Anonymity and Research: Health Data and Biospecimen Law in Australia

In Anonymity and Research, D’Arcy Holman explains and critically examines health data and biospecimen law in Australia relevant to health research, including the development of data linkage systems, biobanks and other initiatives in integrated health information.

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The first proof of concept study of the International Health Data Linkage Network is pooling aggregated result data from participating centres in the countries of Australia, Canada, England, Wales and Scotland to show whether vasectomy reversal protects against prostate cancer in vasectomised men.

While rather an unusual research topic, IHDLN members chose to replicate a WA study (1) performed in 2000 in which the findings were deemed inconclusive and the authors of the study called for other international data linkage centres to pool data to perform a large international meta-analysis.

Linked mortality, hospital separation and cancer data is to be accessed locally by each country’s research team, including: the number of men who had a first-time vasectomy in the time period; the number of men who subsequently had a reversal (a time-dependent exposure variable); the number of incident cases of prostate cancer following vasectomy and the time intervals.

Results to be pooled in a meta-analysis will include the age-adjusted rate ratio of prostate cancer in vasectomised men, who did and did not have a subsequent reversal. Survival time in those without cancer will be censored at death or the end of the study period. This project will identify the methodological challenges faced when aggregating international data.

This collaborative study by potentially seven health data linkage research groups (Manitoba Centre for Health Policy, Canada; Centre for Health Services and Policy Research, Canada; Oxford Record Linkage Study, UK; Information Services Division of NHS Scotland, UK; The University of Western Australia & Curtin University, Australia; Institute of Clinical Evaluative Sciences, Canada; and Swansea University, UK) is the first of its kind in the world, and will seek to demonstrate the utility of international cooperation fostered through the International Health Data Linkage Network.

For more information please contact either Emma.Fuller@health.wa.gov.au or R.Moorin@curtin.edu.au

1. Borgmeier I, Holman CDJ. Does Vasectomy Reversal Protect against Prostate Cancer? AEP Vol. 14, No. 10 LETTER 749 November 2004 : 748–749.

Handover of IHDLN Directorship to Curtin University, Western Australia

As stated in the consensus statement of the network, the responsibility for hosting the role of director is to rotate among the members who are participants in the network for a term of two years. Expressions of interest for the role were sought in late 2010. Since inception and to this day, the network remains unfunded. As of this week, the hosting of the Directorship of the IHDLN will be handed to Professor James Semmens and Associate Professor Rachael Moorin of the Centre of Population Health Research, Curtin University.

Professor Semmens is the inaugural Chair of Population Health Research at Curtin University. He has established a reputation as a research leader for his contribution to use of record linked data to support health research. He established the Centre for Population Health Research (CPHR) in 2006 which supports eight programs of research: health informatics; patient care; health services research; injury research (interpersonal violence including sexual assault, burns and road safety); Indigenous health; ageing; genomics; and ‘information system development’. In addition to his Chair position, Professor Semmens holds many roles in data linkage at a national level. He has over 443 scientific works and has contributed to provision of research grants totalling around $33million. The significance of his work has been recognised in four prestigious awards: WA New Independent Medical Researcher Award (2002), Inaugural WA Safety and Quality in Health Care Award (2003), The Royal Australasian College of Surgeons Medal (2008), WA Spatial Excellence Award (2010) and the Asia-Pacific Spatial Excellence Award (October 2010).

Email contact: James.Semmens@curtin.edu.au

Associate Professor Moorin is the Programme Leader  of Health Services Research it the Centre for Population Health Research at Curtin University and is an adjunct Professor in the School of Population Health at the University of Western Australia (UWA). Rachael has been awarded competitive research grants as a chief investigator totalling > $5 million from State and national funding agencies in projects associated with health policy, population health, epidemiology and utilisation and outcomes of health services. Rachael has been responsible for many novel research initiatives using linked administrative health data to describe the epidemiology of health service use in various population groups; measure equity in and access to health care services and study the effect of policy on equity and access to health care services Rachael has 36 scientific publications (the majority as first author) consisting of international and national peer-reviewed journal articles and commissioned reports. Rachael has been awarded prizes at international and national level for her research including two prestigious competitive awards at the Australian and New Zealand Society of Nuclear Medicine Annual Scientific Conference in 2002. In the same year she was also awarded second place for the best published journal article by the American Society of Nuclear Medicine. Rachael is considered one of the leading authorities on using linked administrative health data in applied health and economic research and is currently supervising seven PhD students in this area.

Email contact: R.Moorin@curtin.edu.au  

I would like to thank both James and Rachael for taking on directorship of the network and dedicating their time to a worthwhile initiative. I am sure that you will hear from them in the very near future.

Having taken on the part-time role of Director of the IHDLN since December 2008, I have thoroughly enjoyed seeing the development of the network from a theoretical concept to an active network with 170+ members from around the globe. I encourage you to look at the Member Directory on the web to see who is involved and what their research interests are. The primary purpose of the IHDLN is to maintain a useful international network of linkage centres and users committed to the systematic application of data linkage to produce community benefit in the health and health-related domains. I believe this purpose has and continues to be fulfilled. The IHDLN website www.ihdln.org is a testament to this. I am currently completing a journal paper about the development of the IHDLN and I look forward to letting you know of its publication in the very near future.

 I have taken on a new role as Coordinator of the Population Health Research Network, a network which is aiming to provide researchers with access to information from administrative health data sources across all jurisdictions and sectors of Australia. Effectively the network will complete data linkage on a national level to support population-based research. For more information please have a look at http://www.phrn.org.au/

My email contact will remain the same: Emma.Fuller@health.wa.gov.au  I do hope you will keep in touch. I will continue to be involved with activities of the IHDLN, including the first proof of concept project of the IHDLN, looking at the protective effect vasectomy reversal may have for prostate cancer and of course I hope to see many of you at the International Data Linkage Conference in Perth, WA in May 2012. Blatant plug if you have not yet registered: please go to http://www.datalinkage2012.com.au/

Bear with us as contact detail changes are made to the IHDLN website in the coming weeks. However if you have any queries in the meantime, I am more than happy to answer by email or phone.

And in exciting personal news, my husband and I are expecting our second child in February 2012.

Other IHDLN News:

Reminder: Informal meeting of the IHDLN at ‘Exploiting Existing Data for Research’ conference at St Andrews University, Friday evening, September 2011

An informal gathering of IHDLN members attending the Exploiting Existing Data For Health Research 2011 conference will be held on Friday evening of the conference. Professor James Semmens will be chairing the meeting. More details will follow soon by email to members and will be posted on www.ihdln.org

Registry of International Data Linkage Projects

So far during the existence of the IHDLN, we have embarked on two international projects:

 1. The first proof of concept study is being undertaken by researchers from The University of Western Australia, Curtin University, The University of British Columbia, The Manitoba Centre for Health Policy, Oxford University and the NHS Scotland. The overall aim of the study is to perform an international meta-analysis of vasovasostomy (vasectomy reversal) and prostate cancer in vasectomised men using linked hospital morbidity, cancer registration and death records to determine if vasectomy reversal protects against prostate cancer. Data access and analysis is being self-funded by each of the participating groups.

2. An application in 2009 was put to the Economic Social Research Council to assess & document the comparability of core data sets used in data linkage research across countries & develop a data dictionary.  This grant was unsuccessful and a rebid looking at national comparative statistics with a focus on AMI by socio-economic deprivation is currently being led by researchers at St Andrews University

We would like to know of any other projects that you may be involved in that have come about due to connections you have made through the IHDLN. In no way does the IHDLN want to claim ownership, however we believe it would be beneficial to keep a registry of international data linkage projects that are in operation. Please send the Title of the Project, a small paragraph about the study and a contact name and email address to Emma.Fuller@health.wa.gov.au

Best wishes,

Emma Fuller

Friday evening, September 11th 2011, Scotland

An informal gatthering of IHDLN members attending the Exploiting Existing Data For Health Research 2011 conference will be held on Friday evening of the conference.  All members attending the conference and anyone interested in the network are welcome to attend. More details to come.

The third International Health Data Linkage Conference will be held in Perth, Western Australia 1-4 May 2012.

The University of Western Australia, the Telethon Institute for Child Health Research, Curtin University and the Department of Health Western Australia have great pleasure in inviting you to the 2012 International Data Linkage Conference (IDLC) to be held from 1-4 May 2012 at the Perth Convention Centre in Perth, Western Australia.

This globally significant event will bring together data linkage pioneers and specialists from around the world and across Australia. They will be joined by scientists, researchers, data linkers, service planners and providers, policymakers and health consumers to discuss and exchange ideas relating to the full spectrum of utilising data linkage to advance knowledge for better health and social outcomes.

We are pleased to offer a comprehensive four-day package that will include a structured conference program comprising keynote presentations from invited leading international speakers and presentations from submitted papers, as well as a series of half-day and full-day workshops covering cutting edge theory and practice relating to a wide range of elements critical to successful data linkage.

Please register your interest today to stay in touch with us as we plan this exciting event for 2012.

www.datalinkage2012.com.au

EuroREACH is an EU funded project aimed at providing health researchers with tools to access health data about care and diseases for EU-wide comparability studies. Additionally, it is intended that a framework for data linkage of European data will be completed, with a proof of concept project focusing on the care received by chronic diabetes sufferers. Information from patient registries, hospital data and administrative sources will be linked across participating EU countries.

Core EuroREACH participants met in Berlin to discuss national data systems, data access and protection, comparability assurance, data sustainability and stewardship and various case studies.

In Tel Aviv, external experts from Australia, Austria, Canada, Denmark, Israel, UK, and the USA met to advise on building data systems for health services research, linkage methods, standardising coding systems, minimum requirements for component data sets and balancing access and privacy.

There will be a further two meetings of the EuroREACH external experts in 2011 and 2012.

Emma presented at both meetings about the data linkage operations in WA and Australia and of course took the opportunity to encourage all EuroREACH members to attend the International Health Data Linkage Conference in Perth, May 2012.

See http://www.euroreach.net/ & http://www.euro.centre.org/detail.php?xml_id=1574  for more information.

Swansea University, Wales
20th to 24th June 2011

The Health Information Research Unit (HIRU) for Wales is hosting a prestigious 5-day training course on the analysis of linked health data.

The course is entitled Advanced Analysis of Linked Health Data, and it will be held at Swansea University from 20th to 24th June 2011.

Further information on the course, including how to register, is available via the following link: http://www.linkedhealthdata.swansea.ac.uk/emailer/

Four free, online workshops are now available from the Education and Training Unit of Population Data BC as part of their  mandate to serve the needs of researchers, analysts and practitioners.

The workshops have been redesigned from their original inceptions as in-class workshops to an online format in order to broaden knowledge mobilisation in the following topic areas.

• Administrative Data 101

• Spatial Epidemiology

• GIS and Epidemiology

• Introduction to Space-Time Disease Surveillance

Visit the links above for more information on each workshop, including video clips outlining workshop content and sign up instructions.

The Education and Training Unit also offers in-person workshops which may be delivered to researchers around the province using our mobile computer lab. If you are interested in Population Data BC delivering a workshop specifically for your organisation, please contact them for further details.

Check the website www.popdata.bc.ca  regularly to keep up to date.

“Exploiting Existing Data for Health Research”

will be held on 9th – 11th September 2011 at the University of St Andrews.

The conference is designed for researchers and practitioners interested in record linkage and the use of routine health data in their research. 

Prior to the conference there will be a 5-day course from 4th-8th September 2011 on the theory and practice of analysis of large sets of linked health and social data at an introductory to intermediate levels.

For more information visit http://www.scot-ship.ac.uk/conference-2011