Patients’ attitudes to the summary care record and HealthSpace: qualitative study

Abstract

Objective To document the views of patients and the public towards the summary care record (SCR, a centrally stored medical record drawn from the general practice record) and HealthSpace (a personal health organiser accessible through the internet from which people can view their SCR), with a particular focus on those with low health literacy, potentially stigmatising conditions, or difficulties accessing health care. Design 103 semistructured individual interviews and seven focus groups. Setting Three early adopter primary care trusts in England where the SCR and HealthSpace are being piloted. All were in areas of relative socioeconomic deprivation. Participants Individual participants were recruited from general practice surgeries, walk-in centres, out of hours centres, and accident and emergency departments. Participants in focus groups were recruited through voluntary sector organisations; they comprised advocates of vulnerable groups and advocates of people who speak limited English; people with HIV; users of mental health services; young adults; elderly people; and participants of a drug rehabilitation programme. Methods Participants were asked if they had received information about the SCR and HealthSpace and about their views on shared electronic records in different circumstances. Results Most people were not aware of the SCR or HealthSpace and did not recall receiving information about it. They saw both benefits and drawbacks to having an SCR and described a process of weighing the former against the latter when making their personal choice. Key factors influencing this choice included the nature of any illness (especially whether it was likely to lead to emergency care needs); past and present experience of healthcare and government surveillance; the person's level of engagement and health literacy; and their trust and confidence in the primary healthcare team and the wider NHS. Overall, people with stigmatising illness were more positive about the SCR than people who claimed to speak for "vulnerable groups." Misconceptions about the SCR were common, especially confusion about what data it contained and who would have access to it. Most people were not interested in recording their medical data or accessing their SCR via HealthSpace, but some saw the potential for this new technology to support self management and lay care for those with chronic illness. Conclusion Despite an extensive information programme in early adopter sites, the public remains unclear about current policy on shared electronic records, though most people view these as a positive development. The "implied consent" model for creating and accessing a person's SCR should be revisited, perhaps in favour of "consent to view" at the point of access.

Factors that influence public engagement with eHealth: A literature review

“…However, Lower levels of mental health, along with higher perceptions of general health, were positively correlated with levels of Internet use in Bowen et al [26]. Contrary to expectations, Greenhalgh et al [21] found that those defined as having a potentially stigmatising condition e.g. epilepsy, believed that the potential benefit of having an accessible health record in the event of a seizure outweighed the risk of a third party obtaining unauthorised access to their health record..…”

“…Openness to using eHealth resources was also highlighted as a facilitating factor in Flynn et al's study of Internet health information seeking [17]. Finally, Greenhalgh et al [21] noted that level of engagement and level of health literacy were associated with a positive response to eHealth services, while a lack of interest in one's own health was likely to reduce use. While prior use and a familiarity with the Internet appear to be significant factors affecting uptake of eHealth services, poor computer skills, not being able to find specific resources or not knowing that relevant resources are available also inhibit use.…”

“…applying acquired information to own personal circumstances. In a later qualitative study of patient attitudes to a range of eHealth services, Greenhalgh et al noted that respondents with higher literacy levels were likely to have a greater awareness of eHealth services [21].…”

Digital technology use among disadvantaged Australians: implications for equitable consumer participation in digitally-mediated communication and information exchange with health services

“…through electronic health records) 13,14 without explaining how benefits will result. Indeed, more critical approaches find potential for increased discrimination and inequality, 15 as digital inequalities are intertwined with other inequalities, such as poverty and remoteness, and parallel the uneven distribution of chronic disease. [16][17][18] Furthermore, some assume that all consumers are abandoning traditional media channels 14 and that the Internet enables 'unfettered access' to information for all.…”

Patient confidentiality: ethical, legal and regulatory responsibilities

“…However, it is difficult to opt out if you are not aware of the implementation of the system. This model of consent has been criticised by the BMA [16,17] and was the subject of an independent evaluation by University College London, which concluded 'The "implied consent" model for creating and accessing a person's SCR should be revisited, perhaps in favour of 'consent to view' at the point of access' [18]. For example, consider having such conversations or discussions in the doctor's office.…”