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Debate over release of Medicare data continues *Edited to add statement from DHS*

The debate over the use of Medicare data to recruit consumers for a study on bi-polar disorder continues with both consumers and experts expressing concern about the practice and calling for greater transparency from government in its management of personal health data.

In an article published in The Conversation, Bruce Baer Arnold, Assistant Professor, School of Law, University of Canberra and Wendy Bonython, Associate Professor of Law, Bond University, argued that the use of personal medical data to recruit study participants is both “ethically and legally questionable.”

Consumers have also come forward expressing their distress at receiving a letter from the government and argued that it could be particularly harmful for people in vulnerable situations, such as violent relationships.

However, there had also been support for the researchers and acknowledgement of the importance of supporting high quality studies into serious illnesses, such as bi-polar.

The Department of Human Services (DHS) has also released a statement to clarify its policy on the management of personal data and related privacy issues.

These views are summarised below.


Jennifer Doggett writes:

Consumers and advocates have pointed out the wide range of unintended negative impacts that could result from the government using personal medical data to target consumers.

While the invitation letter may not have included any personal medical details, as Arnold and Boyd stated “Implicitly, its mail-out signals everyone on the list has a specific medical condition.”

For people with mental illnesses in particular this could be problematic, causing stress and potentially making their condition worse.  For some it might spark concern that a failure to participate in the study may somehow result in being refused care in the future.  Other consumers felt that it could add to the negative feelings they may have about themselves and their illness.

Arnold and Boyd described the DHS’s use of this data as “deeply disrespectful” adding “The fundamental issue here is one of trust, coercion and consent. People providing their personal information to the government, to access government services including prescribed medications, are doing so through necessity, not choice.”

Concerns about the process

A number of commentators felt that the process followed by DHS was unethical, although it did not appear to breach any legislation or formal privacy guidelines.

Arnold and Bonython wrote “Problematically, DHS’s privacy policy does not indicate it will collect data for this purpose, or use collected data in this way. For DHS to use the information provided in a way that is outside both the reasonable expectation of those providing it, and its own privacy policy.”

*Edited to add: DHS disagree with this view, as outlined in their statement on this issue, and have asked for this statement by Arnold and Bonython to be removed.

Some commentators stated that DHS had breached the trust consumers place in their health care provider to keep their medical information confidential.  Others appeared unaware that the government already had access to Medicare and PBS data, raising the need for broader public education on this issue.

One tweeter made the point that this situation is fundamentally different from one in which a doctor asks a patient if s/he is interested in participating in a research study. The author of the original SMH story, Kate Aubusson, noted that this was not the first time Medicare/PBS data had been used to recruit research participants which further highlighted the need for some community consultation on this issue.

Arnold and Bonython rejected DHS’s reported response to questions from journalists, which was to state that people could opt-out of further mail-outs by emailing the department. They argue that this “…shifts the burden of good data governance onto consumers, rather than beneficiaries of it, for the sake of bureaucratic convenience.”

They also made the point that consumers do not really have a choice about providing their health data to the government, as otherwise they would not be able to access the health care they need.  “People providing their personal information to the government, to access government services including prescribed medications, are doing so through necessity, not choice. Failure to provide the information results in denial of access to the service.”

Support for research

There was also some support expressed for the researchers and the overall goal of the research, which is to improve treatments for people with bi-polar illness.

Future implications

The implications of this incidence for other government initiatives using health data, such as MyHealthRecord, were also raised by some tweeters.

Arnold and Bonython raised broader questions about future data management practices.  They pointed out the value of government-held datasets, such as Medicare, describing them as a “goldmine of potential participants.”  They ask whether other can researchers expect comparable support from DHS in future and, if not, how DHS will decide between research it deems to be of merit, and research it deems to be unworthy of its assistance.

They warn that one possible consequence of continuing this practice is that Australians with data contained in DHS data holdings could be inundated with requests to participate in research, resulting in disengagement and research fatigue.

Their conclusion that this issue is about “trust, coercion and consent” rather than narrow legal definitions of privacy reflects the view of many consumers affected by this incident and indicates the crucial issues that need to be addressed to avoid similar problems occurring in the future.

Comments 2

  1. The power of research allows for a cure of this highly disabling condition. That hope is enough to carry out research in this manner.

    Some people don’t believe in the potential of this and other research to change lives. Don’t impede scientists who have dedicated their lives to alleviate suffering in those who suffer illness.

  2. Jenny K says:

    My partner received one of these letters. The problem was he has never been prescribed lithium or been diagnosed with bipolar disorder. DHS admitted that they had the wrong person and the lithium prescription was for a person with a similar name. We know who this person is…….

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#LowitjaConf2016
#PreventObesity16
#TowardsRecovery
#VMIAC16
#WearablesCEH
#WICC2016
2017 conferences
#17APCC
#ACEM17
#AIDAconf2017
#BTH20
#CATSINaM17
#ClimateHealthStrategy
#IAHAConf17