How People Feel About Their Health Data Being Used For Research

I’ve written extensively recently about the growing importance of data in health care, and not least in supporting medical research.  In such a rapidly evolving field, it’s tempting for individual patients to be left behind somewhat, so a recent paper makes a crucial contribution to the dialog.

The paper provides a systematic review of the public attitude towards sharing personal health data for medical research purposes.  In total, the paper analyzed 25 past studies into the matter, with this analysis primarily covering the UK and North America.  Whilst it should be said that these 25 studies only ran up until 2013 so might not represent the latest thinking, they still provide a number of valuable themes for consideration.

General support

The studies reveal a broad support for the use of personal data in health research, with respondents typically thinking that such work is in the public interest and therefore for the greater good.  People would usually regard their data as being used in the development of new treatments or the improvement of services.

Indeed, in a number of studies, people expressed a degree of surprise that their data wasn’t being used for research already.

“Many studies reported that participants considered research uses of data to be in the public interest and conversely that not using data was against the public interest since this was a resource which should be used, not wasted,” the authors say.

That isn’t to say that support is unconditional, however, and respondents still require their data to be used in the right way. 

Public trust

For instance, considerable concern was aired around privacy, and even anonymization of data was felt to be no guarantee of privacy, especially among patients with rare conditions.

There was also a general demand for safeguards in place to ensure data was used wisely, but the public generally lacked awareness of what these might be, or indeed how data is used in research today.

People were also adamant that their data only be used for valid research, and these concerns have aired again around projects such as DeepMind’s healthcare ledger technology.

The greater good

In addition to data security, the respondents were also keen that any fruits of their data should be available for the public good.

“Whilst in some cases perceived personal benefits, or personal relevance of research was reported to motivate participation in research, benefits of research were largely conceptualised in terms of benefits to wider society, or ‘the greater good,’” the authors say.

As such, it was seen as crucial that participants were assured that their data would benefit society in order to gain their trust and buy-in for their data to be shared with researchers.  If research was deemed to be purely to boost the profits of companies, participants reacted very negatively.

Control over data

Another issue that I raised with the DeepMind health data work is around ownership of the data, and this was again a common thread of the studies analyzed.  People want control over what data is collected, who has access to it, how and with whom the data is shared, and for what purposes the data is used.

Central to this however was trust in the research partners.  For instance, Google operate by selling advertising against our data, so it’s perhaps understandable that people are prickly about them gaining access or control over something as personal as health data.

When people trust the organizations however, they are less stringent about control of their own data.  This desire for control is similarly diluted when the benefits of ceding control are so large for society.

“In a number of studies it was found that, whilst individual control was highly valued, participants did not want this control to come at the cost of creating barriers to research. Thus it was often found that participants felt that individual control needs to be balanced with efficiency of research,” the authors say.

Public versus private

This issue of trust was further emphasized in concerns people had around the involvement of private companies.  This revolved around low levels of trust in the private sector, and the belief that such companies are primarily motivated by profit.  It further emphasizes the desire of participants for their data to be used for the greater good rather than to line the pockets of the private sector.

Suffice to say, this should not be taken to mean people opposed the participation of the private sector in medical research, but rather that participants want assurances that their data would be used for the greater good first, profit second.  What’s more, they express a desire for any profits to be reinvested into public good projects.

The private sector clearly have a lot to offer in this field, but it has to be approached correctly in order to take individuals on the journey with them.

Data oversight

It should be clear by now that trust underpins everything, and many of the studies advocated an oversight or regulatory body that could ensure that our medical data is managed appropriately.

“Participants in the included studies often expressed a preference that data-sharing and research uses of data be overseen within, and governed by, the public sector,” the authors say.

Whilst trust is fundamental, so to is greater transparency, especially around research practice and usage of data.  People want to know how their data is being used in research, with a great deal of awareness raising required to ensure the public are on board.

I’ve expressed a number of times the enormous potential for better uses of public data in health research, and it’s pleasing that the public seem to be broadly supportive of this, but it is crucial that the process is managed properly to ensure that support endures.

“The included studies point towards widespread support for uses of data in research, including for practices of data-linkage and data-sharing. However, this support is never unconditional. Key conditions for public support or acceptance relate to the research being in “the public interest” or for “the greater good” and to public trust in researchers or organisations handling/accessing their data,” the authors conclude.

In order to ensure public support for future research uses of data greater awareness raising combined with opportunities for public engagement and deliberation are needed. This will be essential for ensuring the legitimacy of future health informatics research and avoiding further public controversy.

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