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Adoption, non-adoption, and abandonment of a personal electronic health record: case study of HealthSpace
Open accessAbstract
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.
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“For example, attempts to introduce shareable electronic records by first encouraging patients to enroll, and then hoping that health care providers and organisations will follow, have failed due to resistance of clinicians and healthcare organisations [27, 28].”
From Transitioning a home telehealth project into a sustainable, large-scale service: a qualitative study (2016) · cites this paper as [27]
In the citing paper
“Additionally, these findings suggest the need for closer proximity between innovation design and evaluation, so that critical insights might usefully feed back into design and implementation [11,13] ensuring interventions are ‘minimally disruptive’ for recipients [42].”
From Exploring barriers to participation and adoption of telehealth and telecare within the Whole System Demonstrator trial: a qualitative study (2012) · cites this paper as [13]
In the citing paper
“Previous studies have described the challenges brought by the new ‘work’ and scrutiny associated with such interventions [12,38,39] and where the disruption of normalised everyday practices and interactions regarding management have been recognised a major barrier to the integration of e-health interventions into routine care and management [13,40,41].”
From Exploring barriers to participation and adoption of telehealth and telecare within the Whole System Demonstrator trial: a qualitative study (2012) · cites this paper as [13]
In the citing paper
“However, the existing evidence mainly relates to organizational readiness within the health service [17,18] or the readiness of health professionals [19-21], patients or carers for a specific single digital health service [22].”
In the citing paper
“Previous research relating to the use of personal electronic health records has demonstrated less public and professional appetite than anticipated [22,44].”
In the citing paper
“Information and communication technology (ICT) programmes in health care fail partly because people do not use the technologies.”
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“• In the English portal called HealthSpace, a summary of medicines, allergies, and adverse reactions was shared across the English NHS and was accessible to patients [54].”
BackgroundUser Evaluation of the Swedish Patient Accessible Electronic Health Record: System Usability Scale
Hägglund, M., & Scandurra, I. (2021) · JMIR Human Factors · doi:10.2196/24927 · Cited by 54
“Despite these benefits, adoption and use can be low [19], and several studies have explored factors that influence adoption [20,21].”
BackgroundPhelps, R. G., Taylor, J., Simpson, K., Samuel, J., & Turner, N. (2014) · Journal of Medical Internet Research · doi:10.2196/jmir.3371 · Cited by 55
“Patient-accessible electronic health records (EHRs) could have many advantages, but patient enthusiasm and use have been variable [1,2].”
Undertaking sociotechnical evaluations of health information technologies
Cresswell, K. M., & Sheikh, A. (2014) · Journal of Innovation in Health Informatics · doi:10.14236/jhi.v21i2.54 · Cited by 58
“2,14,15 With this in mind, it is, for example, often insufficient to only explore healthcare professional perspectives on technology implementation and adoption; there is also a need to gain insights into managerial and organisational perspectives to get a more rounded understanding of…”
BackgroundMixed methods for telehealth research
Caffery, L. J., Martin‐Khan, M., & Wade, V. (2016) · Journal of Telemedicine and Telecare · doi:10.1177/1357633x16665684 · Cited by 51
“The theoretical approaches of ethnography and the socio-technical approach have also been combined by Greenhalgh et al.(37) in researching the uptake of e-health and telehealth.”
MethodHemsley, B., Rollo, M. E., Georgiou, A., Balandin, S., & Hill, S. (2017) · Patient Education and Counseling · doi:10.1016/j.pec.2017.07.010 · Cited by 53
Over promised, over-sold and underperforming? – e-health in mental health
Wykes, T., & Brown, M. (2016) · Journal of Mental Health · doi:10.3109/09638237.2015.1124406 · Cited by 52
“– e-health in mental health”
BackgroundOlder adults using a patient portal: registration and experiences, one year after implementation
Wildenbos, G. A., Maasri, K., Jaspers, M., & Peute, L. (2018) · Digital Health · doi:10.1177/2055207618797883 · Cited by 53
Shen, N., Sequeira, L., Silver, M. P., Carter-Langford, A., Strauss, J., & Wiljer, D. (2019) · JMIR Mental Health · doi:10.2196/13306 · Cited by 52
Factors influencing consumer adoption of USB-based Personal Health Records in Taiwan
Jian, W., Syed-Abdul, S., Sood, S. P., Lee, P., Hsu, M., Ho, C.-H., Li, Y., & Wen, H. (2012) · BMC Health Services Research · doi:10.1186/1472-6963-12-277 · Cited by 49
“The American Academy of Pediatrics supports development of educational programs for families and clinicians to promote effective and efficient use of the personal version of Electronic Health Records, called Personal Health Records (PHRs) as a way of improving the quality of healthcare for children [6].”
BackgroundInfluentialFontelo, P. A., Rossi, E., Ackerman, M., & Marceglia, S. R. F. (2015) · Applied Clinical Informatics · doi:10.4338/aci-2014-12-ra-0115 · Cited by 49
Patient perspectives on a personally controlled electronic health record used in regional Australia
Hanna, L., Gill, S. D., Newstead, L., Hawkins, M., & Osborne, R. H. (2016) · Health Information Management Journal · doi:10.1177/1833358316661063 · Cited by 48
Ethical questions must be considered for electronic health records
Spriggs, M. P., Arnold, M., Pearce, C. M., & FRY, C. L. (2012) · Journal of Medical Ethics · doi:10.1136/medethics-2011-100413 · Cited by 48
“We know that many people will not take up these options and will not engage with PCEHRs or in their own healthcare more generally, often due to higher priority factors like social instability, poverty, major family stress or serious disabilities.(1) A medical record is an important resource in the healthcare platform,…”
BackgroundInfluentialHistory and Trends of "Personal Health Record" Research in PubMed
Kim, J., Jung, H., & Bates, D. W. (2011) · Healthcare Informatics Research · doi:10.4258/hir.2011.17.1.3 · Cited by 46
Transforming healthcare: policy discourses of IT and patient-centred care
Klecuń, E. (2015) · European Journal of Information Systems · doi:10.1057/ejis.2014.40 · Cited by 45
“…PCC agenda, an Internet-based personal electronic health record (HealthSpace) was not taken up in any significant numbers, partly because of its limited functionality and lack of integration with wider care package but also due to lack of interest on the part of citizens (Greenhalgh et al., 2010a).”
BackgroundGordon, P. C., Camhi, E., Hesse, R., Odlum, M. L., Schnall, R., Rodriguez, M., Valdez, E., & Henry, S. B. (2012) · International Journal of Medical Informatics · doi:10.1016/j.ijmedinf.2012.06.004 · Cited by 45
Lee, S., Kim, J., Kwon, Y., Kim, T., & Cho, S. (2022) · Journal of Medical Internet Research · doi:10.2196/29108 · Cited by 47
“As a result, we contribute business process optimization, cost reduction, patient outcome improvements, and enhanced compliance in the health care field [57,58].”
BackgroundLau, A. Y. S., Arguel, A., Dennis, S. M., Liaw, S., & Coiera, E. W. (2015) · Journal of Medical Internet Research · doi:10.2196/jmir.4734 · Cited by 44
Primary Care Patient Records in the United Kingdom: Past, Present, and Future Research Priorities
McMillan, B., Eastham, R., Brown, B. C., Fitton, R., & Dickinson, D. (2018) · Journal of Medical Internet Research · doi:10.2196/11293 · Cited by 44
An Open Science Approach to Artificial Intelligence in Healthcare
Paton, C., & Kobayashi, S. (2019) · Yearbook of Medical Informatics · doi:10.1055/s-0039-1677898 · Cited by 43
“Implementation research shows that even if new medical technologies work “in the lab”, they might not be readily transferable to real world clinical practice [27].”
BackgroundPersonal Electronic Health Records: Understanding User Requirements and Needs in Chronic Cancer Care
Baudendistel, I., Winkler, E. C., Kamradt, M., Längst, G., Eckrich, F., Heinze, O., Bergh, B., Szécsényi, J., & Ose, D. J. (2015) · Journal of Medical Internet Research · doi:10.2196/jmir.3884 · Cited by 42
“Experiences from nationwide approaches such as the National Health Service implemented personal electronic health record HealthSpace (England) show that it failed due to a lack of usefulness and user friendliness, as well as poor alignment to users’ expectations and self-management practices [9].”
Banfield, M., Gardner, K., McRae, I., Gillespie, J., Wells, R. W., & Yen, L. E. (2013) · BMC Family Practice · doi:10.1186/1471-2296-14-34 · Cited by 41
“Greenhalgh and colleagues have argued that systems that are not aligned with these needs, but designed top down according to static standard protocols, are unlikely to be taken up by patients and clinicians [20].”
BackgroundThe patients’ active role in managing a personal electronic health record: a qualitative analysis
Baudendistel, I., Winkler, E. C., Kamradt, M., Brophy, S., Längst, G., Eckrich, F., Heinze, O., Bergh, B., Szécsényi, J., & Ose, D. J. (2015) · Supportive Care in Cancer · doi:10.1007/s00520-015-2620-1 · Cited by 41
“Problems with accessibility regarding ICTs and the need for overcoming accessibility barriers are often mentioned in literature [22, 33, 34].”
BackgroundPrivacy-Preserving Tensor Factorization for Collaborative Health Data Analysis
Ma, J., Zhang, Q., Lou, J., Ho, J. C., Xiong, L., & Jiang, X. (2019) · Proceedings of the 28th ACM International Conference on Information and Knowledge Management · doi:10.1145/3357384.3357878 · Cited by 51
“Recent studies have suggested that the integration of health records can provide more benefits [12], which motivated the application of federated tensor learning framework [20].”
BackgroundA Blockchain Based Decentralized Identifiers for Entity Authentication in Electronic Health Records
Manoj, T., Makkithaya, K., & Narendra, V. G. (2022) · Cogent Engineering · doi:10.1080/23311916.2022.2035134 · Cited by 47
“Compared with the conventional paper-based system, EHRs offer ease of use, flexible record keeping and reduced operational costs (Greenhalgh et al., 2010).”
BackgroundMonkman, H., & Kushniruk, A. W. (2015) · Knowledge Management & E-Learning An International Journal · doi:10.34105/j.kmel.2015.07.036 · Cited by 39
“Furthermore, based on this analysis, Greenhalgh and colleagues argues that future projects of this nature aimed at consumers and the general population should be developed by applying user-centered methods, taking user literacy needs into account (Greenhalgh et al., 2010).”
MethodEmani, S., Peters, E. M., Desai, S. P., Karson, A. S., Lipsitz, S. R., LaRocca, R., Stone, J., Suric, V., Wald, J. S., Wheeler, A., et al. (2018) · BMJ Health & Care Informatics · doi:10.14236/jhi.v25i3.991 · Cited by 41
Mullins, A. K., O’Donnell, R., Mousa, M. M., Rankin, D., Ben‐Meir, M., Boyd-Skinner, C., & Skouteris, H. (2020) · Journal of Medical Systems · doi:10.1007/s10916-020-01660-0 · Cited by 38
Rapid progress or lengthy process? electronic personal health records in mental health
Ennis, L., Rose, D. S., Callard, F. J., Denis, M., & Wykes, T. (2011) · BMC Psychiatry · doi:10.1186/1471-244x-11-117 · Cited by 38
Byrd, T. F., Kim, J. S., Yeh, C., Lee, J. J., & O’Leary, K. J. (2021) · Journal of Biomedical Informatics · doi:10.1016/j.jbi.2021.103749 · Cited by 39
Motivations of nurses who migrate to C anada as domestic workers
Salami, B. O., Nelson, S., Hawthorne, L., Muntaner, C., & Hall, L. M. (2014) · International Nursing Review · doi:10.1111/inr.12125 · Cited by 36
Scheder-Bieschin, J., Blümke, B., de Buijzer, E., Cotte, F., Echterdiek, F., Nacsa, J., Ondrésik, M., Ott, M., Paul, G., Schilling, T., et al. (2021) · JMIR Formative Research · doi:10.2196/28199 · Cited by 40
Patient portal implementation: resident and attending physician attitudes.
Keplinger, L. E., Koopman, R. J., Mehr, D. R., Kruse, R. L., Wakefield, D. S., Wakefield, B. J., & Canfield, S. M. (2013) · PubMed · Cited by 35
Measuring Health Literacy Levels of a Patient Portal Using the CDC’s Clear Communication Index
Alpert, J. M., Desens, L., Krist, A. H., Aycock, R. A., & Kreps, G. L. (2016) · Health Promotion Practice · doi:10.1177/1524839916643703 · Cited by 36
Baudendistel, I., Winkler, E. C., Kamradt, M., Brophy, S., Längst, G., Eckrich, F., Heinze, O., Bergh, B., Szécsényi, J., & Ose, D. J. (2016) · European Journal of Cancer Care · doi:10.1111/ecc.12429 · Cited by 35
“Closely related to this issue was also online security (Earnest et al. 2004; Pyper et al. 2004; Honeyman et al. 2005; Greenhalgh et al. 2010).”
A security approach for health care information systems
Chiuchisan, I., Balan, D. G., Geman, O., Chiuchisan, I., & Gordin, I. (2017) · E-Health and Bioengineering Conference (EHB) · doi:10.1109/ehb.2017.7995525 · Cited by 34
Metadata
- Authors
- Greenhalgh, T., Hinder, S., Stramer, K., Bratan, T., & Russell, J.
- Affiliations
- Queen Mary University of London (GB)
- University College London (GB)
- Corresponding author
- Greenhalgh, T.
- Venue
- BMJ
- Publisher
- BMJ
- Published
- 2010-11-16
- Volume
- 341
- Issue
- nov16 1
- Pages
- c5814-c5814
- ISSN
- 0007-1447 (ISSN-L)
- 0959-8138
- 1468-5833
- PMC
- PMC2982892
- OpenAlex
- W2053939792
- Cited by
- 343
- References
- 55
- Citations by year
- 2026: 3 · 2025: 10 · 2024: 13 · 2023: 14 · 2022: 16 · 2021: 25 · 2020: 21 · 2019: 24 · 2018: 26 · 2017: 35 · 2016: 31 · 2015: 27 · 2014: 29 · 2013: 29 · 2012: 21
- FWCI
- 40.54
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- cc-by-nc
- Locations
- BMJ (publishedVersion, cc-by-nc)
- PubMed Central (publishedVersion, cc-by-nc)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Health Professions › Health Information Management › Electronic Health Records Systems
- Social Sciences › Business, Management and Accounting › Management Information Systems › Information Systems Theories and Implementation
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Keywords
- technology adoption, non-adoption, patient and caregiver experiences, socio-technical approach, patient empowerment, self-management, user-centered design, patient-clinician communication, health information needs, health literacy, critical discourse analysis, patient-centered care
- MeSH terms
- England, Health Policy, Humans, Patient Acceptance of Health Care, Patient Participation, Software, State Medicine, Internet, Electronic Mail, Electronic Health Records
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