Concordat on Open Research Data developed by a UK multi-stakeholder group
Friday, 30 September 2016 10:55
This concordat will help to ensure research data gathered and generated by members of the UK research community is, wherever possible, made openly available for use by others in a manner consistent with relevant legal, ethical and regulatory frameworks and disciplinary norms, and with due regard to the costs involved.
The benefits from opening up research data for scrutiny and reuse are potentially very significant; including economic growth, increased resource efficiency, securing public support for research funding and increasing public trust in research. However, the concordat recognises that access may need to be managed in order to maintain confidentiality, protect individuals’ privacy, respect consent terms, as well as managing security or other risks.
Openness implies more than disclosure of data. All those engaged with research have a responsibility to ensure the data they gather and generate is properly managed, and made accessible, intelligible, assessable and usable by others unless there are legitimate reasons to the contrary. Access to research data therefore carries implications for cost and there will need to be trade-offs that reflect value for money and use.
Commitment to the principles set out in the concordat will help demonstrate to government, business, international partners, other researchers and the wider public that, where appropriate, they can expect to see research data made open for the benefit of all. Such commitment will also ensure the results of research are properly open to scrutiny, with the data that underlies the concepts and arguments set out in published papers made accessible for testing and validation by other researchers, reinforcing the vital principle of self-correction.
MRC - Talking patient data with parliamentarians
Friday, 30 September 2016 10:18
In 2005 the MRC worked with a number of other organisations to set up the All-Party Parliamentary Group on Medical Research (APPG) to provide a forum for parliamentarians to discuss medical research. So in July, scientists, research participants and representatives from the MRC and other research funders are venturing into Westminster to talk to parliamentarians about how vital patient data is to research.
The timing for these conversations couldn’t be better – in the previous week the Caldicott Review set out recommendations for balancing patient confidentiality with the benefits of sharing patient information. The MRC is supporting an independent taskforce that was launched in response to the review to improve awareness of how data can be used within the NHS. Improving trust in how our information is handled is a key aspect of this and one that the MRC's head of clinical ethics and data, Dr Jon Fistein, discussed in a previous MRC blog.
The APPG event showcased studies that have harnessed the vast potential of patient data to transform healthcare. For example there were representatives from the National Survey of Health and Development which celebrated its 70th birthday this year and has used health data from over 5000 people to reveal how factors like socioeconomic status are linked to disease risk and well-being.
MRC - Fighting cancer like an infection
Friday, 30 September 2016 10:03
Professors Irv Weissman and Ravi Majeti at Stanford University and Professor Paresh Vyas at the MRC Molecular Haematology Unit in Oxford, are working on an antibody from the Stanford investigators that enables the immune system to detect and kill cancer cells. They are now testing whether it’s safe and effective for use in people with blood cancer. Find out how they collaborated across the Atlantic to get public funding for a project that has led to a spin out with multiple backers and a promising clinical trial.
Revised DH contract will benefit researchers and patients
Tuesday, 27 September 2016 10:18
The Department of Health (DH) and the Health Research Authority (HRA) have been working together to review the standard DH contract for NIHR funded research. From 4th August 2016 research funded by an NIHR research programme has been able to receive payments for start-up in advance of ethical approval. This enables more rapid, efficient and streamlined set-up of research and quicker translation of research into patient benefit.
This change will enable the appointment of skilled research staff earlier in the project leading to better quality applications for HRA Approval, fewer protocol amendment applications early on in the project, and a quicker and more efficient start up process.
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