Social Services Innovations — Equity and Inclusion in Digital Mental Health Literacy
By Liza Hoffman, MSW, LICSW
Social Work Today
Vol. 19 No. 5 P. 10

The rise of digital health technology presents novel opportunities for enhancing clinical services and supporting individuals living with mental illness in their recovery. As the cost of smartphones has decreased over time, access to this technology has steadily risen, paving the way for wider engagement with digital health tools and resources (Firth et al., 2016). Research related to digital health has grown exponentially in the past five to 10 years as thousands of smartphone apps targeting a plethora of health conditions have flooded the marketplace (Chandrashekar, 2018).

For many vulnerable populations, however, this technology still remains inaccessible (Büchi, Festic, & Latzer, 2018). Individuals experiencing mental illness may own smartphones but may not have the technical skills to participate in the digital world and to utilize health-related technology to its fullest potential. Because it is the exception, not the rule, for individuals with lived experience to play a central role in the development of mental health–related apps, many of the barriers related to users’ digital skills and knowledge have been overlooked. In digital health research and development, the prevailing notion of “if you build it, they will come” discounts the experience of individuals with limited tech competencies and limited access to digital learning opportunities. As a result, people with serious mental illness (SMI) often cannot access the very tools that are being developed for their benefit. Without digital skills, vulnerable populations cannot access the wealth of resources available to those with more advanced technical competencies.

The divide between those who have the skills to engage with digital opportunities and those who do not presents an opportunity for social workers to advocate for digital equity and inclusion. Access should not be a privilege but rather a right for all who wish to participate in the digital world. In pursuing social change on behalf of vulnerable populations, social workers can help bridge this divide by promoting digital skill development and incorporating smartphone tools into clinical care.

Digital Health Literacy Skills Training
Grounded in social work principles and self-determination theory, our team at Beth Israel Deaconess Medical Center has developed a six-week digital health literacy group curriculum for persons with SMI. Digital Opportunities for Outcomes in Recovery Services (DOORS) supports individuals with SMI in developing digital health skills and knowledge toward their own personal recovery. Within a supportive and interactive group setting, participants learn fundamental smartphone skills and explore digital tools to advance their personal wellness.

Our aim is to help individuals with lived experience to engage safely and meaningfully with the digital health world. Group participants are viewed as the experts on their own experience, and the curriculum can be adapted to meet the learning needs of each individual. We have implemented DOORS within a first episode psychosis day program as well as in two drop-in centers for individuals with chronic schizophrenia, each time altering the group content to better meet participants’ needs. The content areas include digital skill building, setting technology supported wellness goals, capturing lived experience, and evaluating apps. Our group facilitator manual provides guidance for clinicians interested in running digital health groups and is available through our team website (www.digitalpsych.org).

Digital Skill Building
When running the DOORS groups, we focused on meeting people where they were in their technology journey. Some participants were quite comfortable navigating their smartphones and could lend technical support to their peers, while others required more intensive support from staff in learning the fundamental functions such as touchscreen swiping, downloading apps, and accessing voicemail. Participants who were new to smartphones often stated that they felt intimidated by this technology (“the word ‘smartphone’ scares me”), but found comfort in discovering that they were not alone in this feeling. Within an environment of exploration and learning, participants were open to sharing their fears around using technology and also their hopes for how smartphones might support them in their daily lives. A recurring theme was the desire for inclusion in a world that many of their peers were already participating in; this often served as motivation for participants to face their fears related to smartphones and to overcome the technical barriers that were standing in their way.

Technology-Supported Wellness
In honoring participants’ right to self-determination, we encouraged them to identify areas of wellness that were most important to them and to consider how their smartphones might support them in reaching their goals. Through group brainstorming and activities, participants generated ideas for how their smartphones might support wellness, which included watching Zumba videos on YouTube, tracking their physical activity through Apple’s Health app, and listening to guided meditation apps to improve sleep. To manage voices and social anxiety, participants were eager to learn how to access music through their smartphones. Others were drawn to fitness apps containing short, guided exercise routines.

As a group, clients explored the step count feature within the Apple Health and Google Fit apps and helped participants set small actionable exercise goals that they could measure with the help of their smartphone. Participants enjoyed sharing their weekly step count data with the group and provided encouragement to one another in reaching their exercise goals. Gaining awareness of their physical activity prompted discussions on strategies for weaving exercise into daily life and exploration of other digital tools related to physical health.

While digital mental health research often focuses on symptom tracking and disease management, we realized that some of the more practical smartphone features support additional areas of wellness (e.g., social, vocational, intellectual) that can influence participants’ mental health. Many participants struggled with using their smartphones to communicate with their friends, families, and health care providers and wanted to learn how to check voicemail and send text messages. For others who needed support in staying organized, we explored the smartphone notepad and calendar app features. Transportation apps were also of particular interest to participants who rely on public transportation to get to doctor’s appointments, day programs, and their places of employment. While these digital tools are not considered “health” apps, they may still play a role in supporting people with SMI to make progress in their recovery.

Capturing Lived Experience
In keeping with this treatment approach, participants learned how to use their smartphones to build greater insight into their own lived experience. They experimented with apps that could help them track their mood over time through symptom surveys as well as other tools for tracking sleep and step count. They often found it helpful to “slow down” and identify their emotional and physical states. As a group, we discussed the ways in which different lifestyle behaviors (e.g., sleep, exercise) might influence mood and whether altering certain behaviors might yield positive mental health outcomes.

Informed Decision-Making
To help participants make more informed decisions when downloading apps, we introduced key criteria from the American Psychiatric Association’s app evaluation model (Henson, David, Albright, & Torous, 2019). Prior to this learning session, participants described paying close attention to user reviews, star ratings, and cost to guide their decision-making, but did not always consider the trustworthiness of the app. Through an activity comparing two apps, participants looked for key pieces of information within the app descriptions to help them determine which one was safer to use. Participants were surprised to discover that one app had no privacy and data protections in place and decided against downloading it based on this finding.

DOORS Learnings
Through this group experience, we learned that people with living with SMI, especially those with chronic conditions, are ready and eager to use digital tools towards recovery. Participants were able to apply smartphone tools to support their wellness goals and by the end reported increased confidence and interest in using technology for health reasons. One challenge our group encountered was determining how best to meet the needs of all participants who entered the group with varying levels of skills and comfort in using smartphones. In future DOORS iterations, we may include two sessions prior to the start of the standard DOORS curriculum for participants who are brand new to this technology.

Advancing Social Change
As technology becomes more embedded within our society, it is essential that individuals with lived experience, including those with SMI, have equal access to digital health technology, resources, and communities as they work toward their recovery. Social workers can further this social change by supporting patients in developing fundamental smartphone skills and engaging with tools relevant to their wellness goals. In facilitating digital equity and inclusion, we further the social work mission of increasing access to resources and enhancing the well-being of vulnerable populations.

— Liza Hoffman, MSW, LICSW, is clinical director of the digital psychiatry division at Beth Israel Deaconess Medical Center.

References
Büchi, M., Festic, N., & Latzer, M. (2018). How social well-being is affected by digital inequalities. International Journal of Communication, 12(2018), 3686-3706.

Chandrashekar, P. (2018). Do mental health mobile apps work: Evidence and recommendations for designing high-efficacy mental health mobile apps. mHealth, 4, 6.

Firth, J., Cotter, J., Torous, J., Bucci, S., Firth, J. A., & Yung, A. R. (2016). Mobile phone ownership and endorsement of “mHealth” among people with psychosis: A meta-analysis of cross-sectional studies. Schizophrenia Bulletin, 42(2), 448-455.

Henson, P., David, G., Albright, K., & Torous, J. (2019). Deriving a practical framework for the evaluation of health apps. The Lancet Digital Health, 1(2), e52-e54.