Information and Referral Needs for Care Partners of Adults With Alzheimer’s Disease in Rural and Remote Communities

M, Longstreth; Slosser, Andrea; Barry, Robin A.; Carrico, Catherine; McKibbin, Christine L.

doi:10.1093/geroni/igy023.1160

Cited by 2 publications

(1 citation statement)

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“…Future research is needed to better identify what patients want from an HSS database to help them further refine their results and identify relevant HSSs to meet their needs. Although it has been argued that there is a need for comprehensive and centralized community information systems [ 51 ], keeping information and referral database content up to date is challenging [ 52 ]. Community information and referral service databases in the United States and Canada tend to be managed by libraries or other community service agencies offering formal and structured community information services.…”

Section: Discussionmentioning

confidence: 99%

A Web-Based Social Network Tool (GENIE) for Supporting Self-management Among High Users of the Health Care System: Feasibility and Usability Study

Valaitis¹,

Cleghorn²,

Vassilev³

et al. 2021

JMIR Form Res

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Background Primary care providers are well positioned to foster self-management through linking patients to community-based health and social services (HSSs). This study evaluated a web-based tool—GENIE (Generating Engagement in Network Involvement)—to support the self-management of adults. GENIE empowers patients to leverage their personal social networks and increase their access to HSSs. GENIE maps patients’ personal social networks, elicits preferences, and filters local HSSs from a community service directory based on patient’s interests. Trained volunteers (an extension of the primary care team) conducted home visits and conducted surveys related to life and health goals in the context of the Health TAPESTRY (Teams Advancing Patient Experience: Strengthening Quality) program, in which the GENIE tool was implemented. GENIE reports were uploaded to an electronic medical record for care planning by the team. Objective This study aims to explore patients’, volunteers’, and clinicians’ perceptions of the feasibility, usability, and perceived outcomes of GENIE—a tool for community-dwelling adults who are high users of the health care system. Methods This study involved 2 primary care clinician focus groups and 1 clinician interview (n=15), 1 volunteer focus group (n=3), patient telephone interviews (n=8), field observations that captured goal-action sequences to complete GENIE, and GENIE utilization statistics. The patients were enrolled in a primary care program—Health TAPESTRY—and Ontario’s Health Links Program, which coordinates care for the highest users of the health care system. NVivo 11 (QSR International) was used to support qualitative data analyses related to feasibility and perceived outcomes, and descriptive statistics were used for quantitative data. Results Most participants reported positive overall perceptions of GENIE. However, feasibility testing showed that participants had a partial understanding of the tool; volunteer facilitation was critical to support the implementation of GENIE; clinicians perceived their navigation ability as superior to that of GENIE supported by volunteers; and tool completion took 39 minutes, which made the home visit too long for some. Usability challenges included difficulties completing some sections of the tool related to medical terminology and unclear instructions, limitations in the quality and quantity of HSSs results, and minor technological challenges. Almost all patients identified a community program or activity of interest. Half of the patients (4/8, 50%) followed up on HSSs and added new members to their network, whereas 1 participant lost a member. Clinicians’ strengthened their understanding of patients’ personal social networks and needs, and patients felt less social isolation. Conclusions This study demonstrated the potential of GENIE, when supported by volunteers, to expand patients’ social networks and link them to relevant HSSs. Volunteers require training to implement GENIE for self-management support, which may help overcome the time limitations faced by primary care clinicians. Refining the filtering capability of GENIE to address adults’ needs may improve primary care providers’ confidence in using such tools.

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Section: Discussionmentioning

confidence: 99%

A Web-Based Social Network Tool (GENIE) for Supporting Self-management Among High Users of the Health Care System: Feasibility and Usability Study

Valaitis¹,

Cleghorn²,

Vassilev³

et al. 2021

JMIR Form Res

View full text Add to dashboard Cite

show abstract

A Web-Based Social Network Tool (GENIE) for Supporting Self-management Among High Users of the Health Care System: Feasibility and Usability Study (Preprint)

Valaitis¹,

Cleghorn²,

Vassilev³

et al. 2020

Preprint

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BACKGROUND Primary care providers have been tasked with fostering self-management through managing referrals and linking patients to community-based health and social services. This study evaluated a web-based tool –GENIE (Generating Engagement in Network InvolvEment)– as a component of the Health TAPESTRY program to support self-management of older adults who are high health care system users. GENIE aims to empower patients to leverage their personal social networks to access community services towards reaching their health goals. GENIE maps client’s personal networks, elicits preferences, and filters local health and social resources from a community service directory based on results of a questionnaire that explores client’s interests. In the Health TAPESTRY program, volunteers conducted home visits to gather health information on tablets and implemented the GENIE tool. A report was generated for the primary care team for follow up. OBJECTIVE This study examined the usability, feasibility, and perceived outcomes of the implementation of GENIE with older adults who were enrolled in Ontario’s Health Links Program, which coordinates care for the highest users of the health care system. METHODS This study involved two primary care clinician focus groups, one clinician interview, a volunteer focus group, client telephone interviews, field observations, and GENIE utilization statistics. RESULTS Eight patients, three volunteers, and 16 primary care clinicians participated. Patients were most interested in services that were health-related (exercise and socialization). Overall, participants perceived GENIE to be useful and easy to use, despite challenges related to email set up, disease terminology, instructions for personal network mapping, and clarity of questionnaire items. Volunteer facilitation was critical to support implementation of Genie. Tool completion averaged 39 minutes. Almost all patients identified a community program or activity of interest using GENIE. Half followed up on health and social services and added new members to their network over 6 months, while one participant lost a member. Clinicians had concerns about accuracy, suitability, and quantity of suggested programs and services generated from the tool and believed that they could better tailor choices for their patients highlighting the inherent tension between user-centred preferences focused on capabilities and bio-medical definitions of need shaping professional judgement. However, clinicians did note that GENIE strengthened their understanding of patients’ personal social networks. CONCLUSIONS This study demonstrated GENIE’s potential, facilitated by volunteers, to expand patients’ social networks and link them to relevant health and social services to support self-management. Volunteers require training to effectively implement GENIE for self-management support and can help overcome time limitations that primary care clinicians face. Refining the filtering capability of GENIE to allow for better tailoring of results to address the complex needs of those who are high system users may help to improve primary care provider’s confidence in such tools. CLINICALTRIAL Not applicable

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Information and Referral Needs for Care Partners of Adults With Alzheimer’s Disease in Rural and Remote Communities

Cited by 2 publications

References 0 publications

A Web-Based Social Network Tool (GENIE) for Supporting Self-management Among High Users of the Health Care System: Feasibility and Usability Study

A Web-Based Social Network Tool (GENIE) for Supporting Self-management Among High Users of the Health Care System: Feasibility and Usability Study

A Web-Based Social Network Tool (GENIE) for Supporting Self-management Among High Users of the Health Care System: Feasibility and Usability Study (Preprint)

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