Medical Technology Leaders to Discuss Open Data During World Patient Safety, Science & Technology Summit

https://www.businesswire.com/news/home/20180221005514/en/Medical-Technology-Leaders-Discuss-Open-Data-World

“People are dying because of the lack of data sharing –algorithms that can warn clinicians and help them with decision making can’t be used because data from medical devices and electronic medical records have historically been walled by the manufacturers.”

"The first challenge is how to get competing MedTech companies like Philips, Medtronic, Masimo and GE to work together on interoperability? The solution is through Open Data Pledges to amass data collected by various medical devices. Data sharing is the key along with protections for patient privacy, but the prize remains patient safety. The information is there, ready for any company or entrepreneur to figure out a way to take “interoperability and with it predictive algorithms and decision support” from concept to reality."

National Cancer Control Indicators

https://ncci.canceraustralia.gov.au/ncci-framework

"Cancer Australia’s National Cancer Control Indicators (NCCI) website is a unique, dynamic national resource that brings together, for the first time, trusted national data to inform where our efforts can be best placed.

NCCI comprises a set of indicators across the continuum of cancer care, from Prevention and Screening through to Diagnosis, Treatment, Psychosocial care, Research and Outcomes. The indicators have been developed through an extensive engagement and consultation process.

NCCI forms a bridge between information and outcomes, enabling users to see interconnections and relationships across cancer control, and to monitor national trends and benchmark internationally.

Designed for policymakers, governments, cancer organisation, researchers, health professionals and consumers, the data on the website will enhance understanding, stimulate enquiry and inform future directions in cancer control, whether in research, policy or clinical care. It will also be a trustworthy, authoritative source of information for the broader community and people affected by cancer.

Through NCCI, users can choose the type and depth of information they require through interactive charts which provide a visual representation of each indicator.

Data presented on NCCI represents currently available data sourced and collated in a coordinated approach involving Australia’s key national cancer data custodians including the Australian Institute of Health and Welfare (AIHW) and the Australia Bureau of Statistics (ABS)."

Data Sharing from Clinical Trials — A Research Funder’s Perspective. New England Journal of Medicine

http://www.nejm.org/doi/full/10.1056/NEJMsb1708278

Robert Kiley, Tony Peatfield, Jennifer Hansen, and Fiona Reddington

N Engl J Med 2017; 377:1990-1992November 16, 2017DOI: 10.1056/NEJMsb1708278

"The Wellcome Trust, the Medical Research Council, Cancer Research UK, and the Bill and Melinda Gates Foundation share a common vision for maximizing the value of data that are generated through the trials we fund. We are committed to ensuring that the data from published clinical trials can be accessed by researchers so they can validate key findings, stimulate further inquiry, and ultimately deliver lifesaving results."

"As funders of medical research, we recognize the importance of the appropriate sharing of clinical-trial data for reasons of transparency, good practice, and accelerated dissemination of results to the broader community. There is now a clear consensus that the results of all clinical trials must be reported in a timely manner, as set out in a joint statement by the World Health Organization regarding public disclosure of results from clinical trials.4 In addition, all our organizations have implemented data-sharing policies requiring that the data from studies we have funded will be made available to other researchers at the time of publication. This requirement applies equally to clinical trials.

These policies, however, do not mean that such data have to be openly available for anyone to access on the Web. We fully recognize that some data — and especially clinical-trial data — may contain sensitive, personal information about research participants, and these data need to be shared in a manner that protects participants’ privacy and confidentiality and respects the terms under which they consented to take part in the study. Such an approach might include the use of managed-access procedures, whereby requests to access data are reviewed by an independent committee, and of data-access agreements that place appropriate restrictions on how the data may be used."

NIH awards to test ways to store, access, share, and compute on biomedical data in the cloud

NIH Data Commons Pilot Phase to seek best practices for developing and managing a data commons.

https://www.nih.gov/news-events/news-releases/nih-awards-test-ways-store-access-share-compute-biomedical-data-cloud 

Whose Data Are They Anyway? Can a Patient Perspective Advance the Data-Sharing Debate?

"the patients who participated in the recent Journal summit on aligning incentives for data sharing want their data shared quickly, especially to ensure that other patients know about possible side effects. But they also want some control over how the data are shared. For example, they would be more hesitant to participate if commercial or other interests were involved — for instance, if health care systems wanted to use the data to decide whether to provide care to certain groups or if drug or insurance companies had a commercial interest in them."

Charlotte J. Haug, M.D., Ph.D. N Engl J Med 2017; 376:2203-2205DOI: 10.1056/NEJMp1704485

http://www.nejm.org/doi/full/10.1056/NEJMp1704485

Pharmaceutical companies’ policies on access to trial data, results, and methods: audit study

BMJ 2017; 358 doi: https://doi.org/10.1136/bmj.j3334 (Published 26 July 2017)Cite this as: BMJ 2017;358:j3334

• Individual patient data (IPD) is the raw data collected during a clinical trial, with detailed information on each individual participant. As such it presents important opportunities for research—for example, by allowing third parties to verify trialists’ initial analyses; permitting meta-analysis of pooled IPD for more accurate point estimates of benefits; giving greater power for subgroup analyses; and allowing new hypotheses to be explored in existing data, including on abandoned products and treatments.262728 However, it also presents a risk of re-identification of pseudonymised participants. Because of this, IPD is not generally posted in public but shared through various controlled access mechanisms, as with other forms of rich electronic health record data used by epidemiologists.

"22 companies (96%) had a policy to share IPD; 14 included phase IV trials (one included trials on unlicensed medicines and off-label uses)"

Understanding patient data

https://understandingpatientdata.org.uk/

A newly set up group based at the Wellcome Trust in the UK.

"Understanding Patient Data has been set up to support better conversations about uses of health information. We think that responsible use of patient data has the potential to improve everyone’s health and deliver better care. It is important that everyone can find out how patient data is used and why, and understand more about the safeguards that are in place to protect patient confidentiality.   

Our aim is to develop tools and resources to help inform discussions and support responsible uses of data."

There are some great resources here e.g.

•  studies about how people feel about use of their data
• advice on words to use when talking about reuse of data
• identifyability demystified
• how is data kept safe