Providing Patients with Implantable Cardiac Device Data through a Personal Health Record: A Qualitative Study
06 June 2017
05 October 2017
14 December 2017 (online)
Background Patients at risk for sudden cardiac death or having suffered cardiac arrest may receive an implantable cardioverter defibrillator (ICD). This device provides monitoring and therapy for life-threatening heart rhythms. Remote monitoring of ICDs has decreased the time between abnormal heart rhythm events and clinic follow-up. Currently, the data transmitted from the device are reviewed and stored by the clinic, but patients do not have access to the data. While connecting patients directly with their ICD data has potential to enhance engagement in their care and improve health outcomes, patient attitudes and perceptions about receiving ICD data have not been explored.
Objective This research is the first demonstration of delivering ICD data to patients through a personal health record (PHR) using a novel technical framework. The objective of this study was to use a PHR interface as a technology probe to explore patients' experiences with directly receiving their ICD data from remote monitoring.
Methods We enrolled 21 patients with an ICD undergoing remote monitoring at a large outpatient cardiology clinic in Indiana, United States. Participants received their ICD data from remote monitoring through a PHR over 3 months. In-depth, semistructured interviews were conducted at 3 months and analyzed using thematic analysis.
Results Participants were 36 to 86 years old, mean age (SD) of 67 (14) years, predominately male (76%), and white (95%). Key themes were ICD questions and concerns, experiences with remote monitoring, PHR use, and feedback about the ICD data summary. The findings showed that overall, patients desired information that provides reassurance, is easy to understand, and is presented in a meaningful way.
Conclusion Sharing ICD data from remote monitoring requires adequate context and scaffolding to support patient understanding. Engaging patients with information that is useful and valuable to them through a PHR may require appropriate and individualized tailoring of information.
Keywordspersonal health records - remote monitoring - implantable cardioverter defibrillators - patient engagement - qualitative
Protection of Human and Animal Subjects
The study protocol and materials were submitted and approved by Parkview Health's Institutional Review Board, part of Parkview Health Systems in Indiana, United States.
- 1 Crossley GH, Boyle A, Vitense H, Chang Y, Mead RH. ; CONNECT Investigators. The CONNECT (Clinical Evaluation of Remote Notification to Reduce Time to Clinical Decision) trial: the value of wireless remote monitoring with automatic clinician alerts. J Am Coll Cardiol 2011; 57 (10) 1181-1189
- 2 Marcus AD, Weaver C. Heart gadgets test privacy-law limits. Wall St J 2012
- 3 Hugo Campos. Fighting for the right to open his heart data: Hugo Campos at TEDxCambridge 2011. Available at: https://www.youtube.com/watch?v=oro19-l5M8k&t=18
- 4 Skov MB, Johansen PG, Skov CS, Lauberg A. No news is good news: remote monitoring of implantable cardioverter-defibrillator patients. CHI'15 2015; 827-836
- 5 Andersen TO, Andersen PRD, Kornum AC, Larsen TM. Understanding patient experience: a deployment study in cardiac remote monitoring. Pervasive Health Conference 2017
- 6 Petersen HH, Larsen MC, Nielsen OW, Kensing F, Svendsen JH. Patient satisfaction and suggestions for improvement of remote ICD monitoring. J Interv Card Electrophysiol 2012; 34 (03) 317-324
- 7 Ottenberg AL, Swetz KM, Mueller LA, Gerhardson S, Mueller PS. “We as human beings get farther and farther apart”: the experiences of patients with remote monitoring systems. Heart Lung 2013; 42 (05) 313-319
- 8 Matlock DD. Big Brother is watching you: what do patients think about ICD home monitoring?. Circulation 2010; 122 (04) 319-321
- 9 Woods SS, Schwartz E, Tuepker A. , et al. Patient experiences with full electronic access to health records and clinical notes through the My HealtheVet Personal Health Record Pilot: qualitative study. J Med Internet Res 2013; 15 (03) e65
- 10 Jabour A, Jones JF. Facilitators and barriers to patients' engagements with personal health records: systematic review. International Conference on Universal Access in Human-Computer Interaction; 2013;472–481
- 11 Daley C, Allmandinger T, Heral L, Toscos T, Plant R, Mirro M. Engagement of ICD patients: direct electronic messaging of remote monitoring data via a personal health record. EP Lab Digest 2015;15(5). Available at https://www.eplabdigest.com/articles/Engagement-ICD-Patients-Direct-Electronic-Messaging-Remote-Monitoring-Data-Personal-Health
- 12 HealthIT.gov: What is a personal health record? May 2, 2013. Office of the National Coordinator for Health Information Technology. Available at: https://www.healthit.gov/providers-professionals/faqs/what-personal-health-record . Accessed July 15, 2017
- 13 ACC/HIMSS/RSNA. IHE Technical Framework Supplement - Implantable Cardiac Device Interrogation; 2006. Available at: http://www.ihe.net/Technical_Framework/upload/IHE-CARD-TF-Supp-IDCO_PC_2006-04-17.pdf
- 14 Berg B, Lune H, Lune H. Qualitative Research Methods for the Social Sciences, Vol. 5. Boston, MA: Pearson; 2004
- 15 Jaspers MW, Steen T, van den Bos C, Geenen M. The think aloud method: a guide to user interface design. Int J Med Inform 2004; 73 (11-12): 781-795
- 16 Strauss A, Corbin J. Basics of Qualitative Research. Newbury Park, CA: Sage; 1990
- 17 Bradley EH, Curry LA, Devers KJ. Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Serv Res 2007; 42 (04) 1758-1772
- 18 Kamphuis HC, de Leeuw JR, Derksen R, Hauer RN, Winnubst JA. Implantable cardioverter defibrillator recipients: quality of life in recipients with and without ICD shock delivery: a prospective study. Europace 2003; 5 (04) 381-389
- 19 Kuhl EA, Sears SF, Conti JB. Internet-based behavioral change and psychosocial care for patients with cardiovascular disease: a review of cardiac disease-specific applications. Heart Lung 2006; 35 (06) 374-382
- 20 Tang PC, Ash JS, Bates DW, Overhage JM, Sands DZ. Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. J Am Med Inform Assoc 2006; 13 (02) 121-126
- 21 Liu E. Barriers to remote monitoring in patients with implantable cardioverter defibrillators. Yale Medicine Thesis Digital Library (paper no. 1898); 2014. Available at: http://elischolar.library.yale.edu/ymtdl/1898
- 22 Longo DR, Schubert SL, Wright BA, LeMaster J, Williams CD, Clore JN. Health information seeking, receipt, and use in diabetes self-management. Ann Fam Med 2010; 8 (04) 334-340
- 23 Habibović M, Denollet J, Cuijpers P. , et al. E-health to manage distress in patients with an implantable cardioverter-defibrillator: primary results of the WEBCARE trial. Psychosom Med 2014; 76 (08) 593-602
- 24 Toscos T, Daley C, Heral L. , et al. Impact of electronic personal health record use on engagement and intermediate health outcomes among cardiac patients: a quasi-experimental study. J Am Med Inform Assoc 2016; 23 (01) 119-128
- 25 Brennan PF, Downs S, Casper G. Project HealthDesign: rethinking the power and potential of personal health records. J Biomed Inform 2010; 43 (5, Suppl): S3-S5
- 26 Ross SE, Johnson KB, Siek KA, Gordon JS, Khan DU, Haverhals LM. Two complementary personal medication management applications developed on a common platform: case report. J Med Internet Res 2011; 13 (03) e45
- 27 Siek KA, Ross SE, Khan DU, Haverhals LM, Cali SR, Meyers J. Colorado Care Tablet: the design of an interoperable Personal Health Application to help older adults with multimorbidity manage their medications. J Biomed Inform 2010; 43 (5, Suppl): S22-S26