Introduction

Chronic non-communicable disease is the leading cause of death worldwide, with over 40 million people dying each year from chronic disease and its associated complications.1 The deaths caused by chronic diseases, such as stroke, chronic respiratory disease, heart disease, cancer and diabetes, which are characterized by their long duration and generally slow progression, are projected to increase from 38 million in 2012 to 52 million by 2030.2 Due to the personal, social and economic impact, chronic disease management remains one of the biggest challenges currently facing the global healthcare community. Clinical practice has focused on the importance of patient-practitioner interaction, shared decision-making and active patient participation through self-management as responses to the increasing burden of chronic disease.3,4 Self-management of a chronic disease is defined as "the person with the chronic disease engaging in activities that protect and promote health, monitoring and managing the symptoms and signs of illness, managing the impact of illness on functioning, emotions and interpersonal relationships and adhering to treatment regimes."5^(p.1) This approach has led to improvements in clinical outcomes and health service efficiency, and a reduction in healthcare costs.6

One of the strategies to support self-management in patients with chronic disease is the use of electronic personal health records (e-PHRs).7 Electronic personal health records offer patients access to their medical records, recommend self-management tools and provide an innovative medium for communicating with healthcare providers.8 While all patients can potentially benefit from the use of e-PHRs,9-11 those patients with chronic conditions may receive greater benefits due to the increased need to record and access their health-related information on a regular basis and the requirement to actively self-manage their disease in conjunction with their health providers and caregivers.12-15 Electronic personal health records are defined as an "electronic application through which individuals can access, manage, and share their health information, and that of others for whom they are authorized, in a private, secure, and confidential environment."16^(p.13) Electronic personal health records operate through web-based platforms17 or portals,10 that are accessible with devices such as personal computers, mobile phones, laptops, tablets, personal digital assistants (PDAs) and other wireless devices.18 Electronic personal health records vary greatly in type and use.18 Basic applications allow patients to access shared health summaries, generate personal health notes, and maintain laboratory results, diagnostic imaging reports and hospital discharge information.17 More advanced applications enable integration of patient records with health providers' information systems, and allow patients, along with their providers, the ability to monitor, track and respond to changes in health status.19 Linking e-PHRs to a health facility's electronic medical record can enable disease tracking, which fosters collaboration and promotes continuity of care by providing and supporting an ongoing connection between patients and providers. This connection can promote and deliver early interventions when problems arise, potentially helping avoid hospitalization.20 Innovative software capabilities may include the ability to: set up auto generated email reminders, link to providers' online health information and databases, book and manage clinical appointments, and monitor and store health indicators such as blood pressure or weight.21

Although e-PHRs have variable designs and features,18,22 they share a similar goal of improving patients' engagement in their care.15 The e-PHR literature and research findings suggest that e-PHRs have the potential to empower patients in their shared decision making by allowing access to health information and communication tools, which in turn aids in self-care, improves clinical outcomes and reduces care costs.9,23 Other benefits include secure messaging, medication adherence reminders, symptom checking reminders, and more recently, the ability to collect and store data from personal sensors and mobile applications, such as accelerometers, wireless scales, wrist bands and smartwatches.18 Electronic personal health records provide a central point for health information integration that can reduce geographical barriers to patient care, particularly in fragmented healthcare systems and thus improve continuity of care and efficiency.21

Price et al.15 systematically reviewed 23 quantitative studies and found that chronic conditions such as diabetes, hypertension, asthma, acquired immunodeficiency syndrome, fertility management, glaucoma and hyperlipidemia can benefit from the use of e-PHRs. Benefits were seen in terms of care quality, access and work productivity. Specifically, the reviewers found e-PHRs valuable in promoting behavioral change through self-monitoring of disease indicators (e.g. blood pressure for hypertension, glucose for diabetes). In another study, Baudendistel et al.24 found e-PHRs are a useful tool for patients with colorectal cancer, primarily through improved information exchange with health providers. That study also highlighted how e-PHRs can be meaningfully used to meet specific disease needs when users are engaged in the technical development and evaluation process.

While there is evidence to demonstrate favorable outcomes from e-PHRs use, there are also a number of studies that show its limited or lack of effectiveness for certain chronic conditions. For example, Toscos et al.25 showed that e-PHRs had minimal impact for intermediate health outcomes (e.g. blood pressure, hemoglobin A1c [HbA1c]) and no significant impact for patient engagement among patients with coronary artery disease. Similarly, Wagner et al.26 examined the impact of e-PHRs on blood pressure monitoring in hypertensive patients, and also assessed outcomes related to patient empowerment, perception of quality of care, and use of medical services. Based on an intention-to-treat analysis, the researchers found that e-PHRs did not have an effect on blood pressure, patient knowledge, skill and confidence in health self-management, perceived quality of life or medical services utilization. In another study involving patients with breast cancer, Wiljer et al.27 demonstrated that e-PHR use had no impact on anxiety levels and perceptions of self-efficacy.

The variability in effects observed with e-PHR use may be related to the challenges and constraints associated with the adoption of e-PHRs.28 Lower than expected adoption rates continue to be attributed to issues of privacy and security, inequities related to information and communications technology access, type of e-PHR, and integration into care processes.18,29,30 People- and organizational-related factors such as age, health literacy, socioeconomic status and policy limitations pose additional challenges.31-33 Gagnon et al.34 identified knowledge (e.g. lack of awareness), system design (e.g. usability), user capacities and attitudes (e.g. patient health literacy, education and interest), environmental factors (e.g. government commitment), and legal and ethical issues (e.g. information control and custody) as factors that could influence e-PHR adoption. Recent studies have called for further research to understand how e-PHRs can be meaningfully used and how they can better support patient populations with specific conditions or diseases.13,35,36 Several authors recommend reorienting research to focus on understanding patients' experience and perceptions of e-PHRs as a necessary prerequisite to facilitate its optimal and sustainable use.37-39

Within today's health and social care systems, e-PHRs are viewed both as a tool for promoting self-management in patients with chronic disease and as a strategy to make healthcare more patient-centred.31 The benefits of e-PHRs show promise for supporting self-management, especially in facilitating communications among healthcare settings and information access, yet understanding of the patient role in the design, introduction, and use of e-PHRs, and related health and life outcomes is underdeveloped. To adopt e-PHRs and maximize any benefits for chronic disease management, current evidence indicates that e-PHRs must be aligned with patients' values and preferences.18,24,32,40

An initial limited search of PubMed and CINAHL identified several primary qualitative studies exploring the experiences of patients using e-PHRs for management of chronic conditions. These studies affirm positive attitudes and improved satisfaction related to use of e-PHRs for diabetes,41 hypertension42 and mental health self-management.43 Furthermore, where e-PHRs are linked with secure messaging, medication prescription refills, and the ability to share health information between patient and healthcare providers, patient satisfaction is enhanced.19 Fuji et al.44 explored patients' experiences in managing their diabetes and reported positive and negative findings in relation to privacy and security, and the ability to use the technology. In another qualitative study, Woollen et al.45 found that cardiac inpatients using e-PHRs experienced decreased anxiety, improved understanding of health conditions and demonstrated overall satisfaction with their healthcare. As the phenomenon of using e-PHRs in the context of chronic illness is relatively new,46 synthesis of qualitative research findings and aggregation of themes across studies may inform the appropriateness and acceptability of e-PHRs for self-management of chronic non-communicable diseases.

A preliminary search of CINAHL, PubMed, the JBI Database of Systematic Reviews and Implementation Reports, PROSPERO and the Cochrane Library found two systematic reviews which explored patient experiences of using personal health records. Sartain et al.47 reviewed 10 qualitative studies that investigated the perspectives of patients on the effectiveness or benefits of personal health records. The review identified three main themes: practical benefits of personal health records (e.g. owning a record to aid memory), psychological benefits (e.g. feeling empowered to ask questions, feeling in control of one's own health), and drawbacks (e.g. imposing unwanted responsibility and ineffectiveness). The focus of that review was the paper format of a patient-held record and therefore differs from the primary focus of this review. Sartain et al.47 acknowledged that, with the emergence of e-PHRs, different patient factors may affect uptake, including the safety and accessibility of electronically held personal information. In addition, the study context was broad, considering antenatal care, learning disability, mental health and other chronic diseases. In a more recent systematic review, Sakaguchi-Tang et al.48 explored the perspectives and experiences of e-PHR use from initial access to adoption amongst older adults. Electronic personal health records were found to help older adults better manage their health information and improve their communication with providers. Key facilitators for use were receiving technical assistance and recommendations from family and healthcare providers. Barriers to use were related to concerns regarding privacy and security, and to technological ability. That review specifically focused on older adults' experiences and did not consider e-PHRs for chronic disease self-management. Furthermore, the authors included both quantitative and qualitative studies, and did not undertake meta-aggregation of qualitative findings that would have enabled generating action statements for policy and practice.

The current systematic review seeks to address the gap in knowledge pertaining to understanding patients' experiences of using e-PHRs for self-management of chronic non-communicable diseases. These findings could assist in informing evidence-based practices for use of e-PHRs in chronic disease self-management. Therefore, the objective of this review is to systematically identify and synthesize all relevant qualitative findings on adult patients' experiences of using e-PHRs for chronic non-communicable disease self-management.

Review question

What are adult patients' experiences of using e-PHRs for chronic non-communicable disease self-management?

Inclusion criteria

Participants

The current review will consider qualitative studies that include adult patients (aged 18 years and over) reported to have a chronic non-communicable disease and who have used an e-PHR for self-management of that condition. Chronic disease is defined as a disease or condition that is ongoing, in contrast to acute conditions which resolve completely within a relatively short time period.2 Non-communicable diseases are conditions that are not passed from one person to another.2 Common chronic non-communicable diseases include stroke, chronic obstructive pulmonary disease, cardiovascular disease, cancer, diabetes mellitus, asthma, epilepsy, Parkinson's disease, Alzheimer's disease, arthritis and renal failure.2 In accordance with current guidelines, obesity (BMI greater than or equal to 30 kg/m²) is also considered a chronic disease,49 whereas being overweight but not obese (BMI less than 30 kg/m²) is not.2 This review will follow Murray et al.'s50 approach, which recognizes that it would be impossible to list all chronic diseases that can be included in the systematic review. Therefore, where there is any doubt as to whether a condition is a chronic disease, the decision will be discussed and agreed upon between the reviewers.

Phenomena of interest

This review will consider studies that explore adult patients' experiences of using e-PHRs to manage their chronic non-communicable diseases. Following the definition applied by Sakaguchi-Tang et al.,48 "experience" is defined as a person's perceptions of their interactions with e-PHRs. Experiences can include, but are not limited to: barriers and facilitators to use, benefits of use and adoption, and acceptance of and satisfaction with e-PHRs or features of those systems (e.g. using secure messaging or having access to electronic medical records).

As the terms electronic personal health records (e-PHRs), personal health record (PHR), electronic medical record (EMR), electronic health record (EHR) and patient portal lack precision and are used interchangeably within the literature,12,18 the basic criterion for inclusion in this review is that the electronic application allows patients access to their clinical data. The term "e-PHRs" has been adopted for use in this protocol.

Context

The systematic review will consider studies conducted in any setting or in any country.

Type of studies

This review will consider studies that focus on qualitative data including, but not limited to: designs such as phenomenology, grounded theory, ethnography, action research and qualitative descriptive studies.

Only studies published in the English language will be considered for inclusion in this review. The adoption of e-PHRs by health institutions commenced in the early 2000 s with the rapid emergence of technology use during that time.22 Therefore, studies published from 2000 onwards will be considered for inclusion in this review.

Methods

The proposed systematic review will be conducted in accordance with the JBI methodology for systematic reviews of qualitative evidence.51

Search strategy

The search strategy will aim to find both published and unpublished studies. An initial limited search of PubMed and CINAHL has been undertaken followed by analysis of the text words contained in the title and abstract, and of the index terms used to describe each article. This informed the development of a search strategy which will be tailored for each information source. A full search strategy for CINAHL is detailed in Appendix I. The reference list of all studies selected for critical appraisal will be screened for additional studies.

Information sources

The databases to be searched include: PubMed (NLM), CINAHL (EBSCOhost), Embase (Elsevier), PsycINFO (Ovid) and Scopus (Elsevier).

The search for unpublished studies will include: ProQuest Dissertations and Theses Global, Google Scholar, WorldWideScience.org and MedNar.

Study selection

Following the search, all identified citations will be collated and uploaded into EndNote X8.2 (Clarivate Analytics, PA, USA) and duplicates removed. Titles and abstracts will then be screened against the inclusion criteria for the review. Studies that meet or could potentially meet the inclusion criteria will be retrieved in full and their citation details imported into the JBI System for the Unified Management, Assessment and Review of Information (JBI SUMARI; Joanna Briggs Institute, Adelaide, Australia). The full text of selected citations will be assessed in detail against the inclusion criteria by two independent reviewers. Reasons for exclusion of full-text studies will be recorded and reported in the final systematic review. Included studies will undergo a process of critical appraisal. Any disagreements that arise between the reviewers at each stage of the study selection process will be resolved through discussion or with a third reviewer. The results of the search will be reported in full in the final report and presented in a Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) flow diagram.52

Assessment of methodological quality

Selected studies will be critically appraised by two independent reviewers for methodological quality using the JBI Critical Appraisal Checklist for Qualitative Research.51,53 Any disagreements that arise between reviewers will be resolved through discussion or with a third reviewer. The results of critical appraisal will be reported in narrative form and in a table. All studies, regardless of the results of their methodological quality, will undergo data extraction and synthesis. The quality of included studies will be considered in the analysis and will therefore be reflected in the findings and conclusion of the systematic review.51

Data extraction

Qualitative data will be extracted from studies included in the review using the standardized data extraction tool from JBI SUMARI. Data extraction will be carried out by the primary reviewer with verification by another reviewer to minimize bias and potential errors in data extraction.

The data extracted will include specific details about the population, context, culture, geographical location, study methods and phenomena of interest relevant to the review question and specific objectives. Findings, and their illustrations, will be extracted and assigned a level of credibility.54

Data synthesis

Qualitative research findings will, where possible, be pooled using JBI SUMARI with the meta-aggregation approach.51 This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings and categorizing these findings on the basis of similarity in meaning. These categories will then be subjected to a synthesis, in order to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible, the findings will be presented in narrative form.

Assessing confidence in the findings

The final synthesized findings will be graded according to the ConQual approach for establishing confidence in the output of qualitative research synthesis and presented in a Summary of Findings.53 The Summary of Findings will include the major elements of the review and details how the ConQual score is developed. Included in the table will be the title, population, phenomena of interest and context for the specific review. Each synthesized finding from the review will then be presented along with the type of research informing it, a score for dependability, credibility and the overall ConQual score.

Acknowledgments

The authors thank Ms Gail Mann, Policy Evaluation and Research Unit, Manchester Metropolitan University, United Kingdom, for support with manuscript review, and Vikki Langton for her advice on the development of the search strategy for this protocol.

This review forms a component of the requirements for the completion of a Master of Clinical Science for JE.

Funding

JE acknowledges the support received through the provision of an Australian Government Research Training Program Scholarship.

Appendix I: Search strategy for CINAHL (EBSCOhost)

References