Tag: 23andme

Friday and Saturday last week I had the privilege of attending the first Sage Congress. Hopefully this will be the first in a series of posts that cover that meeting because there is simply so much to think about and so much to just get on and do.

This is not a post about public engagement work by scientists. It is not about going to schools and giving talks. It is not about engaging with the main stream media to present your work to the great unwashed. It is about engaging with the people who will be driving your research agenda within ten years, about how the way researchers connect with society will be changed over the next decade whether they like it or not. The aim of Sage Bionetworks, the wider Sage Commons, and its constituent projects is nothing less than to change the pace at which medical research operates. An aim that was put forward seriously as a twelve month goal in one of our breakouts was to document three use cases where information from the Sage Commons had made a difference to a patient. The scientific details are perhaps less important than the delivery plan; an open plaform for laboratory and clinical data, linked to detailed models that explain that data, and ultimately to tools for clinical staff and laboratory scientists to use and crucially to contribute back to where appropriate.

As you might expect expect the meeting included scientists, technologists, policy people, funders and publishers. It also included a significant number of patient advocates and by the end of the meeting, for me at least, they were at the core the project. This might not be surprising if it were just as motivation for getting things done. Josh Sommer‘s enormously powerful talk was pitched perfectly to spur the group to action. I cannot do it justice, but will link to the video when it is available. But that was only half the story. The second half was when these same patient advocates got up at the synthesis session at the end of the meeting to say they had formed their own workstream. Their aim? To get Stephen on Oprah. Again publicity and information for “the public”, support perhaps and help in fundraising. But to focus on that is still to miss the point.

A second hand conversation was related to me in which a major agency representative had said “we will never make data public”. I have sympathy for this view. Such agencies need to protect their standards, and this includes an absolute adherence to privacy policies and validated ethical procedures. But contrast that with the talk from Anne Wojcicki talking about how 23andMe get enormous response rates on questionaires containing deeply personal questions where the aggregate information will be made public. Contrast it with the talk from Rob Epstein of Medco talking about cold calling patients to ask if they would be willing to contribute to rapid testing programmes to see whether genotyping can reduce hospitalizations caused by warfarin. And contrast it with Josh Sommer’s work with the Chordoma Foundation, Gilles Frydman‘s with ACOR and the Society for Participatory Medicine, or the many other examples at the congress; services like Patients Like Me where patients want to push data out, both because they get valuable information back for themselves and because they want to make a difference. We are rapidly moving towards a world where networks of patients might refuse to sign up for trials that don’t commit to making the data publicly available.

People like me tend to advocate getting funders to push for policy change, because they hold the pursestrings and are best placed to push through change. One thing we’ve often forgotten is that they are simply intermediaries. They are not the real funders, and they don’t provide the only form of funding. Increasingly they don’t hold the real power either. In clinical research the patients involved are directly funding your work as well as indirectly through their taxes or charitable donations. They are perhaps the biggest funders of medical research; donating their time and hard won information about their state of health. They are also the most effective advocates of that research. The engagment group at the congress didn’t stand up and say “we want to help”, they stood up to say “you need us to succeed in your aims”.

What projects like GalaxyZoo show us is that when you effectively enable an engaged portion of the wider community to contribute to your research that you can increase the pace by orders of magnitude. “The public” is not some homogeneous group of barbarians at the gate of our ivory towers. They are a diverse group, many of them interested in what researchers do; many of them passionately interested in some specific thing for a wide range of different reasons. In a world where the web enables access and communication, and enables those with common interests to find each other, people who are passionately interested in what you are doing are going to be increasingly unimpressed if avenues are unavailable for them to follow and contribute. And funders, including those ultimate funders, are going to be increasingly unimpressed if you don’t effectively tap into that resource.

The need to actively engage with, not at, the wider community as active contributors is shifting the balance of power in research, probably irrevocably. I think that is probably a good thing.