Katja Stramer

Adoption, non-adoption, and abandonment of a personal electronic health record: case study of HealthSpace

Objective To evaluate the policy making process, implementation by NHS organisations, and patients’ and carers’ experiences of efforts to introduce an internet accessible personal electronic health record (HealthSpace) in a public sector healthcare system. Design Mixed method, multilevel case study. Setting English National Health Service; the basic HealthSpace technology (available throughout England) and the advanced version (available in a few localities where this option had been introduced) were considered. Main outcome measures National statistics on invitations sent, HealthSpace accounts created, and interviews and ethnographic observation of patients and carers. Data analysis was informed by a socio-technical approach which considered macro and micro influences on both adoption and non-adoption of innovations, and by the principles of critical discourse analysis. Participants 56 patients and carers (of whom 21 opened a basic HealthSpace account, 20 had diabetes but were not initially using HealthSpace, and 15 used advanced HealthSpace accounts to exchange messages with their general practitioner), 3000 pages of documents (policies, strategies, business plans, minutes of meetings, correspondence), observational field notes, and 160 interviews with policy makers, project managers, and clinical staff. Results Between 2007 and October 2010, 172 950 people opened a basic HealthSpace account. 2913 (0.13% of those invited) opened an advanced account, compared with 5-10% of the population anticipated in the original business case. Overall, patients perceived HealthSpace as neither useful nor easy to use and its functionality aligned poorly with their expectations and self management practices. Those who used email-style messaging were positive about its benefits, but enthusiasm beyond three early adopter clinicians was low, and fewer than 100 of 30 000 patients expressed interest. Policy makers’ hopes that “deploying” HealthSpace would lead to empowered patients, personalised care, lower NHS costs, better data quality, and improved health literacy were not realised over the three year evaluation period. Conclusion Unless personal electronic health records align closely with people’s attitudes, self management practices, identified information needs, and the wider care package (including organisational routines and incentive structures for clinicians), the risk that they will be abandoned or not adopted at all is substantial. Conceptualising such records dynamically (as components of a socio-technical network) rather than statically (as containers for data) and employing user centred design techniques might improve their chances of adoption and use. The findings raise questions about how eHealth programmes in England are developed and approved at policy level.

Introduction of shared electronic records: multi-site case study using diffusion of innovation theory

Objective To explore the introduction of a centrally stored, shared electronic patient record (the summary care record (SCR)) in England and draw wider lessons about the implementation of large scale information technology projects in health care. Design Multi-site, mixed method case study applying utilisation focused evaluation. Setting Four early adopter sites for the SCR in England—three in urban areas of relative socioeconomic deprivation and the fourth in a relatively affluent rural area. Data sources and analysis Data included 250 staff interviews, 1500 hours of ethnographic observation, interviews and focus groups with 170 patients and carers, 2500 pages of correspondence and documentary evidence, and incorporation of relevant surveys and statistics produced by others. These were analysed by using a thematic approach drawing on (and extending) a theoretical model of complex change developed in a previous systematic review. Main findings The mixed fortunes of the SCR programme in its first year were largely explained by eight interacting influences. The first was the SCR’s material properties (especially technical immaturity and lack of interoperability) and attributes (especially the extent to which potential adopters believed the benefits outweighed the risks). The second was adopters’ concerns (especially about workload and the ethicality of sharing “confidential” information on an implied consent model). The third influence was interpersonal influence (for example, opinion leaders, champions, facilitators), and the fourth was organisational antecedents for innovation (for example past experience with information technology projects, leadership and management capacity, effective data capture systems, slack resources). The fifth was organisational readiness for the SCR (for example, innovation-system fit, tension for change, power balances between supporters and opponents, baseline data quality). The sixth was the implementation process (including the nature of the change model and the extent to which new routines associated with the SCR aligned with existing organisational routines). The seventh influence was the nature and quality of links between different parts of the system, and the final one was the wider environment (especially the political context of the programme). Conclusion Shared electronic records are not plug-in technologies. They are complex innovations that must be accepted by individual patients and staff and also embedded in organisational and inter-organisational routines. This process is heavily influenced at the micro-level by the material properties of the technology, individuals’ attitudes and concerns, and interpersonal influence; at the meso-level by organisational antecedents, readiness, and operational aspects of implementation; and at the macro-level by institutional and socio-political forces. A case study approach and multi-level theoretical analysis can illuminate how contextual factors shape, enable, and constrain new, technology supported models of patient care.

Adoption and non-adoption of a shared electronic summary record in England: a mixed-method case study

Objective To evaluate a national programme to develop and implement centrally stored electronic summaries of patients’ medical records. Design Mixed-method, multilevel case study. Setting English National Health Service 2007-10. The summary care record (SCR) was introduced as part of the National Programme for Information Technology. This evaluation of the SCR considered it in the context of national policy and its frontline implementation and use in three districts. Participants and methods Quantitative data (cumulative records created nationally plus a dataset of 416 325 encounters in participating primary care out-of-hours and walk-in centres) were analysed statistically. Qualitative data (140 interviews including policy makers, managers, clinicians, and software suppliers; 2000 pages of ethnographic field notes including observation of 214 clinical consultations; and 3000 pages of documents) were analysed thematically and interpretively. Results Creating individual SCRs and supporting their adoption and use was a complex, technically challenging, and labour intensive process that occurred more slowly than planned. By early 2010, 1.5 million such records had been created. In participating primary care out-of-hours and walk-in centres, an SCR was accessed in 4% of all encounters and in 21% of encounters where one was available; these figures were rising in some but not all sites. The main determinant of SCR access was the identity of the clinician: individual clinicians accessed available SCRs between 0 and 84% of the time. When accessed, an SCR seemed to support better quality care and increase clinician confidence in some encounters. There was no direct evidence of improved safety, but findings were consistent with a rare but important positive impact on preventing medication errors. SCRs sometimes contained incomplete or inaccurate data, but clinicians drew judiciously on these data along with other sources. SCR use was not associated with shorter consultations or reduction in onward referral. Successful introduction of SCRs depended on interaction between multiple stakeholders from different worlds (clinical, political, technical, commercial) with different values, priorities, and ways of working. The programme’s fortunes seemed to turn on the ability of change agents to bridge these different institutional worlds, align their conflicting logics, and mobilise implementation effort. Conclusions Benefits of centrally stored electronic summary records seem more subtle and contingent than many stakeholders anticipated, and clinicians may not access them. Complex interdependencies, inherent tensions, and high implementation workload should be expected when they are introduced on a national scale.

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

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.

Health informatics education for clinicians and managers—What’s holding up progress?

This paper reports outcomes of a national survey of health informatics (HI) education and training carried out in the UK. A questionnaire to elicit details of HI and IT skills teaching was derived from a national consensus document (Learning to Manage Health Information, LtMHI). Forms were sent to all pre-qualification medical and nursing schools and to a stratified sample of postgraduate and post-registration programmes. Three case studies were carried out in acute hospital trusts to gain insight into opportunities for continuing professional development in health informatics and IT. Our evidence suggests that in the UK, health informatics is not yet integrated into the clinical curriculum. Nearly all the pre-qualification courses made some provision for teaching IT skills. Nonetheless, many respondents felt that students did not receive sufficient training. There was considerable variation in the amount of HI teaching provided in the different educational sectors. The case studies suggested very little HI training was provided for clinical staff and take-up of provision was not monitored. A number of factors are holding up progress, the most important being a lack of staff with the knowledge and skills to provide academic leadership. The paper outlines some steps that need to be taken to ensure health informatics is embedded in all clinical curricula.

‘Never heard of it’– Understanding the public’s lack of awareness of a new electronic patient record

Background  The introduction of electronic patient records that are accessible by multiple providers raises security issues and requires informed consent – or at the very least, an opportunity to opt out. Introduction of the Summary Care Record (SCR) (a centrally stored electronic summary of a patient’s medical record) in pilot sites in the UK was associated with low awareness, despite an intensive public information programme that included letters, posters, leaflets, and road shows.