Associations Between Engagement With an Online Health Community and Changes in Patient Activation and Health Care Utilization: Longitudinal Web-Based Survey

Abstract

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.

A Call for a Public Health Agenda for Social Media Research

“…Online patient communities may even impact health care costs. A longitudinal study of new enrollees of HealthUnlocked, a collection of online patient communities in the United Kingdom, revealed declines in emergency room visits [36]. Much more research is needed to fully understand the range of benefits people experience in these communities and how to amplify beneficial experiences.…”

Experiences of Using a Self-management Mobile App Among Individuals With Heart Failure: Qualitative Study

“…There is growing evidence that supports patient activation to guide interventions and assist in implementing strategies to activate individuals for self-management [ 4 , 5 ]. Previous studies have linked patient activation with positive health outcomes, such as decreased health care utilization [ 6 , 7 ], reducing symptoms [ 8 , 9 ], and improving quality of life [ 10 ].…”

Superusers’ Engagement in Asthma Online Communities: Asynchronous Web-Based Interview Study

“…Interestingly, a recent study indicated that patients gained empowerment through OHCs, which was positively related to patient commitment to the physician and to patient compliance with the proposed treatment [ 2 ]. Moreover, there is evidence that users who are high engagers (such as superusers who are themselves patients) exhibit the greatest improvement in patient activation measure (PAM; a measure that captures the extent to which people feel engaged and confident in taking care of their condition) in HealthUnlocked OHCs, even if the average change in PAM across all levels of engagement is not clinically meaningful [ 39 ].…”