26th May 2014: Startup of the week: DNA Digest
For my first 'Startup of the week' post, I caught up with UK based, Fiona Nielsen, founder of DNA Digest. On May 29th 2014, DNAdigest are organising a Wikipedia editathon in London.
[Disclosure: I have no commercial ties with DNA Digest]
1. What is DNA Digest?
Today, giving consent for your data to be used for research involves signing a consent form to allow your data to be used for research, but it holds no guarantee that your data will be used at all. Most research data today is locked up in individual projects and institutions and not used to the full extent of research impact, specifically only a tiny fraction of data is shared across and beyond individual research projects.
DNAdigest is an organisation seeking to both promote and enable efficient data sharing for genomics research in accordance with data consent for the largest possible impact for human health. Our key activities are to engage the community of researchers, clinicians and patients to prototype new mechanisms for data sharing and promote the best practices for the available tools. We do this through organising workshops and hack days bringing the people together who have the knowledge and the interest to solve the tough problems of enabling data access for research.
2. Could you explain the essence of DNA Digest, i.e it's core values?
Our mission is to incentivise and promote efficient access and sharing of genomics data for the benefit of patients.
We support the OpenScience movement and work where we can to make genomic data more accessible, make genomics data and results easily citable, and enable more reproducible results from genomics research. We value integrity of ideals and actions, i.e. "we walk the talk" by actively implementing solutions. Very importantly we respect the individual right to privacy and advocate full adherence to patient consent and data privacy laws at all times.
3. You are hosting a Wiki editathon on May 29th in London. I've heard of a hackathon, what's an editathon all about?
A wikipedia editathon is about making a coordinated effort to update wikipedia by editing and adding new entries.
In our experience there is a lot of great knowledge, projects, activities and tools for genetic data sharing around the world, but they are all very difficult to find collected information about. We would like it to be easy to find information about existing tools, projects and best practices, and a good way to do that is to document all of the above through wikipedia. By writing useful information on wikipedia we make all of that existing knowledge easily available to everyone with an interest, not just to the experts in the field. So please join us and forward the invitation. Since it is an online event, you can join in from any time zone or location. Just sign up through eventbrite and we will update you on the activities for the day:
4. What's the business model you're operating under?
DNAdigest is a registered charity and we are supported by grants and donations. For individual events we find sponsors, as an example the Wikimedia foundation and AddGene.org are supporting our upcoming editathon.
One of our projects that we are working on has great potential for supporting the work of genetic clinics, so we are spinning this out as a social enterprise (Nucleobase Ltd) so that we can raise sufficient funding to develop the software. It is not easy to raise funds for technology development as a charity, so we will run this as a separate entity that will support the work of the charity. You can stay up to date on these developments by signing up to our newsletter.
5. Why isn't anyone else doing what you're doing?
There are a number of projects and organisations around the world that have similar aims to DNAdigest. For example the projects connected to the Human Variome Project and the more recently launched Global Alliance for Genomics and Health.
Although we aim to tackle the same problem (data sharing in genomics) we take different approaches towards solutions. The Human Variome Project is focusing on how to capture annotated variant information in dedicated database nodes in every country. The Global Alliance is coordinating a research consortium with working groups focusing on different issues related to i) regulatory and ethics, ii) data storage and analysis, iii) security and iv) clinical and health data. The focus of the consortium is to develop standards that will facilitate data exchange around the world. All of the projects are facing similar difficulties when it comes to funding and the question about how to implement the solutions into existing institutions.
At DNAdigest we take a bottom-up approach, we are engaging the "people on the ground" who are dealing with this data in their daily work and the stakeholders that have an interest in the data to be shared for maximum benefit, e.g. patient groups. With our community we spread the word of best practices and encourage ideas for new mechanisms and tools that will facilitate the efficient access to data. We believe that when dealing with a problem of how to enable data collaboration it is important to bring in contributions from the people who are the stakeholders of the solution.
6. Was there one moment which compelled you to begin the journey of working on DNA Digest?
It came around as a growing feeling: I have been working with genomics data both during my time in academia and even more directly when working in clinical collaborations in industry (when working for Illumina). I knew I wanted to make a difference for patients and be part of enabling genomic medicine, so that e.g. cancer patients in the future will not have to go through a horrendous array of toxic chemo-treatment killing off both cancer and normal cells in their body, but will be able to receive targeted treatment tailored to the genetic make-up of their disease. At first I thought I was making such a difference, until I realised that it will be impossible to implement genomic medicine until reference data and raw data is made easily available for both research and diagnostics. That was the point where I thought my time would be better spent advocating for and developing tools for efficient data access and I left my previous job to start DNAdigest.
7. What have reactions to DNA Digest been? Do different people perceive it differently?
For people who do not have a background in the field, a common reaction is "has this problem not been solved already?" Many people find it hard to believe that the research community has not yet found good solutions for data access and data sharing in this age of data explosion. Especially the patient community and the general public are astonished at the realisation that "donating your data to science" does not necessarily mean that it is accessible or even made available to the researchers that could apply the data to benefit their work.
Researchers who have some knowledge of the subject acknowledge and recognise the problem from their own experience and they are most often delighted at the prospect of contributing to new solutions and sign up to participate in our events.
8. Given that Silicon Valley is the world's innovation hub, it's inspiring to see a UK startup ahead of the rest of the world. Do you see more ground breaking innovations in Digital Health coming from outside Silicon Valley?
When it comes to health, a lot of the limitations of data innovation is dependent on how and what data is available. When the healthcare system is fragmented like in the US, it will be difficult to make over-arching solutions that integrate with the healthcare system. I would expect that some of the biggest innovations will come out of countries that have well-designed and highly standardised healthcare records, like for instance Denmark and the Netherlands.
9. Two years from now, in 2016, what would success for DNA Digest look like? What are the barriers to success?
In two years time I would like to see DNAdigest groups all over Europe organising local events to promote OpenScience and good data custodianship in genomics. By 2016 I would also expect to see at least one of our current prototypes for a data discovery platform to be in active use by the genomics community, and for the social enterprise Nucleobase I think by then we will be running pilot studies of our tool for clinicians in the UK.
10. If people feel inspired by your journey, and want to do something with technology to improve Global Health, what would your words of wisdom be?
Do not stop pursuing your idea if you hear the notion of "that has been done before" because your approach may still bring innovation to the field. Be open to develop your ideas, but stick tight to your mission and vision.
Fiona Nielsen & DNA Digest are both on Twitter and click here for the DNA Digest website.