Round Table Table

RoundRound table table Sharing health data: good intentions are not enough Elizabeth Pisania & Carla AbouZahrb Abstract Epidemiologists and public health researchers are moving very slowly in the data sharing revolution, and agencies that maintain global health databases are reluctant to share data too. Once investments in infrastructure have been made, recycling and combining data provide access to maximum knowledge for minimal additional cost. By refusing to share data, researchers are slowing progress towards reducing illness and death and are denying a public good to taxpayers who support most of the research. Funders of public health research are beginning to call for change and developing data sharing policies. However they are not yet adequately addressing the obstacles that underpin the failure to share data. These include professional structures that reward publication of analysis but not of data, and funding streams and career paths that continue to undervalue critical data management work. Practical issues need to be sorted out too: how and where should data be stored for the long term, who will control access, and who will pay for those services? Existing metadata standards need to be extended to cope with health data. These obstacles have been known for some time; most can be overcome in the field of public health just as they have been overcome in other fields. However no institution has taken the lead in defining a work plan and carving up the tasks and the bill. In this round table paper, we suggest goals for data sharing and a work plan for reaching them, and challenge respondents to move beyond well intentioned but largely aspirational data sharing plans. الرتجمة العربية لهذه الخالصة يف نهاية النص الكامل لهذه املقالة. .Une traduction en français de ce résumé figure à la fin de l’article. Al final del artículo se facilita una traducción al español Introduction more scientific and policy insights out of data that have already been collected. As they prepare for careers in science, today’s students doubtless Routine health and service use statistics can be just as useful hear the same clichés as we did a generation ago: science advances for policy analysis as research data. Many countries are reluctant collaboratively; we reproduce and extend the work of others; we to release detailed service use data because analysis by disinter- stand on the shoulders of giants. In some fields, such as genom- ested outsiders may contradict politically acceptable interpreta- ics, these axioms are becoming true. In epidemiology and public tions. Most countries do, however, contribute aggregate statistics health, however, data sharing and collaboration remain more freely to large international databases maintained by multilateral aspirational than real. organizations, although they are not always granted free access Students embark on a career in health research in the spirit to those databases when they want to use them. Such restrictions of sharing; they want to help improve the well-being of others. on access, imposed unnecessarily by agencies wanting to protect For all the talk of collaboration, they will enter a world in which their institutional mandates, cripple the potential utility of these another axiom dominates: “publish or perish”. That system puts expensive resources. Researchers and governments are also reluc- the interests of public health researchers in direct conflict with tant to see the data they provide used and manipulated by others the interests of public health. in ways they don’t understand because secondary users (including international agencies) do not always publish their methods. Research data are desperately underused too, in part because Benefits of sharing of a critical shortage of competent data managers.5 In other fields – genetics, banking and retailing – data management is a valuable The situation was not so different in genomics less than 15 years skill. People are trained and develop careers in the field. In public ago. Then, after years of hoarding their findings in individual health research, data management is the poor cousin of analysis. laboratories and progressing at an expensive snail’s pace, in 1996 Undervalued and underfunded, inadequate data management 1 researchers agreed to share all their data openly. Now labora- undermines the rest of the scientific enterprise. One review in tories sequence during the day and post their results that same the United Kingdom of Great Britain and Northern Ireland night; other researchers can begin to stand on their shoulders found that many of the variables collected in epidemiological the very next day. As a result, genetic research is advancing faster studies were never cleaned and coded, so they could not be used 2 than any other area of biomedicine. even by the primary researchers, let alone shared.6 In complex Genomics has taught us that sharing data with other scien- population-based surveys in developing countries, data manage- tists is a way to add value without costing a lot. It allows the same ment and analysis skills are in even shorter supply, so a higher data to be used to answer new questions that may be relevant proportion of data probably goes to waste.7 far beyond the original study. And it allows for meta-analyses When we’re dealing with public health research, wasted that are free from the distortions introduced when only sum- data can translate into shorter, less healthy lives. Improving data mary results are available.3,4 We could get far more out of public management so that data can be shared is a first step to reducing health research if we followed a similar path, if we squeezed that waste. But it will not be enough. We need to change the in- a London School of Hygiene and Tropical Medicine, Keppel Street, WC1E 7HT, London, England. b Department of Health Statistics and Informatics, World Health Organization, Geneva, Switzerland. Correspondence to Elizabeth Pisani (e-mail: [email protected]). (Submitted: 18 November 2009 – Revised version received: 5 January 2009 – Accepted: 7 January 2010 ) 462 Bull World Health Organ 2010;88:462–466 | doi:10.2471/BLT.09.074393 Round table Elizabeth Pisani & Carla AbouZahr Sharing health data centives that pit the interests of individual recorded in anonymized data sets.10 Social mented editor Christine Laine at a recent researchers against the interests of public and economic sciences have also gone conference on biomedical publication.19 health, that pit institutional interests further in making the sharing of data sets There are indications that public against the more rapid advancement of easy through standard metadata, both for and foundation funders of public health knowledge and understanding. Govern- aggregate data through Statistical Data research wish to strengthen data sharing ments may hold micro-data back from and Metadata Exchange (SDMX) stan- policies, shepherding epidemiologists international organizations, but there’s dards and for individual data using Data down the road already travelled by ge- no excuse for international organizations Documentation Initiative (DDI 3.0) neticists.20–23 Many field researchers who to limit access to the aggregate data that standards. A further lesson from other have battled difficult climates, erratic governments do provide. fields: it is possible to make data widely electricity supplies, fuel shortages and It’s easier to understand why indi- available to the research community while recalcitrant local authorities will doubt- vidual researchers are reluctant to share still safeguarding integrity, through the less resent increasing pressure to “give data data they have collected. That reluctance use of standardized data use agreements away”. Some are also apprehensive that will certainly remain entrenched as long as and licences.11,12 These define who may use people looking at the data in the comfort their employers – research councils, foun- data and how, and may require secondary of some distant, well resourced office will dations and universities – regard publica- analysts to contribute both derived data spot the errors that are the inevitable tion of research papers in peer-reviewed and a record of their analytic methods by-product of research in the real world. biomedical journals as the main yardstick back to the database, so that primary and Governments are equally reluctant to of success.8 If, however, “publish [papers] other users can both verify and benefit expose their data to interpretations other or perish” were to be replaced by “publish from their work. than those published by their official stat- [data] or perish”, the picture might change The data that we collect and don’t isticians. There is a fear, too, that data may rapidly, as it did in genomics. make full use of do not come free. The be used by others not just for professional What did that experience teach us? collection of routine health statistics is but for economic gain. This is sometimes That a change in the culture of science paid for by our tax money. Most research cast as a “north–south” divide; one spectre requires the buy-in of key research teams, aiming to reduce ill-health in the develop- raised is of pharmaceutical companies yes, but that it also requires considerable ing world is also funded either from the exploiting data from developing countries and very concrete commitments from public purse or by charitable foundations. to develop products that those countries funders. The two largest funders of the It is irrational to invest so much in col- then can’t afford.24 Human Genome Project, the Wellcome lecting data and yet so little in ensuring Feelings of ownership over hard-won Trust and the National Institutes for that we make the best use of it.13 It is also data, viscerally held even by researchers Health, invested massively in the infra- ethically unsound; people who participate who support the idea of data sharing in structure needed to share data on a large in research have a right to expect that the principle, are understandable.

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