3.2.1 Intentions for using digital health technologies for tracking and sharing personally generated health data.

We focused on reported intentions as they can be a motivating factor in adopting and using digital health technologies, distinct from user experience or TIPS considerations. We found four main themes arising from our analysis. These centre around supporting individual self-management, engagement with the data for self-reflection, supporting the patient-care provider relationship and agency and ownership. We discuss these themes in more detail next.

A common theme found in the reviewed work was Support Patient Involvement, reported in five publications [41,45–47,51]. Users shared their personally generated health data to become more active in their personal health and care. Some positives noted from intention were: live updates of patient information; and treatment regimens and promoted adherence.

“Participants from all groups suggested it would be beneficial if the app could be used to record information, including details of their treatment regimen (eg, medication, fluid target, and diet), appointments, and linkup with existing electronic patient records. This could promote treatment adherence by providing reminders and alarms, for example, for their medication and encourage children to record when treatment had been completed.” [46]

Related to this theme is the sense of Agency and Ownership over their personally generated health data. Having control over their data was found to also go hand-in-hand with the ability to self-manage their condition:

“Participants also described a sense of increased agency and being empowered to manage their conditions through a central place where they could self-administer changes in their personal details and be in control of their own health data, including how it was used in research.” [42]

The sub-themes Engagement with Data for Self-Reflection [38–40,44] and Supporting Individual Self-Management [39,43,44] noted intentions that benefit individuals who share their data. After data is shared through an app, users are able to engage with their personally generated health data to reflect on symptoms and experiences of LTHCs. For example, a study with people with psychosis showed that digital health interventions with a symptom tracking functionality could “give people space to understand their experiences for themselves:

“Participants were positive about the ability of smartphone technology to keep a track of their symptoms and experiences. Many thought that this ability would actually enhance their understanding of psychotic experiences. “I think it would be a great help because people would be able to see the warning signs very early on and go ‘hang on a second, this isn’t right, what do I need to do to help myself’” [40]

Reflecting on one’s data is one way to Support their own self-management of a LTHC. Across three publications [39,43,44], participants highlighted the importance of tracking features in digital health technologies, in order for them to compare against others or to obtain further information about how their treatment is progressing. Others suggested that sharing to support self-management was beneficial for LTHCs so they could remain abreast of treatment efficacy.

“One patient said, “It would be nice to be able to keep up with how your treatment’s going, kind of knowing if you’re… getting better… A lot of times when you have Cancer you always have a question mark over your head–where am I?”” [43]

It was noted in three publications [38–40] that engaging with, and reflecting on, personal data promoted increased understanding of LTHCs and could further their self-management. This motivator to share seemed to endorse the concept of the ‘informed patient’ [54], allowing users to contemplate declines and improvements in their health and identify any causal factors.

3.2.2 User experience.

We analysed the experiences that users reported as part of sharing personally generated health data through digital health technologies. We divided these reports into two themes, positive and negative experiences, and we described their respective aspects which underlie these experiences as sub-themes.

Positive experiences were described in four of the 17 publications [39,40,42,47]. Three of these publications noted that data sharing within digital health technologies facilitated Instantaneous Access with relevant healthcare professionals, either as part of a routine engagement or when facing extraordinary circumstances e.g., away on holiday. It was suggested that users either felt more comfortable using a digital health technology as a medium to share data, as opposed to face to face interactions, or it was more convenient:

“Technology was viewed as a good way of accessing help and support when needed because participants reported often feeling restricted by traditional face-to-face service provision. “It’s not like a GP [general practitioner] where you’ve gotta go up the road and then speak to him. [using technology] You can easily sit in your own home and read through the app…when I’m going to a GP…I’m silent.””[40]

“Individuals with SCI highlighted that the app could be particularly useful under extraordinary conditions (ie, outside of their daily routine). According to them, these were situations where even experienced wheelchair users might be hesitant or unable to use their usual means of contact (ie, telephone call). Frequently mentioned examples of such extraordinary circumstances were during holidays abroad, where one might not trust the foreign health care system, or when fallen ill. Wheelchair users also described nighttime and weekends as situations where the app could potentially come in handy. “You can directly get in touch with people, with specialists, I would appreciate that. For example, I once had a bruise when I lived in the south of France, then I actually did it exactly like that: I took pictures and thought about which doctors I knew and sent the photo.”” [39]

Associated with this aspect is also that sharing personally generated health data through digital health technologies can Facilitate Disclosure which was described in two publications [39,40]. Users suggested that sharing personally generated health data via digital health technologies, as opposed to face to face, was advantageous if the data is perceived as sensitive which can then contribute to providing open and honest information:

““Or you can also ask the question anonymously if you are embarrassed, if the pressure injury is in an embarrassing place, for example. [Then it’s probably easier to ask such a question], I could imagine. Maybe if you’re embarrassed about having to take a picture [of a pressure injury] on your butt.”” [39]

“The fact that an app is anonymous appealed to some because direct clinician contact can reinforce people’s sense of guilt or failure if they have not completed therapy tasks or complied with medication. “You don’t feel guilty if you haven’t done your homework.”” [40]

One publication noted that users also experienced positive aspects of digital health technologies for the sharing of PGD in terms of Longevity of Data [42]. This was especially salient for those who had previous experience of such:

“The following quotation from a patient with IRD (Inherited Retinal Disease) highlights an instance where she relocated to a different geographic area, which resulted in the loss of all her eye data, including her family history map of IRD. “From a personal perspective as well, we wouldn’t have lost our data and my mother would be able to know which side of the family all this came down from. So, if I’d have had that data we would still have that along with my letters from 1995. Yeah so, you will not lose your own data because it’s so important to you whereas we are just 1 in 60 million people in the United Kingdom.””[42]

Negative user experiences were stated in five out of the 17 included publications [37,40,47,48,50]. The reported experiences fell into two broad themes, Fear of Misuse through Theft or Accidental Disclosure and Fear of Judgement of Self-Management Practices.

Four publications dealt with the theme of fearing that shared data may be misused by others. Concerns reported were theft or accidental disclosure:

“Hackers getting [into] everything…I had to change banks because…they had everything—my name and address—my mom’s maiden name.”[50]

“If the app is asking you to pull it out every time you’re in a social situation, it gets embarrassing and that can add to the anxiety you feel in a social situation.”[40]

The fear of accidental disclosure was especially present in rural communities, where there was a high chance that the user’s healthcare staff may possibly live within their local community and know the user and their family and/or friends personally. These negative experiences related to fear of misuse could be allayed by design features later discussed under Privacy and Security.

Users in two publications noted a Fear of Judgement of Self-Management Practices [47,48] when sharing personally generated health data through digital health technologies. While sharing data can also Facilitate Disclosure, there is a fear that healthcare professionals might be critical of one’s self-management practices:

“With the onset of diabetes, its “correct” management–as testified by the glycaemia levels and by the glycated haemoglobin value–is perceived as a factor used to evaluate the individual and his/her abilities, personal and parental, just as usually happens with educational performance. “There’s always this sentence that I will never forget: either you’re good or you’re not good! There’s a good patient, and there’s a bad one. So that being good means having good glycates. How can you say that a person is good on the basis of his or her glycates?”” [48]

3.2.3 Design features.

We now describe the design features that seemed to positively influence TIPS, as extracted from the reviewed publications.

Design features to inspire trust. Two publications [43,46] reported that features to support Mutual Disclosure enhanced trust. Users from one publication recommended that digital health technologies provide a space to share qualitative personally generated health data with peers so that they may compare and contrast personal experiences. In the reviewed digital health technologies, the ability to mutually disclose personally generated health data with peers increased the user’s perceived value of the digital health technology, essentially promoting trust and prompting engagement via inclusivity.

Three publications [39,40,46] considered Host Credibility an important factor affecting user trust in digital health technologies. If data sharing through a digital health technology originated from what was deemed to be a credible host, user trust increased and concerns surrounding the trustworthiness were somewhat allayed:

“Many participants said that endorsement of a DHI [Digital Health Intervention] by a valid institution (eg, university, health service, or respected, well known mental health charity) would be sufficiently reassuring and would increase DHI uptake.”[40]

Some users believed that digital health technologies were better endorsed by individuals, as opposed to organisations, as they were less likely to be working toward an agenda they were unaware of. Recommendations from their care team were often sufficient for them to place trust in the digital health technology.

Sharing personally generated health data can be used for Personalisation, as described in three publications [39,44,46], and this feature can then inspire trust and improve self-management. Instead of generic advice, users would like their shared data to be taken into account to shape advice according to their individual preferences, lifestyle and health.

“Personalization technologies can help to better tailor the self-management app to an individual user’s needs and preferences […] by ensuring that recommendations regarding preventive measures are perceived as relevant and actionable rather than generic advice […] However, for personalization to be realised, users are required to disclose personal information.” [39]

Design features relating to Identity. Design features relating to identity were rarely mentioned in the reviewed publications. Only one publication touched on this theme, exploring Anonymisation to protect patient’s personal identity in real life and their digital identity. While the benefits of sharing data, especially for advancing research into LTHCs, were clear, users felt more comfortable sharing their personally generated health data with third parties if their data had first been anonymized and that any personally identifiable data were removed from the shared data, with obvious connections to privacy and security:

“Sharing of data in an anonymized form was perceived as a necessary safety feature by participants. “I would be happy to share my clinical information if it helps research or…but then maybe to disconnect my personal sort of data away from that.””[42]

The same publication [42] described how their digital identity and associated data can contribute to a Larger Sample to build up information that is useful for the community, especially for rare diseases, which would also help healthcare professionals to increase understanding, education and inform optimum treatment pathway. This theme exemplifies benevolence as an aspect of trust but some users might value privacy over benevolence.

Design features relating to privacy. Privacy was the most prolific theme found in the included publications, with nine different publications covering design features that related to privacy. Eight publications [38–40,42,43,45,48,50] reported either user behaviour or requests for digital health technology that supported Selective Data Sharing. Behaviour with digital health technology that does not support these design features often involved users censoring or withholding certain personally generated health data dependent upon the recipient—being “a little less honest” [40]. ‘Privacy by design’ [55] was suggested as an approach to support granular permissions to access and share data which in turn can increase trust. Users also highlighted that it would be beneficial to selectively grant permissions, for example, granting periods of access to shared data as opposed to unrestricted and the ability to remove permissions to certain parties if and when deemed appropriate. Related to this theme is Hiding Information, referenced by one publication [53], to avoid accidental disclosure to bystanders who might observe app use—relating to the earlier Fear of Misuse through Theft or Accidental Disclosure theme. It is suggested that parts of apps could be hidden quickly and flexibly so that shared data cannot be seen by third parties.

‘Privacy by Design’ also covers Informed Consent in which users opt in to share data in the first place, underpinned by a Privacy Policy, which four publications focused on [39,40,42,43]. Users want to have detailed information about who has access to the data and the purpose of accessing the data:

“So, knowing, I suppose, where that data’s going, who’s got the data, or what it could be used for, the potential research…just knowing kind of an overview of what it’s for, what the reason this is for, then people can make that decision. I think it’s important.”[42]

“However, recent reviews of publicly available smartphone apps revealed that less than a quarter of those available for bipolar disorder included a privacy policy and less than 10% of those available for social anxiety provided organization information. This contrast between current information provided on public ally available mental health smartphone apps and the preference of service users for DHIs from trusted sources suggests that content information currently available may not be sufficient to alleviate service user privacy concerns, thus potentially negatively impacting engagement. Future developers must ensure that clear and explicit statements regarding privacy and organizational sources are made available.”[40]

Informed consent and the availability of a privacy policy highlights the importance of transparency of data sharing, facilitating a sense of ownership of said data, the credibility of the host, and trust in and engagement with the digital health technology. This informed consent also extends to re-use of the data for purposes other than originally intended by the digital health technology or by organisations not originally part of the informed consent. A problematic aspect is that if data were shared anonymously, there should be no way that individuals can be traced–informed consent thus needs to be given to any organisation for any purpose right from the start. Indeed, even if the data is not anonymised, General Data Protection Regulation (GDPR) requires clarity around data controllers, data processors, and the purpose for which the data is stored and processed.

Whilst the information is found in privacy policies, our analysis suggests that data use, permissions and users rights regarding their data are not always clear, concise and transparent, as they are evidencing the need for reiteration. Communication of Privacy Considerations that digital health technology were making had an impact on privacy concerns [39,42]. To ensure the transparency of the privacy statement, developers must ensure that they relay information in a clear, concise, accessible method:

“All this information needs to be accessible to prospective users in a clear and concise format, informing them about their rights to access and control their data. However, how personal information is handled by mobile health apps often remains unclear. Some apps, for example, track and share user data continuously by default, even when the app is not in active use, sometimes without explicitly informing users about these tracking practices in their terms of use.” [39]

This may be achieved in various ways, from visualisation techniques to comprehensive privacy information. Communicating privacy policies well can lead to a sense of ownership of data, and in turn also inspire trust.

Design features relating to Security. Security design features were covered by three different publications [39,40,42]. In all these publications, we identified the theme of Data Handling Practices, which were important to users to help allay their Fear of Misuse by Others. Users were keen to know how their data was protected, and the host organisation’s data governance:

“In particular, participants raised questions regarding the storage, sharing, backup, and deletion of personal data. “On the one hand, that would be an advantage for me and certainly also an advantage if you could read it again. On the other hand, I simply have to ask myself, is the data even stored safely? Does it really stay where it is or is it passed on to third parties?””[39]

“About two-thirds (16/21, 76%) of participants expressed concerns about data protection and information governance. However, participants stated that their fears about information safety could be allayed if services reassured them about data safety.” [40]