A Systematic Review of Patient-Facing Visualizations of Personal Health Data

OBJECTIVES  As personal health data are being returned to patients with increasing frequency and volume, visualizations are garnering excitement for their potential to facilitate patient interpretation. Evaluating these visualizations is important to ensure that patients are able to understand and, when appropriate, act upon health data in a safe and effective manner. The objective of this systematic review was to review and evaluate the state of the science of patient-facing visualizations of personal health data. METHODS  We searched five scholarly databases (PubMed, Embase, Scopus, ACM Digital Library [Association for Computing Machinery Digital Library], and IEEE Computational Index [Institute of Electrical and Electronics Engineers Computational Index]) through December 1, 2018 for relevant articles. We included English-language articles that developed or tested one or more patient-facing visualizations for personal health data. Three reviewers independently assessed quality of included articles using the Mixed methods Appraisal Tool. Characteristics of included articles and visualizations were extracted and synthesized. RESULTS  In 39 articles included in the review, there was heterogeneity in the sample sizes and methods for evaluation but not sample demographics. Few articles measured health literacy, numeracy, or graph literacy. Line graphs were the most common visualization, especially for longitudinal data, but number lines were used more frequently in included articles over past 5 years. Article findings suggested more patients understand the number lines and bar graphs compared with line graphs, and that color is effective at communicating risk, improving comprehension, and increasing confidence in interpretation. CONCLUSION  In this review, we summarize types and components of patient-facing visualizations and methodologies for development and evaluation in the reviewed articles. We also identify recommendations for future work relating to collecting and reporting data, examining clinically actionable boundaries for diverse data types, and leveraging data science. This work will be critically important as patient access of their personal health data through portals and mobile devices continues to rise.

[1]  Andrea Lowe-Strong,et al.  Monitoring of symptoms and interventions associated with multiple sclerosis. , 2005, Studies in health technology and informatics.

[2]  Saif Khairat,et al.  Tracking and Visualizing Headache Trends on a Mobile or Desktop Website , 2013, MedInfo.

[3]  Robert Hoyt,et al.  Qualitative and Quantitative Analysis of Patients' Perceptions of the Patient Portal Experience with OpenNotes , 2019, Applied Clinical Informatics.

[4]  Gillian R. Hayes,et al.  Challenges of integrating patient-centered data into clinical workflow for care of high-risk infants , 2014, Personal and Ubiquitous Computing.

[5]  J. Frost,et al.  Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data , 2008, Journal of medical Internet research.

[6]  Vimla L. Patel,et al.  Clinical Information Needs in Context: An Observational Study of Clinicians While Using a Clinical Information System , 2003, AMIA.

[7]  P. Munkholm,et al.  Using eHealth strategies in delivering dietary and other therapies in patients with irritable bowel syndrome and inflammatory bowel disease , 2017, Journal of gastroenterology and hepatology.

[8]  Jacqueline Merrill,et al.  Converging and diverging needs between patients and providers who are collecting and using patient-generated health data: an integrative review , 2018, J. Am. Medical Informatics Assoc..

[9]  M. Galesic,et al.  Graph Literacy , 2011, Medical decision making : an international journal of the Society for Medical Decision Making.

[10]  J. Baumhauer Patient-Reported Outcomes - Are They Living Up to Their Potential? , 2017, The New England journal of medicine.

[11]  Jeana Frost,et al.  Facilitating narrative medical discussions of type 1 diabetes with computer visualizations and photography. , 2006, Patient education and counseling.

[12]  Tung Le,et al.  Designing mobile support for glycemic control in patients with diabetes , 2010, J. Biomed. Informatics.

[13]  J. Ioannidis,et al.  The PRISMA Statement for Reporting Systematic Reviews and Meta-Analyses of Studies That Evaluate Health Care Interventions: Explanation and Elaboration , 2009, Annals of Internal Medicine [serial online].

[14]  P. Pluye,et al.  Testing the reliability and efficiency of the pilot Mixed Methods Appraisal Tool (MMAT) for systematic mixed studies review. , 2012, International journal of nursing studies.

[15]  E. Boyko,et al.  Brief questions to identify patients with inadequate health literacy. , 2004, Family medicine.

[16]  Shobha Phansalkar,et al.  Use of verbal protocol analysis for identification of ADE signals , 2006, AMIA.

[17]  A. Jadad,et al.  What Is eHealth (3): A Systematic Review of Published Definitions , 2005, Journal of medical Internet research.

[18]  Suzanne Bakken,et al.  Style Guide: An Interdisciplinary Communication Tool to Support the Process of Generating Tailored Infographics From Electronic Health Data Using EnTICE3 , 2015, EGEMS.

[19]  G. Ginsburg,et al.  Examining the impact of genetic testing for type 2 diabetes on health behaviors: study protocol for a randomized controlled trial , 2012, Trials.

[20]  N. Elder,et al.  "But what does it mean for me?" Primary care patients' communication preferences for test results notification. , 2012, Joint Commission journal on quality and patient safety.

[21]  Jessica S. Ancker,et al.  Good intentions are not enough: how informatics interventions can worsen inequality , 2018, J. Am. Medical Informatics Assoc..

[22]  Terhilda Garrido,et al.  Improved quality at Kaiser Permanente through e-mail between physicians and patients. , 2010, Health affairs.

[23]  E. Bantug,et al.  Making a picture worth a thousand numbers: recommendations for graphically displaying patient-reported outcomes data , 2018, Quality of Life Research.

[24]  Edward T. Cokely,et al.  Designing Visual Aids That Promote Risk Literacy: A Systematic Review of Health Research and Evidence-Based Design Heuristics , 2017, Hum. Factors.

[25]  J. Alison,et al.  Feasibility and Acceptability of an Internet-Based Program to Promote Physical Activity in Adults With Cystic Fibrosis , 2015, Respiratory Care.

[26]  Harry Hochheiser,et al.  Evaluating visual analytics for health informatics applications: a systematic review from the American Medical Informatics Association Visual Analytics Working Group Task Force on Evaluation , 2019, J. Am. Medical Informatics Assoc..

[27]  L. Tarassenko,et al.  A real-time, mobile phone-based telemedicine system to support young adults with type 1 diabetes. , 2005, Informatics in primary care.

[28]  Gillian R. Hayes,et al.  Integrating Patient-Generated Health Data Into Clinical Care Settings or Clinical Decision-Making: Lessons Learned From Project HealthDesign , 2016, JMIR human factors.

[29]  J. Kvedar,et al.  Diabetes Connected Health: A Pilot Study of a Patient- and Provider-Shared Glucose Monitoring Web Application , 2009, Journal of diabetes science and technology.

[30]  Hsuanwei Michelle Chen An Overview of Information Visualization , 2017 .

[31]  Youjeong Kang,et al.  Visualization approaches to support healthy aging: A systematic review , 2016, BMJ Health & Care Informatics.

[32]  Steven K. Feiner,et al.  Leveraging Patient-Reported Outcomes Using Data Visualization , 2018, Applied Clinical Informatics.

[33]  Michelle L. Rogers,et al.  Research Paper: Usability Testing Finds Problems for Novice Users of Pediatric Portals , 2009, J. Am. Medical Informatics Assoc..

[34]  Elizabeth M. Heitkemper,et al.  Structured scaffolding for reflection and problem solving in diabetes self-management: qualitative study of mobile diabetes detective , 2016, J. Am. Medical Informatics Assoc..

[35]  J. Greenslade,et al.  Review article: Staff perception of the emergency department working environment: Integrative review of the literature , 2016, Emergency medicine Australasia : EMA.

[36]  Signe Tretteteig,et al.  The influence of day care centres for people with dementia on family caregivers: an integrative review of the literature , 2016, Aging & mental health.

[37]  Stephen S Intille,et al.  To Track or Not to Track: User Reactions to Concepts in Longitudinal Health Monitoring , 2006, Journal of medical Internet research.

[38]  Kevin W. Kron,et al.  Core Components for a Clinically Integrated mHealth App for Asthma Symptom Monitoring , 2017, Applied Clinical Informatics.

[39]  Michael A. Kallen,et al.  A technical solution to improving palliative and hospice care , 2011, Supportive Care in Cancer.

[40]  Georgy Kopanitsa,et al.  Evaluation Study for an ISO 13606 Archetype Based Medical Data Visualization Method , 2015, Journal of Medical Systems.

[41]  K. Rayner The 35th Sir Frederick Bartlett Lecture: Eye movements and attention in reading, scene perception, and visual search , 2009, Quarterly journal of experimental psychology.

[42]  Elizabeth L. Murnane,et al.  Supporting Accurate Interpretation of Self-Administered Medical Test Results for Mobile Health: Assessment of Design, Demographics, and Health Condition , 2018, JMIR human factors.

[43]  P. Ubel,et al.  Validation of the Subjective Numeracy Scale: Effects of Low Numeracy on Comprehension of Risk Communications and Utility Elicitations , 2007, Medical decision making : an international journal of the Society for Medical Decision Making.

[44]  S. Trent Rosenbloom,et al.  Design Sprint and Usability Testing of a Patient-facing, Diabetes Dashboard Embedded in a Patient Web Portal (Preprint) , 2017 .

[45]  Ann Blandford,et al.  Making sense of personal health information: Challenges for information visualization , 2013, Health Informatics J..

[46]  Stephanie Wilson,et al.  Identifying web usability problems from eye-tracking data , 2007 .

[47]  William B. Lober,et al.  A patient-centered system in a provider-centered world: challenges of incorporating post-discharge wound data into practice , 2016, J. Am. Medical Informatics Assoc..

[48]  Aaron M Scherer,et al.  Improving the Understanding of Test Results by Substituting (Not Adding) Goal Ranges: Web-Based Between-Subjects Experiment , 2018, Journal of medical Internet research.

[49]  Jacob Solomon,et al.  Graphics help patients distinguish between urgent and non-urgent deviations in laboratory test results , 2016, J. Am. Medical Informatics Assoc..

[50]  H. Lee,et al.  A Web-based mobile asthma management system , 2005, Journal of telemedicine and telecare.

[51]  Casey Garvey,et al.  Patient Use of Electronic Prescription Refill and Secure Messaging and Its Association With Undetectable HIV Viral Load: A Retrospective Cohort Study , 2017, AMIA.

[52]  Thomas S. Huang,et al.  A multidisciplinary approach to designing and evaluating Electronic Medical Record portal messages that support patient self-care , 2017, J. Biomed. Informatics.

[53]  Amary Mey,et al.  Motivations and Barriers to Treatment Uptake and Adherence Among People Living with HIV in Australia: A Mixed-Methods Systematic Review , 2017, AIDS and Behavior.

[54]  T. Mashamba-Thompson,et al.  Evidence on the prevalence, incidence, mortality and trends of human papilloma virus-associated cancers in sub-Saharan Africa: systematic scoping review , 2019, BMC Cancer.

[55]  Robert J. Schenk,et al.  Integration of Remote Blood Glucose Meter Upload Technology into a Clinical Pharmacist Medication Therapy Management Service , 2011, Journal of diabetes science and technology.

[56]  Laurence Baker,et al.  Application of Information Technology: Effect of an Internet-Based System for Doctor-Patient Communication on Health Care Spending , 2005, J. Am. Medical Informatics Assoc..

[57]  Philip R. O. Payne,et al.  Assessment of Life's Simple 7 in the primary care setting: the Stroke Prevention in Healthcare Delivery EnviRonmEnts (SPHERE) study. , 2014, Contemporary clinical trials.

[58]  A. Abernethy,et al.  Assessing the value of patient-generated data to comparative effectiveness research. , 2014, Health affairs.

[59]  Iain Buchan,et al.  Presentation of laboratory test results in patient portals: influence of interface design on risk interpretation and visual search behaviour , 2018, BMC Medical Informatics and Decision Making.

[60]  P. Pluye,et al.  A scoring system for appraising mixed methods research, and concomitantly appraising qualitative, quantitative and mixed methods primary studies in Mixed Studies Reviews. , 2009, International journal of nursing studies.

[61]  B. Lapin,et al.  Clinical Utility of Patient-Reported Outcome Measurement Information System Domain Scales: Thresholds for Determining Important Change After Stroke , 2019, Circulation. Cardiovascular quality and outcomes.

[62]  Tobias Isenberg,et al.  A Systematic Review on the Practice of Evaluating Visualization , 2013, IEEE Transactions on Visualization and Computer Graphics.

[63]  Noel T Brewer,et al.  Tables or Bar Graphs? Presenting Test Results in Electronic Medical Records , 2012, Medical decision making : an international journal of the Society for Medical Decision Making.

[64]  Aaron M Scherer,et al.  Effect of Harm Anchors in Visual Displays of Test Results on Patient Perceptions of Urgency About Near-Normal Values: Experimental Study , 2018, Journal of medical Internet research.

[65]  Gunnar Hartvigsen,et al.  Mobile phone-based pattern recognition and data analysis for patients with type 1 diabetes. , 2012, Diabetes technology & therapeutics.

[66]  Maichou Lor Color-encoding visualizations as a tool to assist a nonliterate population in completing health survey responses , 2018, Informatics for health & social care.

[67]  Xingda Qu,et al.  Presenting self-monitoring test results for consumers: the effects of graphical formats and age , 2018, J. Am. Medical Informatics Assoc..

[68]  Georgy Kopanitsa,et al.  Implementation of a Web Portal for Diabetes Patients Using Open Source Data Visualization Libraries , 2016, pHealth.

[69]  Jesus A. Gonzalez,et al.  Mobile Personal Health System for Ambulatory Blood Pressure Monitoring , 2013, Comput. Math. Methods Medicine.

[70]  Neil C. Evans,et al.  Integrating patient voices into health information for self-care and patient-clinician partnerships: Veterans Affairs design recommendations for patient-generated data applications , 2016, J. Am. Medical Informatics Assoc..

[71]  A. Lai,et al.  Present and Future Trends in Consumer Health Informatics and Patient-Generated Health Data , 2017, Yearbook of Medical Informatics.

[72]  Majid Sarrafzadeh,et al.  Feasibility of a Secure Wireless Sensing Smartwatch Application for the Self-Management of Pediatric Asthma , 2017, Sensors.

[73]  Sunmoo Yoon,et al.  Sometimes more is more: iterative participatory design of infographics for engagement of community members with varying levels of health literacy , 2016, J. Am. Medical Informatics Assoc..