Innovations in Consumer-Driven Care

Posted on
January 6, 2020

Introduction

Barriers such as stigma, discrimination and lack of available services prevent 60% of Canadians with mental health issues from seeking help (www.mentalhealthcommission.ca). People with unattended mental health issues may find themselves in acute situations where healthcare providers, emergency personnel and the public at large are not equipped to support them appropriately. In addition, traditional post-acute and ongoing community supports lack the resources required to meet the demand. Although there are many successful mental health programs and interventions, challenges exist in scaling and spreading these traditional approaches.

Digital health, an umbrella term referring to the use of technology for health, provides the opportunity to deliver mental health services and support using alternative channels. There is hope that digital health will expand access to mental healthcare from people’s preferred location through commonly avail-able technologies such as smartphones, tablets, laptops and computers. This is particularly beneficial in regions where access to mental healthcare is limited in scope and hours of service; where mental healthcare is costly to deliver and when people who perceive stigma/discrimination do not seek help. This paper presents Saint Elizabeth’s experience with digital mental healthcare solutions that aim to decrease barriers such as cost and health-seeking challenges, as well as increase access; it also shares the lessons learned from implementation and the implications these have for healthcare providers.

Background

In Canada as well as virtually any part of the world, the burden of mental illness is high. There is now a general acceptance that one in five people are affected by mental health issues in any given year, and one in two will be affected by the time they are 40 years of age (Smetanin et al. 2011). Our current health and social care systems are not able to adequately address this significant need without exploring creative and scalable solutions.

The number of digital health solutions used by individuals to address various health needs and issues are on the rise. Digital health innovations in the context of mental health are focused on improving accessibility for hard-to-reach populations (e.g., those with barriers such as time off work or lack of child care, and those who desire anonymity or face stigma); reducing costs (e.g., operating efficiencies, the ability to reach a large number of patients and therapist time optimization); flexibility in terms of standardization and personalization (e.g., implemented with high fidelity, tailored to individual needs, designed for differ- ent mental health issues or topics); interactivity and consumer engagement (e.g., use of multimedia, consumer empowerment and improved continuity of care) (Lal and Adair 2014; van der Krieke et al. 2014).

The Mental Health Care Innovation Network is a global initiative that has identified close to 40 digital health innovations with distinct goals. These include cognitive behavior therapy; social networking for mental healthcare provider supervision; digital platforms for peer-to-peer support; case management systems for monitoring the delivery of care; telemedicine systems to provide mental healthcare to remote populations or supervision to direct care providers; screening and decision-support tools for direct care providers; video game interfaces to address psychopathology targets and text messaging to motivate patients (www. mhinnovation.net). A host of other examples of digital mental health tools are also gaining research support (Pijnenborg et al. 2010; van der Krieke et al. 2014; Woltmann et al. 2011).

The evidence base for technology-assisted mental healthcare is in its infancy. A systematic review comprising 49 studies that used digital technology (mobile and web-based) for the treatment, diagnosis or management of mental health disorders or training and education of mental health workers found that these methods were well accepted but there was little formal evaluation of their effectiveness (Naslund et al. 2017). A comprehensive review of electronic mental health self-management interventions concluded that such interventions are “at least as effective as standard mental health care, according to the effect size of individual studies ... interventions focusing on medical management and, to a lesser degree, on psychoeducation and on communication and shared decision making are more effective than care as usual or nontechnological approaches to mental health care” (van der Krieke et al. 2014: 46).

Digital health technologies that have been studied and reported by Naslund et al. (2017) were organized in four categories:

1. Illness self-management and relapse prevention – e.g., Health Buddy auto- mated home messaging device used to manage psychiatric instability with remote nurse monitoring;

2. Promoting adherence to medications and/or treatment – e.g., automated SMS texts to remind patients to take their medications or attend appointments with their mental health provider;

3. Psychoeducational, supporting recovery and promoting health and wellness – e.g., peer-to-peer online social networking, peer support or peer coaching;

4. Symptom monitoring – e.g., automated prompting using smart phones to report symptoms, mood and psychological state.

Saint Elizabeth Health Care (Saint Elizabeth)

Saint Elizabeth is a Canadian, not-for-profit and charitable organization that has been responding to client, family and health system needs since 1908, primarily in the home and community setting. Saint Elizabeth is known for its track record of social innovation and breakthrough clinical practices. This stems from its mandate to empower patients and families by bringing person- and family-centered care to life throughout the healthcare ecosystem; mobilize communities through partnerships and community-led development; transform care systems by collaborating to improve the patient experience, health outcomes and system performance and inspire possibilities by scouting and igniting new ways to deliver care and be a catalyst for broader social impact.

To realize this mandate, Saint Elizabeth has developed a comprehensive digital health strategy and associated IntelligentCareTM Platform to enable around-the- clock delivery of healthcare and support services. Healthcare recipients/health seekers can access services through their preferred communication channel – web, text messaging, phone and two-way video. The IntelligentCareTM Platform has four major functions as depicted in Figure 1. In Telecare, information, care navigation and clinical triage services are provided on demand, using the most convenient communication channel. Telehealth offers virtual care technologies for health providers to monitor and engage patients and their family caregivers in meaningful interactions across a patient-centered care journey. Smart Home uses real-time sensor data and intelligent algorithms to establish routine activity patterns, and identify abnormalities and emergency events. Caregivers receive insight into activities of daily living. The balance of this paper outlines the capabilities of Self Care.

Saint Elizabeth has a systematic process for searching, screening and selecting technology solutions to pilot, implement or support. Three specific Self Care technologies (Tyze, Tess and Wildflowers) were identified to support patients and their caregivers who experience stress, coping challenges and other mental health concerns.

Tyze Personal NetworksTM is a social venture that uses technology to engage, inform and mobilize online personal networks of care (http://tyze.com/). It provides a mechanism to complement supports already in place by adding the power of family and friends into the care equation. Tyze enables network-based care and support through the creation of private and secure online communities centred on a person requiring care. See Figure 2 for a snapshot of a sample Tyze user’s CareWall.

Tyze is a commercialized product, sold to organizations who wish to support their members with a tool to promote independence through interdependence. Using Tyze enables people in a network to “share the care,” thereby reducing the stress associated with caregiving which can often lead to caregiver burnout. Tyze has been found to improve the quality and quantity of support available to network users (Chomik Consulting & Research Ltd. 2013). Informal networks are critical to helping people live safely at home and avoid isolation. To date, Tyze is being used to support close to 10,000 personal networks for individuals and their families in Canada, United States, United Kingdom and Australia. Self-reported evaluation data collected by Saint Elizabeth from Tyze users show the following:

• 90% report Tyze made it easier to keep information current

• 88% report Tyze made it easier to share important information

• 86% feel more connected to their community and friends

• 84% report an improved quality of life

• 82% feel less alone in facing their health or care situation

• 78% can better manage their health or care.

Organizations who administer Tyze for their patient populations have reported the need to frequently engage network owners through distribution of new resource materials, updates and announcements on the Tyze networks. They have also found that onboarding of new network owners needs to be monitored and supported to ensure they are able to build their circle of care.

Created by X2AI, TessTM is a psychological chatbot that is powered by artificial intelligence (https://x2.ai). See Figure 3. Tess holds conversations with the user, which simply start with “How are you?” and continue in a similar way as a coach or psychologist would. With the oversight of a therapist, Tess provides users with health education, coping mechanisms and supports for self-care and emotional well-being. Over time, Tess gets to know the patient – what they love and why, what scares them, what calms them down and based on these learnings, Tess determines the best way to help them cope through a period of depression or other challenges.

Through a partnership with X2AI, Saint Elizabeth is exploring how Tess can be used to support family caregivers, a growing population that is dealing with significant stress and burden, and needs more support. Caregiving experts from Saint Elizabeth shared incredible insights with Tess to ensure the product’s readiness for field use and testing. Through this initiative, Saint Elizabeth “chatbot trainers” are helping to further advance Tess’s caregiver conversational skills with the goal of using the platform to offer customized and on-demand 24/7 access to caregiver support and coping tips.

Saint Elizabeth recently introduced Tess to its living lab environment, where employees who are family caregivers interacted with Tess over a 30-day period. The purpose of these interactions was to help Tess learn and develop the ability to hold meaningful and relevant caregiver support conversations. Participants ranged from 20 to 59 years of age, with the majority aged 50–59. They identify themselves as parents, friends, grandparents, children and cousins of individuals they are providing informal care to. The pilot was very successful: with no training required, Tess was easy to launch, with high adoption and engagement throughout the 30-day period.

Early findings from a small sample of 26 Tess users identified 12,000 text messages were exchanged between Tess and the participants. After each conversation, the user was asked, “Did that help?” – 88% of the time, the users strongly indicated it helped them. This was confirmed by survey findings: 82% found Tess to be convenient all or most of the time; 80% reported that Tess responded appropriately with relatable topics; 76% of participants found Tess provided relevant support and coping tips all or most of the time and 70% of participants found value in having conversations with Tess. The request for pilot participants was over-subscribed and the zero dropout rate during the pilot phase indicated a strong willingness to use this technology. Saint Elizabeth plans to offer Tess as part of its Elizz Caregivers in the Workplace employee program. In addition, the organization plans to continue working with X2AI to further develop Tess to support other patient populations and programs, such as end of life care.

Mobio’s Wildflowers Mindfulness is a mindful meditation application, which helps people manage their stress and anxiety during difficult times (http://www. wildflowersmindfulness.com). To do this, the mindfulness-based stress reduction (MBSR) protocol is used, blending traditional practices with new technologies. The Wildflowers meditation app aims to:

• Empower individuals to embrace mindfulness meditation when and where they choose

• Reduce stress and improve well-being

• Track moods to drive personalized meditation.

Saint Elizabeth has been engaged in a formal pilot in the North American context. The goal of the pilot research is to evaluate the feasibility, tolerability and efficacy of the Wildflowers meditation smartphone application as a technology for supporting well-being among Saint Elizabeth employees, many of whom are caregivers in both professional and familial contexts. Specifically, the study aims to assess the effects of the Wildflowers app on participant stress, mood and resilience over a four-month study period and to assess its utility for Saint Elizabeth. Exploratory measures around participant workplace productivity and sick days are also being investigated. The early lessons identified to date are related to the need for seamless onboarding and decreasing drop-off rate by supporting users to download and get acquainted with the app.

Discussion

The current investments in mental healthcare through provincial and federal funding are not adequate to meet the level of demand for services and support. In addition, out-of-pocket costs for mental healthcare can be a significant barrier as well as a strong catalyst for innovations that are cost-effective. Digital health solutions provide important responses to meet these challenges including the tracking of behaviors (e.g., frequency of activity, insomnia, hypersomnia) using unobtrusive, invisible or passive monitoring on the body or in the home, and with virtual communities (Ben-Zeev et al. 2015). Behavior tracking can also be used to provide feedback and suggestions to influence a person’s behavior. Such tools help to address the scarcity of resources in mental healthcare by providing alternate methods for populations that require ongoing support. Digital health tools used by patients/clients can also support those who have challenges accessing care because of geographic barriers (i.e., rural settings), time of day (i.e., evenings, nights) and social factors (i.e., stigma and discrimination). These tools are often designed to support the involvement of informal caregivers (i.e., Tyze) to create better linkages in terms of information, ability to support family members from a distance as well as create a sense of connectedness for those who are isolated.

In areas where there are shortages of mental healthcare providers, these tools help to expand capacity by supplementing in-person care through less costly methods. The promise of digital healthcare also comes with several key cautions. Although there is an increasing evidence base for the use of digital health to support people with mental health and well-being (Fairburn and Patel 2017), there is a need for more robust evidence for specific technologies (Price et al. 2014). With the increased availability of commercially produced apps, patients require help and guidance in identifying evidence-supported apps (Donker et al. 2013) as well as ensuring efficacy considerations outweigh commercial interests. In addition, little is known about the long-term impact of digital health interventions and this is an area for further research attention (Donker et al. 2013). Similarly, it has been difficult to draw conclusions about the effect of digital technology usage on sub- populations such as adolescents with pre-existing mental health problems (George et al. 2017) or those with serious mental health problems such as schizophrenia, schizoaffective disorder or bipolar disorder (Naslund et al. 2015). Consent, data privacy and trust (ethical collection and use of data) also need to be ensured (Nicholas et al. 2017) and reviewed on an ongoing basis with digital health users, particularly in the context of digital solutions that use unobtrusive monitoring, collection of vast amounts of data and direct interventions using predictive analytics. Professional associations and regulatory bodies can support the rise and efficacy of digital health by engaging early with developers to learn, share and influence the inclusion of professional standards and considerations early in the development process. Preparation and dissemination of white papers (e.g., Canadian Association of Social Workers 2014 document on social media and social work practice) from the professional vantage point can significantly increase the quality and safety of digital health solutions for all Canadians.

Saint Elizabeth’s experience has demonstrated the value of involving healthcare providers in assessing both the benefits and drawbacks of digital health, and offering training on how to integrate new technologies into their practice as part of ongoing professional development. Furthermore, provider knowledge of the latest evidence-supported digital health technologies and their willingness to adopt and/ or support the use of digital health are important dimensions for the effective use of these innovations. Moreover, providers benefit from the integration of digital health into clinical workflows, policies and procedures to support more seamless healthcare delivery.

Nurses have significant expertise in providing holistic care and understand that patients with mental health challenges require ongoing support to address stress and anxiety through psychosocial supports – many of these needs can be addressed through digital health solutions. Nurses can play a strong advocacy role in the use of these creative solutions as well as be “innovation activators” by identifying current and future problems and how these could be addressed. As well, nurses need to develop better skills, tools, policies and protocols for becoming effective supporters in virtual care environments. As virtual care workers, nurses need new ways to understand the full context of the patient and create effective therapeutic connections with their patients and caregivers (Nagle et al, 2017). Lastly, there are important research questions that require interdisciplinary research that addresses the intersection between digital health, behaviors, engineering and communication. Leveraging vast data collected through digital health platforms may also support research at a scale not seen thus far.

Conclusion

Digital health innovations for people facing mental health challenges can help address many of the barriers they face in accessing services and support. There is increasing evidence for a range of such technologies. Saint Elizabeth is contributing to this evidence base by systematically selecting and pilot testing specific digital health technologies in the Canadian context.

Posted on
January 13, 2020
in
Research
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