This week October 21 – 27, 2019 is Open Access week, an international event celebrating and promoting openness in research.
In keeping with this year’s theme, Open for Whom? Equity in Open Knowledge, this blogpost reflects on the public benefits of open data, the current challenges and opportunities.
We’re using the Library’s twitter account (@sgullibrary) to retweet interesting articles and blogpost all this week.
Open for whom?
This week the international research community is celebrating Open Access Week by reflecting on equity in open knowledge; enabling inclusive and diverse conversations on a single question: “open for whom”? Today’s blog post focuses specifically on open research data. UK Research and Innovation (UKRI) state in their Common Principles on Data Policy that:
Publicly funded research data are a public good, produced in the public interest, which should be made openly available with as few restrictions as possible in a timely and responsible manner.
But who exactly does open research data benefit? We often speak about the benefits of open data to research and innovation:
- enabling transparency
- promoting reproducibility
- boosting opportunities for collaboration
- enhancing opportunities for innovation
- reducing inefficiencies in research
The public ultimately benefit from open research data but are often treated as beneficiaries and not active, engaged partners.
This year’s theme asked me to challenge an assumption that open research data are for (and used primarily by) scientific/technical specialists working “in the public interest”, rather than the public themselves. A noble endeavour, I thought. So off I set…
Who is the public?
At the very start, I faced a conundrum – who exactly is the public? The National Co-ordinating Centre for Public Engagement (NCCPE) helped ‘define the territory’. The short answer is everyone. Anyone can be a part of the range of groups that make up the public.
Non-governmental organisations, social enterprises, health and well-being agencies, local authorities, strategic bodies and community, cultural and special interest groups all comprise members of the public with an interest in accessing data to inform decisions that will benefit their group.
Releasing raw data in ways that make the data easy to find, access, understand and reuse helps maximise the potential benefits of research data across the social spectrum. It should be easy to discover what research data are available and how that data can be accessed. When released, data should be in open formats so that anyone can be able to access it, not just a select or privileged few possessing expensive, proprietary software. Data should also be shared with sufficient information about how it was created, how it should be understood and how to reuse it meaningfully and responsibly. Finally, data should always be shared under licences which tell people what they can do with it. Called FAIR data, these principles of data management and sharing enable maximum reuse of research data.
It’s here that a measured voice within in me started whispering… and I listened carefully.
Is this really enough? This still has the potential to get messy. Very messy. Especially if we’re talking about health and medical data derived from human beings, which can be sensitive and which we have taken responsibility for protecting.
In the fallout of various data scandals, including scandals about the data used to train artificial intelligence, organisations everywhere are scrambling to restore public trust in the way we handle and use data. Part of restoring that trust is in the transparency offered by open data. Another aspect of restoring trust is in safeguarding the data that people provide us with and using that data responsibly, in ways individuals have consented to.
This tension between openness and our professional responsibilities is recognised in the UKRI’s data policy as well:
UKRI recognises that there are legal, ethical and commercial constraints on release of research data. To ensure that the research process is not damaged by inappropriate release of data, research organisation policies and practices should ensure that these are considered at all stages in the research process.
This is a tension we are constantly negotiating given the kinds of data that we handle at St George’s.
A new field of applied ethics, called data ethics, gives us a useful framework for exploring and responding to legal and moral issues related to data collection, processing, sharing and reusing. The Open Data Institute has developed the Data Ethics Canvas to help organisations identify and manage ethical issues related to data. The UK Department of Digital, Culture, Media and Sport also provides a Data Ethics Framework to guide the use of data in the public sector.
Being responsible in our data sharing means that a large amount of data produced from human participants are only available on request from other researchers. This takes me right back to where I started, though with the caveat that it might be particularly relevant for health and medical research: an assumption that open research data are for (and used primarily by) scientific/technical specialists working “in the public interest”, rather than the public themselves.
But maybe there’s a middle ground for health and medical data derived from human participants? Maybe there are possibilities for us to create meaningful and lasting partnerships with ‘the public’ to realise the public benefits of data? The UK Biobank engages very closely with their participants, but they are still participants. I wonder if there are examples out there of projects where participants are also decision-makers about their data. Or examples of projects that have formed collaborations with civil society and/or public sector groups to realise the greater benefits of data. It would be nice to see examples of initiatives like these to use as a springboard for wider conversation.
Michelle Harricharan, Research Data Support Manager (firstname.lastname@example.org)
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