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."

NSW government open data

"The NSW government has overhauled its open data infrastructure with the imminent launch of a new data marketplace to be developed and managed on Data Republic’s Senate platform."

http://www.innovationaus.com/2017/11/NSW-turns-tap-on-open-data

Conference catch-up: data integration in the public sector

https://www.themandarin.com.au/85723-conference-catch-up-data-integration-in-the-public-sector/

"Discussions at Friday’s short conference about “unlocking the value of Australia’s public data” centred on the potential for integrated data to help solve complex policy problems, as well as the challenges this presents government agencies, companies and other organisations.

Public servants and other interested parties flocked to the event, which was jointly hosted by the Australian Bureau of Statistics and the Institute of Public Administration Australia (ACT Division), and anyone who didn’t make it can now view the whole event on four separate videos at their leisure."

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 

ABS boss on data integration: ‘Why aren’t we talking about this in the community?’

https://www.themandarin.com.au/85667-abs-boss-on-data-integration-why-arent-we-talking-about-this-in-the-community/

"The head of the Australian Bureau of Statistics says researchers and others who want to make the most of publicly owned data need to do more to build public trust and explain the value of their work in the wider community, not just in their own scientific and tech-savvy circles."

What Constitutes Peer Review of Data?

What Constitutes Peer Review of Data? A Survey of Peer Review Guidelines

Scholarly Kitchen blog post by Todd A. Carpenter

 https://scholarlykitchen.sspnet.org/2017/04/11/what-constitutes-peer-review-research-data

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