich data can help us understand more clearly the huge variation in response to treatment that individuals display.
The same pill, therapy or diet will often have widely different effects from person to person. If we can understand and predict this more clearly, then we can target care where it will do most good, leading to a more effective healthcare system, as well as improving efficiency. Traditional research techniques are mainly focused on examining average responses but with this richer data we can begin to understand variation.
This new data is produced, owned and controlled by patients. So it will be accessed on their terms – as active participants rather than passive subjects. The richest opportunities will arise when patients act as citizen scientists, actively measuring and interacting, within communities where they have a powerful voice in the direction and conduct of learning.
In other words, the next generation of research will be patient-led.
The building blocks are in place. Patients are frustrated by the speed of research and often its direction. Patient associations are already extremely active research collaborators – maintaining registries, assembling biobanks, raising funds and lobbying government. They will seize the opportunity presented by digital research.
The technology is here, and improving all the time. We already have pills that broadcast a signal when they have been swallowed, cheap home ECGs, and affordable personal genomics. Many similar devices will come to market over the next few years – including the contact lens that measures blood glucose levels, as long promised by Google.
Given motive and means, all that remains is opportunity; real communities that people can join to make their data available. These have been gathering steam for some years. Dementia Citizens, Patients Like Me, Crohnology and uMotif already offer this and have tens of thousands of users. Vanguard communities such as these have shown the way, but there are many patient groups which are not involved, and are awaiting the right mix of message, functionality and community.
For these communities to work well they must be transparent about the way that people’s health data is going to be used. While there is an understandable degree of concern around the privacy of medical information, the present debate is exclusively focused on the risks. It fails to touch on the opportunity that this digital world offers us to be far more ethical.
Our “gold standard” can be more than the signing a form that is rarely read in full or comprehended. Instead we can aim for a participatory research community with a strong voice for patients. We can deliver flexible levels of security that express individuals’ own balance between contribution and protection for different types of information. And we can provide evidence that individuals really know what they are signing up for.
Communities of this kind represent one of the biggest opportunities to improve health and healthcare, and will be a huge talking point in 2016.