Digital healthcare technology providers have not yet earned the public’s trust, and clear policies with regards to data ownership and privacy could outweigh even aspects of performance when it comes to nurturing confidence in their technologies. These are among the findings of an online consultation organised by Pitch‑In in July 2020 to explore people’s attitudes towards digital healthcare technologies and their health data.
The topic of this workshop was suggested by the results of an earlier workshop about people’s attitudes towards the use of digital technologies for helping to contain the Covid‑19 pandemic. In this case, we expanded our focus to consider public attitudes towards the use of all digital health technologies. Once again, we adopted the community philosophy small-group approach to conduct a considered exploration of the nature of trust and how it relates to the decisions we make in our everyday lives. In this case, the group consisted of seven of the participants in the first workshop, with the activity planned and guided by two facilitators trained in this mode of public engagement. As with the first workshop, then, the results cannot be considered representative of the population as a whole, but do give some insights into public attitudes. The workshop lasted for 2 hours, and was followed up with a questionnaire that asked specific questions about the role of trust in making decisions about healthcare data and technologies. Here we discuss the results of this questionnaire.
“Digital healthcare technology providers have not yet earned the public’s trust…”
The first question gauged the level of experience of digital healthcare. Most participants had used the internet to search for health or related services or, more directly,to look for healthcare advice, but none had had an online consultation with their GP or other healthcare professional. Two had used some sort of domestic device for monitoring their health, but none had any experience of wearable consumer health and wellbeing devices, such as activity trackers (figure 1).
The second question asked directly about the level of trust the participants had in each of a number of different sources of healthcare information or advice by rating each source between 1 (“no trust at all”) and 5 (“trust completely”). Perhaps unsurprisingly, healthcare professionals (GPs, pharmacists, social care professionals) scored highly. At the other end of the scale, national government, healthcare insurers and social media vied forthe unwanted accolade of the least trusted source, with local councils, conventional media and pharmaceutical companies not too far above them (figures 2a and 2b). The degree of mistrust of national government in particular might be attributable to its poor handling, in the opinion of this group, of the Covid-19 pandemic, an opinion that the results of the previous workshop made evident. Healthcare technology providers lay somewhere between the two extremes, although the responses to the first question suggest that the participants’ rating might be based on few actual interactions with such providers.
The next question asked the participants about the extent to which they felt that data about their own health is under their control, by providing a score from 1 (“no control at all”) to 5 (“fully under control”). With a median(and mode) response of 2, the participants, as a group, did not feel themselves to be particularly in control of their data (figure 3).
This led to the next question, concerning the extent to which the participants would be willing to share their health data with particular people or organisations. Here, the extent of willingness to share was indicated by a score between 1 (“not at all”) to 4 (“completely”). The participants said they were most willing to share with NHS healthcare professionals, followed by independent research organisations (including universities) and family members, then various other health and social care professionals. At the other extreme, they were least likely to share with national government and pharmaceutical companies, and with healthcare technology providers ranking only a little better(figures 4a and 4b).
In summary, the results of this exercise do nothing to dispel the notion that trust is a critical yet elusive aspect in the acceptance of digital healthcare technologies. While some of the results were predictable, others were more surprising, and reinforce the idea of trust as anattribute of the complex relationship that users have with healthcare providers, systems andservices, and with wider society. Individuals and organisations, the advice they give and the practices they follow can be just as influential – in both a positive and negative sense – as the features and performance of the technology itself. When developing and promoting digital healthcare, the various choices at each stage made need to be carefully weighed to avoid raising suspicions and sowing scepticism. Clearly, we still have much to learn about the factors that create and nurture trust, and the role it plays in the success of digital healthcare and, ultimately, in improved outcomes for service users.
Both this and the earlier workshop form part of the ongoing Pitch‑In IoT for care – awareness-raising workshop programme. Once again, we would like to thank Kate Halliwell and Grace Lockrobin, who coordinated and facilitated this community philosophy exercise on behalf of Pitch‑In, and to all the participants, who were very generous with their time and opinions. If you want to know more about the coronavirus and how to protect yourself and your family from Covid‑19, please visit the NHS coronavirus website: https://www.nhs.uk/conditions/coronavirus-covid-19/.