Mixed Methods for Research on Support Networks of People Experiencing Chronic Illness and Social Marginalization.

Substantial research has focused on how social networks help individuals navigate the illness experience. Sociologists have begun to theorize beyond the binary of strong and weak social network ties (e.g., compartmental, elastic, and disposable ties), citing the social, economic, and health conditions that shape their formation. However, limited research has employed mixed social network methods, which we argue is especially critical for examining the "non-traditional" social support networks of marginalized individuals. We employ quantitative social network methods (i.e., the egocentric network approach) in addition to in-depth interviews and observations, with a novel tool for capturing network data about social groups, to surface these kinds of supportive relationships. Using the case of "nameless ties"-non-kin, non-provider ties who were unidentifiable by given name or were grouped by context or activity rather than individually distinguished-we show how mixed social network methods can illuminate supporters who are commonly overlooked when only using traditional social network analysis. We conclude with a proposal for mixed methods and group alter approaches to successfully observe liminal support ties that is ideal for research about individuals experiencing chronic disability, poverty, housing insecurity, and other forms of social marginalization.

Impact of Patient-Clinical Team Secure Messaging on Communication Patterns and Patient Experience: Randomized Encouragement Design Trial.

BACKGROUND: Although secure messaging (SM) between patients and clinical team members is a recommended component of continuous care, uptake by patients remains relatively low. We designed a multicomponent Supported Adoption Program (SAP) to increase SM adoption among patients using the Veterans Health Administration (VHA) for primary care. OBJECTIVE: Our goals were to (1) conduct a multisite, randomized, encouragement design trial to test the effectiveness of an SAP designed to increase patient engagement with SM through VHA's online patient portal (My HealtheVet [MHV]) and (2) evaluate the impact of the SAP and patient-level SM adoption on perceived provider autonomy support and communication. Patient-reported barriers to SM adoption were also assessed. METHODS: We randomized 1195 patients at 3 VHA facilities who had MHV portal accounts but had never used SM. Half were randomized to receive the SAP, and half served as controls receiving usual care. The SAP consisted of encouragement to adopt SM via mailed educational materials, proactive SM sent to patients, and telephone-based motivational interviews. We examined differences in SM adoption rates between SAP recipients and controls at 9 months and 21 months. Follow-up telephone surveys were conducted to assess perceived provider autonomy support and self-report of telephone communication with clinical teams. RESULTS: Patients randomized to the SAP had significantly higher rates of SM adoption than the control group (101/595, 17.0% vs 40/600, 6.7%; P<.001). Most adopters in the SAP sent their first message without a motivational interview (71/101, 70.3%). The 10-percentage point difference in adoption persisted a full year after the encouragement ended (23.7%, 142/600 in the SAP group vs 13.5%, 80/595 in the control group, P<.001). We obtained follow-up survey data from 49.54% (592/1195) of the participants. SAP participants reported higher perceived provider autonomy support (5.7 vs 5.4, P=.007) and less telephone use to communicate with their provider (68.8% vs 76.0%, P=.05), compared to patients in the control group. Patient-reported barriers to SM adoption included self-efficacy (eg, not comfortable using a computer, 24%), no perceived need for SM (22%), and difficulties with portal password or login (17%). CONCLUSIONS: The multicomponent SAP was successful in increasing use of SM 10 percentage points above standard care; new SM adopters reported improved perceptions of provider autonomy support and less use of the telephone to communicate with their providers. Still, despite the encouragement and technical assistance provided through the SAP, adoption rates were lower than anticipated, reaching only 24% at 21 months (10% above controls). Common barriers to adoption such as limited perceived need for SM may be more challenging to address and require different interventions than barriers related to patient self-efficacy or technical difficulties. TRIAL REGISTRATION: ClinicalTrials.gov NCT02665468; https://clinicaltrials.gov/ct2/show/NCT02665468.

The Promise of Patient Portals for Individuals Living With Chronic Illness: Qualitative Study Identifying Pathways of Patient Engagement.

BACKGROUND: Patients play a critical role in managing their health, especially in the context of chronic conditions like diabetes. Electronic patient portals have been identified as a potential means to improve patient engagement; that is, patients' involvement in their care. However, little is known about the pathways through which portals may help patients engage in their care. OBJECTIVE: Our objective is to understand how an electronic patient portal facilitates patient engagement among individuals with diabetes. METHODS: This qualitative study employed semistructured telephone interviews of 40 patients living with diabetes since at least 2011, who had experienced uncontrolled diabetes, and had used secure messaging through a portal at least 4 times over 18 months. The interviews were recorded, transcribed, coded, and analyzed using primarily an inductive approach to identify how patients living with diabetes use an online health portal to support diabetes self-management. RESULTS: Overall, patients who used the portal reported feeling engaged in their health care. We identified four pathways by which the portal facilitates patient engagement and some challenges. The portal provides a platform that patients use to (1) better understand their health by asking questions about new symptoms, notes, or labs, (2) prepare for medical appointments by reviewing labs and notes, (3) coordinate care between VA (Veterans Affairs) and non-VA health care teams, and (4) reach out to providers to request help between visits. Several patients reported that the portal helped improve the patient-provider relationship; however, aspects of the portal design may hinder engagement for others. Patients reported challenges with both secure messaging and access to medical records that had negative impacts on their engagement. Benefits for patient engagement were described by many types of portal users with varying degrees of diabetes control. CONCLUSIONS: Patient portals support engagement by facilitating patient access to their health information and by facilitating patient-provider communication. Portals can help a wide range of users engage with their care.