Beyond open data: realising the health benefits of sharing dataBMJ 2016; 355 doi: https://doi.org/10.1136/bmj.i5295 (Published 10 October 2016) Cite this as: BMJ 2016;355:i5295
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Further to our article above, I'd like to alert readers with an interest in the challenges of sharing patient-level data ethically, equitably and usefully to a detailed case study of the WorldWide Antimalarial Resistance Network, one of the collaborations referred to in Box 1 of "Beyond open data: realising the health benefits of sharing data".
The case study was commissioned by the Wellcome Trust, on behalf of the Public Health Research Data Forum, which groups major funders of clinical and public health research, many with a focus on research in low and middle income countries. It is thus written with their information needs in mind, but may also contain lessons of interest to research groups grappling with the practicalities of sharing data collected in low income settings.
The full report can be downloaded from https://figshare.com/articles/Learning_from_the_pioneers_lessons_about_d...
Competing interests: No competing interests
Re: Beyond open data: realising the health benefits of sharing data---- Timely and useful to researchers in Public Health
We read with interest the above discussion and would like readers to see the uploaded article from NEJM (Strengthening Research through Data Sharing. Elizabeth Warren, J.D. N Engl J Med 2016; 375:401-403 August 4, 2016). This is self explanatory and the sixteen comments generated reflects the unanimity in thought of benefits of data sharing. The data is meant for good of the public, and clinical trials by and large aim at finding correct methods for improving patient responses within the safe ambit of healthcare scenario in the country. The sharing of data will open up avenues for further improvement, innovations and future lessons for conducting trials.
Competing interests: No competing interests
It is welcomed to see this article on the benefits of data sharing when at the same time there is an article on pulse  considering the return of a program to share GP data, considered there as a "Zombie scheme". As a practising clinician, I consider I have a duty to share information, not only for the day to day management of my patients -and pleased to have advanced and progressing data sharing with secondary care (Leeds care Records ), but also for research, for the benefit of not just the small number of patients I serve, but for the wider community, facilitating research, improving outcomes by understanding better what happens in the real world with medications, with their interactions, with effects on other co-morbidities to cite just some examples.
Obviously, there is a considerable difference between identifiable data we use for patient care and anonymised data used for other purposes, like research. It is clear there are too many sources of information and there is little interoperability among them. One could argue that even for clinical practice having information on the information collected by researchers on a patient could have benefit for my daily care, as current practice is to simply inform that a patient is participating, and that letter, scanned and filed is likely to be missed if there are issues going with that patient, as they do not always offer that information on consultation. But then, are we GPs making it clear for future reference that the patient is taking those drugs and that we need to monitor some additional symptoms? I do not think so.
If all patients in United Kingdom have an electronic record via their registered GP, why is it not used as a primary data repository? Why do researchers need different software warehouses not linked to the vast information already collected for those consented for the trial patients?
Probably the first obstacle is actually not technology, but public and clinician concerns. Nobody can argue against the benefits of data sharing. Regarding the public, I consider the last review by Dame Caldicott, National Data Guardian (2016), offers enough reassurance. Regarding clinicians, probably we need to explore in more detail why there are some very vocal ones against making these benefits a reality. Creating some controversy I could argue it could be not about the process itself but hidden concerns about the quality of the data held. I know in our practice we put a lot of effort to maintain data quality standards, but I accept more should be done and unfortunately there is no enough time for it. And for future research it is paramount the data quality held in general practice records is improved.
1. Matthews-King A "GP data-sharing scheme rises from the dead", Pulse (October 2016) page 30 (Also retrieved on 16th of October 2016 at http://www.pulsetoday.co.uk/your-practice/practice-topics/it/gp-data-sha...
2. Leeds Care Records. Retrieved from https://www.leedscarerecord.org on 16th of October 2016.
3. National Data Guardian (2016). Data security standards for health and social care. Retrieved from https://www.gov.uk/government/uploads/system/uploads/attachment_data/fil... on 16th of October 2016.
Competing interests: I have been involved as clinical lead for IT for Leeds West CCG on care.data program and on Leeds care Records project