In the days where data privacy and transparency in digital health apps are becoming paramount in patients and providers minds can we have a better process? Can we co-create a solution that allows someone agency in who sees their data, and how? Can this solution also be effective and demonstrate health improvement and symptom reduction? A new paper by Dr. John Tourous from Harvard Medical School and colleagues in the Journal of Technology and Behavioral Science proposes a new approach to achieve all of the above.
Tourous et al. propose LAMP- a platform to Learn, Assess, Manage and Prevent to promote better mental health. We have too many recent examples of data breaches and a lack of transparency in how our digital data is stored and used that the authors wanted to embed their platform with full transparency built on the three foundational principles:
- Trust- which encompasses co-design of the app, comprehensive view of data use, sharing, consent and permissions which also includes ability to delete data. Research based on the platform data is conducted in a fully transparent and ethical manner.
- Control- this principle includes app co-design and iteration with controls built in for users to change settings to suit their learning needs and data can be personalized to map to clinical need.
- Community – app data and code is publically available. App use cases and application are designed to be clinically relevant and intended to foster the therapeutic alliance between patient and clinician.
We have seen in recent court cases out of the European Union that a person’s ability to delete data freely fosters trust- the “right to be forgotten” ruling allows people to remove their online footprint. Giving control to app users on how frequently they want to be assessed and how is also an important design feature of LAMP and builds on the published literature. The community aspect also reflects the evidence base that suggests app use can amplify the therapeutic relationship, the members who were part of the LAMP development team wanted their app use to be connected to their ongoing care and not happen in an isolated fashion.
The LAMP process is in-depth and impressive and builds on a lot of criticisms we have seen in the public sphere and the published literature on the issues that plague “free apps.” An intriguing role proposed as part of LAMPS implementation is that of “digital navigator”- the role, is nascent, and necessary as more digital mental health tools deploy as part of clinical care, this person will act as a liaison between the data generated in the app and will provide any tech support and set up issues for LAMP.
I will be eager to track the LAMP platform’s implementation as one aspect not addressed clearly in the platform is engagement- all too often we see digital mental health tools that deploy broadly not translate to high levels of patient engagement. Will LAMP have these same issues?
An opensource fully transparent platform is laudable at a time with trust is challenged, control is opaque, and connections to health care providers are tenuous. Can this platform compete with tech company developed products to place a premium on the user experience and design for engagement? Time will tell, and I am rooting for LAMP to shine bright!
Thanks for reading – Trina
(Opinions are my own)
References
Creating a Digital Health Smartphone App and Digital Phenotyping Platform for Mental Health and Diverse Healthcare Need: an Interdisciplinary and Collaborative Approach. https://rdcu.be/bzJba
