Patients’ attitudes to the summary care record and HealthSpace: qualitative studyBMJ 2008; 336 doi: https://doi.org/10.1136/bmj.a114 (Published 05 June 2008) Cite this as: BMJ 2008;336:1290
- Trisha Greenhalgh, professor 1,
- Gary W Wood, honorary senior research associate1,
- Tanja Bratan, research fellow 1,
- Katja Stramer, senior research fellow1,
- Susan Hinder, freelance researcher2
- 1Department of Primary Care and Population Sciences, University College London, London N19 5LW
- 2RaFT Consulting, Clitheroe, Lancashire BB7 4BN
- Correspondence to: T Greenhalgh
- Accepted 9 May 2008
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.
We thank the research participants for their time and honesty, and NHS staff in participating organisations for their cooperation and support. Yara Mohammad assisted with some of the interviews. The research was overseen by a multidisciplinary advisory group, which included patient representation.
Contributors: TG conceptualised the study, obtained funding, assisted with interviews and focus groups, led the data analysis, wrote the paper with input from all coauthors, and is guarantor. GWW organised and ran all focus groups with assistance from other coauthors, including liaising with voluntary sector contacts, and took lead responsibility for ethical aspects of the research. TB, KS, and SH designed interview schedules and undertook interviews with individual patients. GWW, TB, and KS, along with a professional transcriber, undertook and checked the transcriptions of focus groups. All coauthors contributed to data analysis and the writing and revision of the paper.
Funding: Department of Health through the Connecting for Health Evaluation Programme (CfHEP/002); the CFHEP is organised through Richard Lilford’s team at the University of Birmingham.
Competing interests: None declared.
Ethical approval: Thames Valley multicentre research ethics committee (06/MRE12/81 and subsequent amendments).
Provenance and peer review: Not commissioned; externally peer reviewed.