Findings on trust in sharing data

The findings for the question “can you think of any reasons why you wouldn’t share information about yourself for research?” has been categorised by sub-theme and reported with quotes to illustrate points and provide deeper insight.

Reasons that encourage data sharing 

Participants explored various circumstances in which they are or would feel comfortable sharing personal data for research purposes. These include:

  • when the purpose is clearly explained
  • when the reason for wanting the data is seen as relevant
  • when the data will be used to benefit society, the participant, or people in their communities
  • when the topic is not overly intrusive
  • when it is clear who will be able to access the data
  • when they retain choice and control over sharing their data or answering questions

Some participants noted that they could not think of any reasons that would stop them sharing information for research purposes and suggested that the better informed the research the more accurate the findings will be (Woman, 32, digitally impoverished).

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Purpose and content of research

Participants stressed that the research purpose and content would affect their deciding whether to participate. Additionally, the importance of understanding why the research is taking place, who can access their data, and what happens to the data when the research ends was noted. One participant also made specific reference to General Data Protection Regulation (GDPR) practices.

“I would be concerned what the information would be used for and who it would be passed on to.” (Woman, 79, lacking digital skills).

“If I was unsure of the legitimacy of the research I would not feel comfortable sharing any of my data.” (Woman, 57, lacking digital skills).

They also expressed being happy to share personal information if it was seen to benefit society and provided positive impacts.

“It is important to share information with research to have an overall understanding.” (Woman, 73, lacking digital skills).

Some participants expressed having limits to the information they would feel comfortable sharing, with some stating that they would not partake if topics were seen as intrusive research and included personal sensitive information.

“It depends what’s being shared and to whom. You’re only sharing what you want them to know, but at the same time your information could be shared anywhere.” (Woman, 56, lacking digital skills).

“Important to me to have choice to refuse if I feel uncomfortable and pressured.” (Woman, 68, lacking digital skills).

There were mixed opinions on sharing personal health and financial information. Some participants highlighted these as important issues for decision makers to be aware of. Others noted that they would not be comfortable sharing this information due to concerns that it could be used against them.

“Regarding financial information could be worried it would be used against you, say if you were going through divorce proceedings. Or worries about being truthful if you are self-employed and not declaring your tax properly.” (Woman, 40, lacking digital skills).

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Reasons that discourage data sharing

Participants highlighted various reasons why they are not or would not be comfortable sharing personal data for research purposes. These include:

  • when privacy is their key concern and the research is seen to undermine that
  • when they are unsure of data security
  • when they do not trust the researchers (including government)
  • when there is a perception the data could be used in ways which harm the participant or people in their communities
  • when they feel the data could be “misused”
  • when there is a perception that anonymity will not be respected and they worry others will know something about them
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Privacy concerns

Some participants spoke about their concerns with privacy, mainly regarding anonymity and confidentiality. Privacy concerns were linked directly to distrust of technology and secure storage of data, with some participants highlighting their “fear” of their personal data being hacked or experiencing an “intrusion of privacy”.

“Anything stored on a computer is vulnerable to being ‘hacked’ into.” (Woman, 75, digitally impoverished).

“I would never disclose my exact date of birth, full name, bank or credit card details, in cased of possible fraud.” (Man, 77, digitally impoverished).

Some participants note that they would share personal data if they trusted that the data would be kept secure and confidential.

“I am happy to share my information if I think it is to my advantage and with someone who will protect it.” (Man, 64, lacking digital infrastructure).

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Perceived safety of systems

Some participants referred to online data collection and the perceived safety of these systems.

“You need to be careful how much personal information you reveal online. Sharing your address, phone numbers, birthday and other personal information can mean you are at a greater risk of identity theft, stalking or harassment…We need better and safer internet data for everyone to use.” (Woman, 51, lacking digital infrastructure).

Identity theft, scams and nuisance calls were some of the main reasons these participants suggested an unwillingness to share information about themselves for research. The selling of data to third parties was of particular concern.

“I’d just be worried in case any personal information became very public and then you’d get scammers and advertised/cold callers getting in touch.” (Woman, 45, lacking digital infrastructure).

“I would not like to have my personal information e.g., income, or health be made public or shared with companies that want me to purchase things.” (Man, 64, digitally impoverished).

When talking about scams and nuisance calls, one participant also suggested this is why I don’t want my information being shared by anyone to anyone (Woman, 23, digitally impoverished). Another suggested I don’t like to share any information if I can help it” (Woman, 84, Lacking digital skills).

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Trust in organisations

Trust in organisations was a key theme in relation to concerns of fraud and scams. Some participants talked about the importance of a “trusted” source or an organisation that they knew of.

“I would never share information about myself to people I don’t know or trust.” (Woman, 68, lacking digital skills).

One participant also expressed a general distrust of government and the police which has impacted their data sharing behaviours.

“Generally, I do not trust the government or police. For example, I did not download the track and trace app as I worry about my location being shared.” (Woman, 25, lacking digital infrastructure).

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Negative impact of sharing personal information

Concerns were expressed around how sharing personal data for research purposes may negatively impact themselves and those around them.

“There is a possibility that having shared info that this could or would be misused or misrepresented whereby having a negative impact on myself, family, and communities or lead to a lack of trust.” (Man, 61, lacking digital infrastructure).

Embarrassment and judgement were also given as reasons for participants not wanting to share their information for research.

“If you were embarrassed. Concerned about being judged. Poor self-esteem… Wouldn’t want my info to be a source of gossip or amusement to office staff.” (Woman, 40, lacking digital skills).

There were also concerns raised around providing information on behalf of other people, with some participants stating that they would not feel comfortable sharing information about their family.

“How others (family and friends) would view any ‘over exposure’ if confidentiality was breached (are they implicated).” (Man, 61, lacking digital infrastructure).

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