Jennifer Doggett writes:
In the era of Facebook and over-sharing on social media do we need to be as vigilant about protecting individual health information as we have in the past?
The tension between balancing privacy issues with access to data for researchers, managers and policy makers in the health sector was a common theme arising at the 4th Rural Health Scientific Symposium in Canberra yesterday.
Privacy is both a legal and an ethical issue, with privacy legislation governing access to personal information and ethics concerns being addressed through ethics committees attached to data collection and research bodies, such as the Australian Institute of Health and Welfare (AIHW) and universities.
Presenters at the Symposium, including representatives of AIHW, the Australian Health Practitioner Regulation Agency, the Australian Bureau of Statistics, the National Health Performance Authority and the Australian Primary Health Care Research Institute, provided delegates with a comprehensive overview of the types of data they collected and made available to researchers. All stressed their commitment to the highest standards of privacy and confidentiality.
Delegates at the Symposium commented on how useful the event was in informing researchers about the types of data being collected and analysed by these organisations.
“I had no idea there were so many sources of data around,” said one delegate from a rural health service. “I can’t wait to get back to the office and explore them further.”
Another delegate expressed her appreciation of the commitment from presenters to supporting health research. “It is an encouraging sign of the interest senior managers have in rural and remote health research that they have given up a day of their time to spend engaging with us in discussions about data issues,” she said.
Difficulties accessing data
In discussing the use of data in rural and remote health research, many delegates raised the issue of data privacy and described difficulties they had experienced in accessing data they wanted to use in their research due to privacy concerns.
In particular, the restrictions on linking and integrating datasets relevant to rural and remote communities were raised as a barrier to effective research in this area.
Some delegates questioned whether it was time to re-visit our privacy legislation and/or to have a community debate about whether current regulations reflect current community values and concerns about privacy issues.
Delegates pointed out that Australia’s main legislative instrument governing access to health data is the Privacy Act 1988, which was developed decades ago, before the advent of new technologies and social media facilitating the availability of publicly available personal information.
Some States and Territories also have their own legislation covering access to health information and data, which can also complicate access for researchers wanting to combine data collected by both jurisdictions.
Professor Sabina Knight, Director of the Mount Isa Centre for Rural and Remote Health James Cook University, thinks that we are ‘too sensitive’ about privacy concerns when accessing and using health data.
“Australia has a number of large geographic regions with low populations and these areas can have significant variations in demographics, health status and access to services.
We need to sensibly manage privacy concerns with the granularity of data required to effectively manage and plan services. In practice, this means we need data on a town-by-town basis.
We also need to be able to link data across State/Territory and Commonwealth boundaries in order to develop interventions that meet local needs.”
Professor Knight is confident that the community would support greater access to data by researchers if it was used to improve access and quality of health care.
“It doesn’t mean that all data has to be publicly available but if universities and health services could access more data it would definitely assist them in identifying and planning to meet the specific health needs of rural and remote communities,” she said.
A senior DoH manager, who asked not to be named, acknowledged researchers’ need for greater access to data but said that the key underlying issue governing access to health data should be consent.
The manager said:
“Just because we can access data, doesn’t automatically mean that we should access it.
We need to be guided by the nature of consent given by consumers when providing their personal information to researchers and government agencies.
Particular caution should be exercised when linking and integrating data sets as the resulting information can go way beyond the limits of consent obtained when that data was collected.”
Lisa McGlynn, who heads the Health Group at the Australian Institute of Health and Welfare (AIHW), is circumspect about the prospect of relaxing privacy regulations, saying that legislation is paramount in protecting the privacy of individuals, organisations and communities.
Understanding the complexities and ethical issues sufficiently to be sure information is being used appropriately, and for the purposes that have been agreed requires oversight from experts skilled in specific areas of information management and ethics.
“It is important that our collection and use of health data reflects the expectations of the consumers, organisations and communities who have provided it, both in terms of protecting privacy and the use to which it is put.
Protecting the privacy of individuals, communities and institutions has to be a priority and this requires an expert understanding of the data being collected and its potential use.
That said, if the correct protections are in place under legislation and information not able to be attributed to an individual or where appropriate consent is in place, people might also be willing that their data be used in an aggregated way to inform decisions like planning services, or research.”
Also important to consider is the need for community ownership of data, an issue particularly important for disadvantaged communities and Indigenous peoples.
A researcher experienced in Indigenous health issues said: “Trust and respect are essential when going into a community to undertake research. It’s essential that the community retains ownership of its data and that the results of any analysis or research are returned to the community for their use.”
In response to a call for re-visiting privacy legislation at the conclusion of the Symposium, some delegates said the issue was more the perception of the privacy legislation than the reality.
“There might not be specific prohibitions for accessing specific types of data but the legislation can be interpreted different ways and often public servants can be risk-averse,” one delegate said.
“Every health executive I’ve asked for data has ‘pulled the privacy card’ at some point. Perhaps what we need is more support for researchers to challenge decisions by organisations and some education for all stakeholders on the specific provisions of the legislation.”
Another delegate questioned why healthcare identifiers are not being used to protect privacy in the provision of health data. “One of the reasons we established the system of healthcare identifiers was to support data linkage in research but no-one seems to be talking about these anymore,” she said.
The issue of privacy and other key topics arising over the two days of the Symposium will be highlighted in a Communique to be released shortly and available on the website of the Alliance.
Related issues have been covered previously at Croakey:
- Calling for open access to Australia’s oral health data sets
- Are Governments locking up information that could be used to improve our health?