The mission of turning data into knowledge is a key aim of DNA Digest. And the key point of this knowledge is to help patients. This sentiment is echoed by healthcare cooperatives such as Our Health Data Cooperative. As outlined on their website they want to create a transparent organisation which is owned by their members. All members anonymously share their health records in order to create “a valid comprehensive evidence-based clinical research database”. These initiatives aim to use data which already exists to the best of its ability. So much healthcare data is constantly generated and yet it is unable to be used in a way which maximises benefits to those who are most important, the patients. The promise of personalised medicine has long been hanging in the air. Research has shown that to harness the potential power of technological advances in genome sequencing, mobile health and environmental data, millions of personal health data sets have to be aggregated. Healthcare cooperatives are a way of tackling this challenge. They provide further evidence of the importance of making data available and engaging patients. The Genetics Clinic of the Future workshop generated a graphic exploring the changing role of the patient […]
The Research Data Alliance (RDA) 3rd plenary conference is being held next week and of course CEO Fiona Nielsen will be in attendance. The event is focussing on data policy and has distinguished speakers from across the globe, from Prof. Mark Ferguson to Dr Ross Wilkinson. The RDA’s mission is to enable open data sharing through building social and technical bridges. This three day event is just one part of their programme to encourage discussion and collaboration between disciplines. You can register here for the event starting Wednesday 26 March. If you can’t make it here is the Research Data Alliance’s Twitter so you can still keep up to date with proceedings. Update: Slidedeck: Links to slides and videos of the talks are available on the Programme page. Storify: There is also a curated version of the social media conversation at the event with visualisations and links to news articles about the Plenary available on the RDA Communications and Social Media page.
Next Thursday, the 27th March, DNAdigest CEO, Fiona Nielsen, has been invited to speak at The 4th Annual Eagle Symposium. The symposium is an all day event presenting challenges and solutions to those in the bioinformatics community, particularly focussing on issues relevant to data sharing. Fiona will be exploring why data sharing, the road map of future genetics, still encounters problems and how DNAdigest is overcoming these challenges to enable efficient data sharing leading to faster cures for genetic disease. The talk, ‘Privacy-preserving Data Access and Improved Data Reuse for Human Genomics Research‘, is at 2:00 pm. You are still able to register for the symposium. If are unable to attend yourself do follow @eaglegen and @DNADigest for updates throughout the day. It’s set to be a great event, with distinguished speakers including a keynote from Cameron Neylon, advocacy director of PLOS, on the role of open source and open thinking in research.
The Patient was another one of the key themes explored by the Genetics Clinic of the Future. The session was lead by Cor Oosterwijk, Ralf Sudbrak, Francesco Lescai and Maud Radstake. All have distinguished careers in healthcare policy, bioinformatics and areas relating to genetics. Their diverse expertise provided an informed and engaging starting point for the interactive session. This fourth poster explores the ways which patients can be actively involved in concrete proposals. Ideas such as establishing a DNA databank governed by patients were put forward during the workshop (run by UMC Utrecht and The Responsible Innovation Collective). DNA Digest is excited to be able to show you the full graphic (©Ruben Maalman Illustrations) investigating the changing role of the patient in the Genetics Clinic of the Future. Openness in healthcare science and access to data is obviously something which we are passionate about. Initiatives that will provide greater trust in this area are of great interest and importance. Increased patient involvement in these areas is something that could provide many benefits. Indeed the patient is ‘the main entrance’ to the Genetics Clinic of the Future. Take a look at the full poster and see what you think on the topic.
Last week DNA Digest took a trip out of the Wayra hub to hear an expert panel discuss the role and future of patenting in biomedical research. The Talkscience: Patently Obvious? talk and discussion was part of the British Library‘s Science events and was chaired by Professor Jackie Hunter (Chief Executive of the BBSRC) with guest speakers, Professor Alan Ashworth (Institute of Cancer Research), Dr Nick Bourne (Cardiff University) and Dr Berwyn Clarke (Biomedical Entrepreneur). The evening raised a number of interesting issues surrounding patenting in biomedical research but overall the opinions presented were rather moderate. It seemed that everyone was in agreement that there was no clear answer when it comes to patenting, particularly given the nature of biomedical research. Although the panel agreed that patents could hinder research developments, for example by stifling the ability to analyse our own DNA (Professor Ashworth), they could not provide an alternative method through which to fund the research and protect commercial interests. Ultimately, to scrap patents makes research involving hundreds of millions of pounds far too financially risky, particularly, as highlighted by Dr Bourne, when much of the future of the UK is based on a science or knowledge based economy. […]
On Wednesday 5th our DNA Digest CEO, Fiona Nielsen, attended a special event promoting the benefits to women of careers in Science, Technology, Engineering, Maths and Medicine. The reception, hosted by Deputy Prime Minister, Rt Hon Nick Clegg MP, was organised to encourage more women to get involved in careers related to the traditionally male dominated STEM areas. This prestigious event was held as part of National Apprenticeship Week (@Apprenticeships) . This campaign has been designed to tackle the under-representation of women in STEM careers. National Apprenticeship Week is a very appropriate time to deal with this issue as apprenticeships are increasingly popular with women. More women than men began apprenticeships in both 2011/12 and 2012/13.