JMIR Publications

ABSTRACT

Background:

e-Health interventions such as patient portals and personal health records, also known as patient-centered digital health records, can engage and empower individuals with chronic health conditions. Highly engaged patients have improved disease knowledge, self-management skills, and clinical outcomes.

Objective:

To systematically review the effects of patient-centered digital health records on clinical and patient-reported outcomes, healthcare utilization, and satisfaction among patients with chronic conditions, and to assess the feasibility and acceptability of using these interventions.

Methods:

We searched MEDLINE, Cochrane, CINAHL, EMBASE and PsycINFO databases between January 2000 and December 2020. PRISMA guidelines were followed. Eligible studies were those evaluating digital health records intended for non-hospitalized adult or pediatric patients with a chronic condition. Patients with a high disease burden were a subgroup of interest. Primary outcomes included clinical and patient-reported health outcomes and healthcare utilization. Secondary outcomes included satisfaction, feasibility and acceptability. JBI critical appraisal tools were used for quality assessment. Two reviewers screened titles/abstracts and full-texts. Associations between health record use and outcomes were categorized as: ‘beneficial’, ‘neutral/clinically non-relevant’ or ‘undesired’.

Results:

Of 7242 unique records examined, 79 articles met the eligibility criteria, with a total of 1,489,756 participants across all studies. Most commonly studied disease included diabetes mellitus (44%; 35), cardiopulmonary conditions (25%; 20), and hematology-oncology conditions (16%; 13). A third of studies were randomized controlled trials (30%; 24). Sixteen studies (20%) were of high methodological quality. Reported outcomes varied across studies. Beneficial effects of patient-centered digital health records were most frequently reported in the category healthcare utilization on the ‘use of recommended care services’ (77%; 10 of 13 studies), on the patient-reported outcomes ‘patient engagement’ (56%; 15/27), ‘self-management/self-efficacy’ (56%; 10/18), and ‘treatment adherence’ (53%; 9/17), and on the clinical outcome ‘laboratory parameters’, including HbA1C and LDL (47%; 14/30). Beneficial effects on ‘health-related quality of life’ were seen in only 17% of studies (2/12). Patient satisfaction (93%; 26/28), feasibility (85%; 17/20) and acceptability (88%; 23/26) were evaluated positively. Most beneficial effects were reported for portals with secure messaging and prescription refill functionalities. Beneficial effects were less frequently observed among patients with a high disease burden, and among high quality studies. No unfavorable effects were reported.

Conclusions:

The use of patient-centered digital health records in non-hospitalized individuals with chronic health conditions is associated with considerable beneficial effects on healthcare utilization, self-management/self-efficacy, and treatment adherence. Yet, for firm conclusions, more studies of high methodological quality are needed. Clinical Trial: PROSPERO registration number: CRD42020213285