Data Sharing – P2P Foundation

Unleashing the potential of data to transform health and care

Annemarie Naylor — Mon, 31 Jul 2017 08:00:00 +0000

Future Care Capital seeks a step-change in health and care and believes that a concerted effort to unleash the potential of health and care data could significantly improve outcomes for everyone in our society.

This report explores how the United Kingdom (UK) might support data-driven research and innovation to transform health and care. It also makes plain that, to achieve this, the UK needs to blaze a trail in the development of ‘data ethics’ to proactively build trust whilst safeguarding individuals.

Full Report – Unleashing the potential of health and care data

Executive Summary – Unleashing the potential of health and care data

In brief – our key recommendations

National context: enabling responsible data sharing and building public trust

Empower the Information Commissioner’s Office to tackle data-driven exploitation and discrimination to build public trust.
Introduce new sanctions to tackle the re-identification of data subjects from anonymous data sets, where consent, legitimate interest or contract is lacking.
Invest in technologies to positively impact social care services and task the Care Quality Commission with championing the digitisation agenda, including planning for a data-driven inspection regime to improve standards.
Streamline information governance modelling for Integrated Digital Care Records to expedite data sharing at the local level across health and care organisations.
Increase investment and support for data controllers to unleash health and care data in a standard and anonymised form, where there is a value in secondary analysis by third parties.
Expand the opportunity for data subjects to contribute health and care data to integrated records and other data sharing initiatives.

Pushing the boundaries: creating a culture of data philanthropy in a digital Britain

Establish a new National Health and Care Data Donor Bank, to coordinate data from the public and help improve the alignment of research to clinical need.
The Ministers for Digital Economy and the Third Sector, working in conjunction with the Open Data Institute and NHS Digital, business and the third sector, should develop a suite of tools to stimulate ‘data philanthropy’ in the UK.
Introduce a national Government programme to pilot the development of new health and care Data Cooperatives, Data Communities and Data Collaboratives to promote a culture of data philanthropy through the demonstration of tangible health and care outcomes delivered by a range of ‘trusted vehicles’.
The Government should explore the development of a ‘gift aid’ style scheme for health and care data, encouraging individuals to make health and care data donations to better enable research and innovation.

Establishing a health and care data advantage: investing in skills, business and infrastructure

Establish data-driven business clusters for new health and care enterprises backed by Government. These clusters should also offer skills training to help prepare the future workforce for the increase in demand for data-related job opportunities.
The Government should explore the scope to introduce tax and other incentives for businesses prepared to enter into Joint Ventures with a National Health and Care Data Donor Bank to help place future services on an affordable footing.
The new Chief Data Officer and National Data Guardian should be tasked by Government with contributing to the development of a strengthened and/or dedicated ‘data privacy shield’ for health and care data, applicable to any future trade negotiations outside Europe, to safeguard the public whilst improving the UK’s competitiveness.
The Government should support the establishment of ‘Living Labs’ to encourage innovators and entrepreneurs to develop new technologies to transform health and care outcomes. A ‘Living Lab’ could comprise of private dwellings, a residential care home and/or connected streets, and would involve the deployment of technologies associated with the Internet-of-Things.

About the Authors

Annemarie Naylor MBE is the Director of Policy and Consulting at Future Care Capital. She studied Government and Sociology at the University of Essex. For a large part of her career, Annemarie has work in public policy and economic development working with local, regional and central government.

Emily Jones is a Policy and Research Officer at Future Care Capital. She studied at the London School of Economics and Political Science where she achieved a degree in Social Policy. Emily was previously a Research Assistant at the Centre for Analysis of Social Exclusion.

Acknowledgements

We are very grateful to Dr Alison Powell for her insight and comments provided on a draft of this paper as well as for writing the Foreword. The team at Anthony Collins Solicitors LLP provided valuable legal input to inform our research. The contribution of individuals on behalf of the Leeds Care Record, Dorset Care Record, Hampshire Health Record and Connected Yorkshire has also been invaluable in the production of this report.

Photo by Community Eye Health

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Je Suis #ResearchParasite

Kevin Carson — Fri, 26 Feb 2016 08:30:39 +0000

In an editorial at the New England Journal of Medicine (“Data Sharing,” Jan. 21), Dan Longo and Jeffrey Drazen have coined an interesting new term: “research parasite.” In theory, the authors say: Data sharing is beautiful. But when you get down to all the practical details, it turns out to be one of those beautiful theories that just won’t work in the real world. “The first concern is that someone not involved in the generation and collection of the data may not understand the choices made in defining the parameters.”

Of even greater concern, though, is the possibility “that a new class of research person will emerge — people who had nothing to do with the design and execution of the study but use another group’s data for their own ends, possibly stealing from the research productivity planned by the data gatherers, or even use the data to try to disprove what the original investigators had posited. There is concern among some front-line researchers that the system will be taken over by what some researchers have characterized as ‘research parasites.’”

Put in slightly less adversarial language, In other words, research parasites are people who do what they used to call “science.”

From the beginnings of Western experimental science (illustrated in legend by Galileo’s test of Aristotle’s Physics by dropping balls off the Tower of Pisa), its ethos has centered on full transparency and the free sharing of information. The Royal Society’s motto, dating back to the international scientific community of the 17th century, was “nullus in verba”: “take nobody’s word for it.”

This open-source ethos of science was described by the science fiction writer Kim Stanley Robinson in Blue Mars:

“So public, so explicit … And for any given problem in science, the people who were actually out there on the edge making progress constituted a special group, of a few hundred at most — often with a core group of synthesists and innovators that was no more than a dozen people in all the worlds — inventing a new jargon of their dialect to convey their new insights, arguing over results, suggesting new avenues of investigation, giving each other jobs in labs, meeting at conferences specially devoted to the topic — talking to each other, in all the media there were. And there in the labs and the conference bars the work went forward, as a dialogues of people who understood the issues…

And all this vast articulated structure of a culture stood out in the open sun of day, accessible to anyone who wanted to join, who was willing and able to do the work; there were no secrets, there were no closed shops…”

The international scientific community, from its beginnings, has been characterized by the free sharing of knowledge, and its open availability for testing or further development by others, without regard to national borders.

Against this backdrop, Longo and Drazen’s fear of “stealing from the research productivity planned by the data gatherers” takes on special significance. What they’re talking about is a property in knowledge, or to be more specific an exclusive right to profit from that knowledge on the part of those who own it. Corporate boundaries are the closest equivalent, in today’s global economy, to national borders. And the corporate enclosure of knowledge — of research data — is as much an abomination against the freedom of inquiry as is the classification of research by the military-industrial complex today — or as the erection of national borders against the free of knowledge would have been in Newton’s time.

There’s a popular phrase — “Steam Engine Time” — for the tendency of epochal inventions like the steam engine and the radio to be developed independently by several people at the same time. The reason is that, with all the technical prerequisites or building blocks for an invention in place, the existence of the body of social knowledge itself takes on a productive force of its own. What’s at work is what still others call the “Shoulders of Giants Effect”: The dependence of new discoveries on previous knowledge, or the fertility of ideas when they interconnect and give birth to new combinations of ideas greater than the sum of the parts.

Make no mistake: What Longo and Drazen are talking about is erecting toll-booths to impede the sharing and building upon of knowledge. It is the use of the state’s coercive authority to enforce “property” rights in knowledge, so that proprietary research institutions like government and corporate laboratories can levy tribute on the productive use of knowledge acquired within their walls. It is a death blow to the productivity of social knowledge that is at the very heart of science.

Citations to this article:

Kevin Carson, Je Suis #ResearchParasite, Augusta Free Press, 2016-02-04

Photo by Internet Archive Book Images

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