Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress 2023 EHA Congress 2023 ASCO Annual Meeting
Clinical Collections
Advances in Alzheimer’s

At a glance: The ONWARDS insulin icodec trials

A round-up of the ONWARDS phase 3 clinical trials evaluating the novel weekly insulin icodec in people with diabetes.
ADVANCED SEARCH
Log in
Top
BMC Medical Informatics and Decision Making
Published in: BMC Medical Informatics and Decision Making 1/2016

Open Access 01-12-2016 | Research article

Understanding factors affecting patient and public engagement and recruitment to digital health interventions: a systematic review of qualitative studies

Authors: Siobhan O’Connor, Peter Hanlon, Catherine A. O’Donnell, Sonia Garcia, Julie Glanville, Frances S. Mair

Published in: BMC Medical Informatics and Decision Making | Issue 1/2016

Login to get access

Abstract

Background

Numerous types of digital health interventions (DHIs) are available to patients and the public but many factors affect their ability to engage and enrol in them. This systematic review aims to identify and synthesise the qualitative literature on barriers and facilitators to engagement and recruitment to DHIs to inform future implementation efforts.

Methods

PubMed, MEDLINE, CINAHL, Embase, Scopus and the ACM Digital Library were searched for English language qualitative studies from 2000 – 2015 that discussed factors affecting engagement and enrolment in a range of DHIs (e.g. ‘telemedicine’, ‘mobile applications’, ‘personal health record’, ‘social networking’). Text mining and additional search strategies were used to identify 1,448 records. Two reviewers independently carried out paper screening, quality assessment, data extraction and analysis. Data was analysed using framework synthesis, informed by Normalization Process Theory, and Burden of Treatment Theory helped conceptualise the interpretation of results.

Results

Nineteen publications were included in the review. Four overarching themes that affect patient and public engagement and enrolment in DHIs emerged; 1) personal agency and motivation; 2) personal life and values; 3) the engagement and recruitment approach; and 4) the quality of the DHI. The review also summarises engagement and recruitment strategies used. A preliminary DIgital Health EnGagement MOdel (DIEGO) was developed to highlight the key processes involved. Existing knowledge gaps are identified and a number of recommendations made for future research. Study limitations include English language publications and exclusion of grey literature.

Conclusion

This review summarises and highlights the complexity of digital health engagement and recruitment processes and outlines issues that need to be addressed before patients and the public commit to digital health and it can be implemented effectively. More work is needed to create successful engagement strategies and better quality digital solutions that are personalised where possible and to gain clinical accreditation and endorsement when appropriate. More investment is also needed to improve computer literacy and ensure technologies are accessible and affordable for those who wish to sign up to them.

Systematic review registration

International Prospective Register of Systematic Reviews CRD42015029846
Appendix
Available only for authorised users
Literature
1.
Georgsson M, Staggers N. Quantifying usability: an evaluation of a diabetes mHealth system on effectiveness, efficiency, and satisfaction metrics with associated user characteristics. J Am Med Inform. 2016;23:5–11.CrossRef
2.
3.
Mair FS, Haycox A, Williams T. A review of telemedicine cost-effectiveness studies. J Telemed Telecare. 2000;6:38–40.CrossRef
4.
May C, Mort M, Williams T, Mair F, Gask L. Health technology assessment in its local contexts: studies of telehealthcare. Soc Sci Med. 2003;57:697–710.CrossRefPubMed
5.
6.
Devlin AM, McGee-Lennon M, O’Donnell CA, Bouamrane M, Agbakoba R, O’Connor S, et al. Delivering Digital Health and Well-Being at Scale: Lessons Learned during the Implementation of the dallas Program in the United Kingdom. J Am Med Inform Assoc. 2016;23:48–59.CrossRefPubMed
7.
Bailey SC, Belter LT, Pandit AU, Carpenter DM, Carlos E, Wolf MS. The availability, functionality, and quality of mobile applications supporting medication self-management. J Am Med Inform Assoc. 2014;21:542–6.CrossRefPubMed
8.
Moorhead SA, Hazlett DE, Harrison L, Carroll JK, Irwin A, Hoving C. A new dimension of health care: systematic review of the uses, benefits, and limitations of social media for health communication. J Med Internet Res. 2013;15, e85.CrossRefPubMedPubMedCentral
9.
Gorst SL, Armitage CJ, Brownsell S, Hawley MS. Home telehealth uptake and continued use among heart failure and chronic obstructive pulmonary disease patients: A systematic review. Ann Behav Med. 2014;48:323–36.CrossRefPubMedPubMedCentral
10.
Sanders C, Rogers A, Bowen R, Bower P, Hirani S, Cartwright M, et al. Exploring barriers to participation and adoption of telehealth and telecare within the Whole System Demonstrator trial: a qualitative study. BMC Health Serv Res. 2012;12:220.CrossRefPubMedPubMedCentral
11.
Miyamoto S, Henderson S, Young H, Ward D, Santillan V. Recruiting Rural Participants for a Telehealth Intervention on Diabetes Self‐Management. J Rural Health. 2013;29:69–77.CrossRefPubMed
12.
Lakerveld J, IJzelenberg W, Van Tulder MW, Hellemans IM, Rauwerda JA, Van Rossum AC, et al. Motives for (not) participating in a lifestyle intervention trial. BMC Med Res Methodol. 2008;8:17.CrossRefPubMedPubMedCentral
13.
Goel MS, Brown TL, Williams A, Cooper AJ, Hasnain-Wynia R, Baker DW. Patient reported barriers to enrolling in a patient portal. J Am Med Infor Assoc. 2011;18:i8–12.CrossRef
14.
O’Connor S, Mair FS, McGee-Lennon M, Bouamrane M, O’Donnell K. Engaging in large-scale digital health technologies and services. What factors hinder recruitment? Stud Health Technol Inform. 2015;210:306–10.PubMed
15.
16.
Woolf SH. The meaning of translational research and why it matters. JAMA. 2008;299:211–3.PubMed
17.
Varsi C, Gammon D, Wibe T, Ruland CM. Patients’ reported reasons for non-use of an internet-based patient-provider communication service: qualitative interview study. J Med Internet Res. 2013;15, e246.CrossRefPubMedPubMedCentral
18.
Jimbo M, Shultz CG, Nease DE, Fetters MD, Power D, Ruffin MT. Perceived barriers and facilitators of using a Web-based interactive decision aid for colorectal cancer screening in community practice settings: findings from focus groups with primary care clinicians and medical office staff. J Med Internet Res. 2012;15:e286.
19.
Mays N, Pope C, Popay J. Systematically reviewing qualitative and quantitative evidence to inform management and policy-making in the health field. J Health Serv Res Policy. 2005;10:6–20.CrossRefPubMed
20.
Hannes K, Booth A, Harris J, Noyes J. Celebrating methodological challenges and changes: reflecting on the emergence and importance of the role of qualitative evidence in Cochrane reviews. Systematic Reviews. 2013;2:84.CrossRefPubMedPubMedCentral
21.
Hardiker NR, Grant MJ. Factors that influence public engagement with eHealth: A literature review. Int J Med Inform. 2011;80:1–12.CrossRefPubMed
22.
O’Connor S, Hanlon P, Garcia S, Glanville J, O’Donell CA, Mair FS. Barriers and facilitators to engagement and recruitment to digital health interventions: protocol of a systematic review of qualitative studies. BMJ Open. 2016;6e010895.
23.
Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19:349–57.CrossRefPubMed
24.
Booth A, Hannes K, Harden A, Noyes J, Harris J, Tong A. COREQ (Consolidated Criteria for Reporting Qualitative Studies). In: Moher D, Altman DG, Schulz KF, Simera I, Wager E, editors. Guidelines for Reporting Health Research: A User's Manual. Oxford: Wiley; 2014. p. 214–26.
25.
Sandelowski M, Docherty S, Emden C. Focus on qualitative methods Qualitative metasynthesis: issues and techniques. Res Nurs Health. 1997;20:365–72.CrossRefPubMed
26.
27.
Atkins S, Lewin S, Smith H, Engel M, Fretheim A, Volmink J. Conducting a meta-ethnography of qualitative literature: lessons learnt. BMC Med Res Methodol. 2008;8:21.CrossRefPubMedPubMedCentral
28.
Popay J, Rogers A, Williams G. Rationale and Standards for the Systematic Review of Qualitative Literature in Health Services Research. Qual Health Res. 1998;8:341–51.CrossRefPubMed
29.
Dixon-Woods M, Sutton A, Shaw R, Miller T, Smith J, Young B, et al. Appraising qualitative research for inclusion in systematic reviews: a quantitative and qualitative comparison of three methods. J Health Serv Res Policy. 2007;12:42–7.CrossRefPubMed
30.
Ritchie J, Spencer L. Qualitative data analysis for applied policy research. In: Bryman A, Burgess R, editors. Analysing qualitative data. London: Routledge; 1994. p. 173–94.CrossRef
31.
Oliver SR, Rees RW, Clarke‐Jones L, Milne R, Oakley AR, Gabbay J, et al. A multidimensional conceptual framework for analysing public involvement in health services research. Health Expect. 2008;11:72–84.CrossRefPubMedPubMedCentral
32.
33.
May C, Finch T. Implementing, embedding, and integrating practices: an outline of normalization process theory. Sociology. 2009;43:535–54.CrossRef
34.
May CR, Mair F, Finch T, MacFarlane A, Dowrick C, Treweek S, et al. Development of a theory of implementation and integration: Normalization Process Theory. Implement Sci. 2009;4:29.CrossRefPubMedPubMedCentral
35.
Mair FS, May C, O’Donnell CA, Finch T, Sullivan F, Murray E. Factors that promote or inhibit the implementation of e-health systems: an explanatory systematic review. Bulletin of the World Health Organisation. 2012;90:357–64.CrossRef
36.
Gallacher K, Morrison D, Jani B, Macdonald S, May CR, Montori VM, et al. Uncovering Treatment Burden As A Key Concept For Stroke Care: A Systematic Review of Qualitative Research. PLoS Med. 2013;10, e1001473.CrossRefPubMedPubMedCentral
37.
38.
May CR, Eton DT, Boehmer K, Gallacher K, Hunt K, MacDonald S, et al. Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness. BMC Health Serv Res. 2014;14:1.CrossRef
39.
Gallacher K, May CR, Montori VM, Mair FS. Understanding patients’ experiences of treatment burden in chronic heart failure using normalization process theory. The Annals of Family Medicine. 2011;9:235–43.CrossRefPubMed
40.
Tong A, Flemming K, McInnes E, Oliver S, Craig J. Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Med Res Methodol. 2012;12:181.CrossRefPubMedPubMedCentral
41.
Bardus M, Blake H, Lloyd S, Suggs LS. Reasons for participating and not participating in a e-health workplace physical activity intervention: A qualitative analysis. Int J Workplace Health Man. 2014;7:229–46.CrossRef
42.
Lorimer K, McDaid L. Young men’s views toward the barriers and facilitators of Internet-based Chlamydia trachomatis screening: qualitative study. J Med Internet Res. 2013;15, e265.CrossRefPubMedPubMedCentral
43.
Lorimer K, Martin S, McDaid LM. The views of general practitioners and practice nurses towards the barriers and facilitators of proactive, internet-based chlamydia screening for reaching young heterosexual men. BMC Fam Pract. 2014;15:127.CrossRefPubMedPubMedCentral
44.
Middlemass J, Davy Z, Cavanagh K, Linehan C, Morgan K, Lawson S, et al. Integrating online communities and social networks with computerised treatment for insomnia: a qualitative study. Br J Gen Pract. 2012;62:e840–50.CrossRefPubMedPubMedCentral
45.
Beattie A, Shaw A, Kaur S, Kessler D. Primary‐care patients’ expectations and experiences of online cognitive behavioural therapy for depression: a qualitative study. Health Expect. 2009;12:45–59.CrossRefPubMedPubMedCentral
46.
Flynn D, Gregory P, Makki H. Expectations and experiences of eHealth in primary care: a qualitative practice-based investigation. Int J Med Inform. 2009;78:588–604.CrossRefPubMed
47.
Greenhalgh T, Wood GW, Bratan T, Stramer K, Hinder S. Patients’ attitudes to the summary care record and HealthSpace: qualitative study. BMJ. 2008;336:1290–5.CrossRefPubMedPubMedCentral
48.
Greenhalgh T, Hinder S, Stramer K, Bratan T, Russell J. Adoption, non-adoption, and abandonment of a personal electronic health record: case study of HealthSpace. BMJ. 2010;341:c5814.CrossRefPubMedPubMedCentral
49.
Hopp FP, Hogan MM, Woodbridge PA, Lowery JC. The use of telehealth for diabetes management: a qualitative study of telehealth provider perceptions. Implement Sci. 2007;2:14.CrossRefPubMedPubMedCentral
50.
Horvath KJ, Danilenko GP, Williams ML, Simoni J, Amico KR, Oakes JM, et al. Technology use and reasons to participate in social networking health websites among people living with HIV in the US. AIDS Behav. 2012;16:900–10.CrossRefPubMedPubMedCentral
51.
Speirs KE, Grutzmacher SK, Munger AL, Messina LA. Recruitment and retention in an SMS-based health education program: Lessons learned from Text2BHealthy. Health Inform J. 2015;1460458215577995.
52.
Fukuoka Y, Kamitani E, Bonnet K, Lindgren T. Real-time social support through a mobile virtual community to improve healthy behavior in overweight and sedentary adults: a focus group analysis. J Med Internet Res. 2011;13, e49.CrossRefPubMedPubMedCentral
53.
Im EO, Im Lee B, Chee W. “Shielded from the Real World”: Perspectives on Internet Cancer Support Groups by Asian Americans. Cancer Nurs. 2010;33, e10.CrossRefPubMedPubMedCentral
54.
Dasgupta K, Da Costa D, Pillay S, De Civita M, Gougeon R, Leong A, et al. Strategies to optimize participation in diabetes prevention programs following gestational diabetes: a focus group study. PLoS One. 2013;8, e67878.CrossRefPubMedPubMedCentral
55.
Hottes TS, Farrell J, Bondyra M, Haag D, Shoveller J, Gilbert M. Internet-based HIV and sexually transmitted infection testing in British Columbia, Canada: opinions and expectations of prospective clients. J Med Internet Res. 2012;14, e41.CrossRefPubMedPubMedCentral
56.
Shoveller J, Knight R, Davis W, Gilbert M, Ogilvie G. Online sexual health services: examining youth’s perspectives. Can J Public Health. 2012;103:14–8.PubMed
57.
Winkelman WJ, Leonard KJ, Rossos PG. Patient-perceived usefulness of online electronic medical records: employing grounded theory in the development of information and communication technologies for use by patients living with chronic illness. J Am Med Inform Assoc. 2005;12:306–14.CrossRefPubMedPubMedCentral
58.
Das A, Faxvaag A. What influences patient participation in an online forum for weight loss surgery? A qualitative case study. Interact J Med Res. 2014;3, e4.CrossRefPubMedPubMedCentral
59.
Trujillo Gómez JMT, Díaz-Gete L, Martín-Cantera C, Escurriola MF, Moreno ML, Leandro RB, et al. Intervention for Smokers through New Communication Technologies: What Perceptions Do Patients and Healthcare Professionals Have? A Qualitative Study. PLoS One. 2015;10, e0137415.CrossRefPubMedPubMedCentral
60.
Choi NG, DiNitto DM. The digital divide among low-income homebound older adults: Internet use patterns, eHealth literacy, and attitudes toward computer/Internet use. J Med Internet Res. 2013;15, e93.CrossRefPubMedPubMedCentral
61.
Selwyn N, Gorard S, Furlong J, Madden L. Older adults’ use of information and communications technology in everyday life. Ageing Soc. 2003;23:561–82.CrossRef
62.
Cashen MS, Dykes P, Gerber B. eHealth technology and Internet resources: barriers for vulnerable populations. J Cardiovas Nurs. 2004;19:209–14.CrossRef
63.
Kontos E, Blake KD, Chou WYS, Prestin A. Predictors of eHealth usage: insights on the digital divide from the Health Information National Trends Survey 2012. J Med Internet Res. 2014;16, e172.CrossRefPubMedPubMedCentral
64.
65.
66.
Patel MS, Asch DA, Volpp KG. Wearable devices as facilitators, not drivers, of health behavior change. JAMA. 2015;313:459–60.CrossRefPubMed
67.
Moher D, Pham B, Lawson ML, Klassen TP. The inclusion of reports of randomised trials published in languages other than English in systematic reviews. Health Technol Assess. 2003;7:1–90.CrossRefPubMed
68.
Huckvale K, Prieto JT, Tilney M, Benghozi PJ, Car J. Unaddressed privacy risks in accredited health and wellness apps: a cross-sectional systematic assessment. BMC Med. 2015;13:1.
69.
70.
Thompson D, Canada A, Bhatt R, Davis J, Plesko L, Baranowski T, et al. eHealth recruitment challenges. Eval Program Plan. 2006;29:433–40.CrossRef
71.
Kaplan AM, Haenlein M. Users of the world, unite! The challenges and opportunities of Social Media. Bus Horiz. 2010;53:59–68.CrossRef
72.
Crutzen R, Roosjen JL, Poelman J. Using Google Analytics as a process evaluation method for Internet-delivered interventions: an example on sexual health. Health Promot Int. 2013;28:36–42.CrossRefPubMed
73.
Carroll C, Patterson M, Wood S, Booth A, Rick J, Balain S. A conceptual framework for implementation fidelity. Implement Sci. 2007;2:1.CrossRef
74.
Hoffmann TC, Glasziou PP, Boutron I, Milne R, Perera R, Moher D, et al. Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide. BMJ. 2014;348:g1687.CrossRefPubMed
75.
76.
Laranjo L, Arguel A, Neves AL, Gallagher AM, Kaplan R, Mortimer N, et al. The influence of social networking sites on health behavior change: a systematic review and meta-analysis. J Am Med Inform Assoc. 2015;22:243–56.PubMed
77.
Sokol R, Fisher E. Peer Support for the Hardly Reached: A Systematic Review. Am J Public Health. 2016;106:e1–8.CrossRefPubMed
78.
Lauckner HM, Hutchinson SL, Lauckner H. Peer support for people with chronic conditions in rural areas: a scoping review. Rural Remote Health. 2016;16:3601.PubMed
79.
Zulman DM, Jenchura EC, Cohen DM, Lewis ET, Houston TK, Asch SM. How can eHealth technology address challenges related to multimorbidity? Perspectives from patients with multiple chronic conditions. J Gen Inter Med. 2015;30:1063–70.CrossRef
80.
Stewart A, Petch A, Curtice L. Moving towards integrated working in health and social care in Scotland: from maze to matrix. J Interprof Care. 2003;17:335–50.CrossRefPubMed
81.
Cameron A, Lart R, Bostock L, Coomber C. Factors that promote and hinder joint and integrated working between health and social care services: a review of research literature. Health Soc Care Community. 2014;22:225–33.CrossRefPubMed
82.
McHattie LS, Cumming G, French T. Transforming patient experience: health web science meets medicine 2.0. Medicine 20. 2014;3:e2.
83.
84.
Jones R. Development of a questionnaire and cross-sectional survey of patient ehealth readiness and ehealth inequalities. Medicine 20. 2013;2:e9.
85.
Benson T. Principles of health interoperability HL7 and SNOMED. London: Springer Science & Business Media; 2012.CrossRef
86.
Sachdeva S, Bhalla S. Semantic interoperability in standardized electronic health record databases. J Data Inform Quality. 2012;3:1.CrossRef
87.
Zhong ZJ. From access to usage: The divide of self-reported digital skills among adolescents. Comp & Educ. 2011;56:736–46.CrossRef
88.
Levine DM, Lipsitz SR, Linder JA. Trends in Seniors’ Use of Digital Health Technology in the United States, 2011–2014. JAMA. 2016;316:538–40.CrossRefPubMed
89.
Yamin CK, Emani S, Williams DH, Lipsitz SR, Karson AS, Wald JS, et al. The digital divide in adoption and use of a personal health record. Arch Intern Med. 2011;171:568–74.CrossRefPubMed
90.
Huckvale K, Adomaviciute S, Prieto JT, Leow MKS, Car J. Smartphone apps for calculating insulin dose: a systematic assessment. BMC Med. 2015;13:1.CrossRef
91.
Wicks P, Chiauzzi E. ‘Trust but verify’–five approaches to ensure safe medical apps. BMC Med. 2014;13:1.
92.
Boulos MNK, Brewer AC, Karimkhani C, Buller DB, Dellavalle RP. Mobile medical and health apps: state of the art, concerns, regulatory control and certification. Online J Public Health Inform. 2014;5:229.PubMedPubMedCentral
93.
94.
Treweek S, Mitchell E, Pitkethly M, Cook J, Kjeldstrom M, Taskila T, et al. Strategies to improve recruitment to randomised controlled trials. Cochrane Database Syst Rev. 2010;(Issue 4):Art. No.: MR000013. doi:10.​1002/​14651858.​MR000013.​pub5.
Metadata
Title
Understanding factors affecting patient and public engagement and recruitment to digital health interventions: a systematic review of qualitative studies
Authors
Siobhan O’Connor
Peter Hanlon
Catherine A. O’Donnell
Sonia Garcia
Julie Glanville
Frances S. Mair
Publication date
01-12-2016
Publisher
BioMed Central
Published in
BMC Medical Informatics and Decision Making / Issue 1/2016
Electronic ISSN: 1472-6947
DOI
https://doi.org/10.1186/s12911-016-0359-3

Other articles of this Issue 1/2016

BMC Medical Informatics and Decision Making 1/2016 Go to the issue

Debate

Rethinking the role and impact of health information technology: informatics as an interventional discipline

Research article

Integrating data from an online diabetes prevention program into an electronic health record and clinical workflow, a design phase usability study

Research article

Positive influence of short message service and voice call interventions on adherence and health outcomes in case of chronic disease care: a systematic review

Research article

Comparison of different approaches applied in Analytic Hierarchy Process – an example of information needs of patients with rare diseases

Research article

Operations research for resource planning and -use in radiotherapy: a literature review

Research article

Taxonomy of delays in the implementation of hospital computerized physician order entry and clinical decision support systems for prescribing: a longitudinal qualitative study