Background: Participation in online health communities (OHCs) is a popular trend in the United Kingdom. However, so far, no evidence exists to indicate an association between participation in OHCs and improved health outcomes.
Objective: This study aimed to (1) determine changes in patient activation over 3 months in new users of an OHC, (2) describe patterns of engagement with an OHC, (3) examine whether patients' characteristics at baseline were associated with subsequent patterns of engagement, and (4) determine if patterns of engagement during the 3 months were associated with changes in patient activation, health care utilization, and health status.
Methods: Active new OHC users on HealthUnlocked (HU) were surveyed to measure demographics, levels of patient activation (describing a person's confidence in managing their own health; scale 0-100 with 4 categories), health care utilization, and health status using a Web-based survey at baseline and 3 months. Patient activation at baseline and 3 months was compared (aim 1). Alongside, for a sample of HU users and survey responders, daily OHC website usage data were automatically captured. This was used to identify clusters of engagement with HU (aim 2). For survey responders, baseline characteristics, patient activation, health care utilization, and health status were compared at baseline and 3 months, overall, and between engagement clusters using t tests and chi-square tests (aims 3 and 4).
Results: In 329 people who completed both surveys, baseline activation was most frequently level 3, described as taking action but still lacking confidence. At follow-up, a change of 2.6 points was seen, with the greatest change seen in those at lowest baseline activation levels. In addition, 4 clusters of engagement were identified: low, medium, high, and very high, who were active on HU for a mean of 4, 12, 29, and 59 days, respectively. Survey responders were more commonly high or very high engagers. Baseline activation was highest in low and very high engagers. Overall activation increased over time in all engagement groups. Very high engagers had the greatest improvement in activation (5 points), although the average change was not above what is considered clinically meaningful for any group. Fewer accident and emergency visits were seen at follow-up in those with higher engagement, although this trend was not seen for other health care utilization measures. There was no change in health status at 3 months.
Conclusions: This observational study provides some insight into how patterns of engagement with OHCs are associated with changes in patient activation, health care utilization, and health status. Over 3 months, overall, the change in activation was not clinically significant, and there were some indications that OHCs may be of benefit to particular groups. However, the study limitations prevent firm conclusions about causal relationships.
Keywords: chronic disease; digital health; health information exchanges; internet; online support groups; peer support; peer-to-peer support; self-management.
©Ruth E Costello, Amrutha Anand, Matt Jameson Evans, William G Dixon. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 29.08.2019.