The third webinar in our #EvaluateDigiHealth Evidence Generation series, provided fascinating insights into the factors needed to promote patient trust and engagement in digital mental health, with three contributors each bringing extensive experience and differing perspectives. The discussion included a debate on patient perspectives on evidence needs for digital mental health and discussion about future challenges for digital mental health developments and how to address them.
This webinar was chaired by Professor Paul Wallace, Professor Emeritus at University College London and Clinical Director of the Health Innovation Network and NIHR London Clinical Research Networks. He was supported by Dr Jean Ledger, Research Fellow in the Department of Applied Health Research at University College London.
The webinar featured a panel of experts:
- Professor Dame Til Wykes – Vice Dean Psychology and Systems Sciences, Institute of Psychiatry, Psychology and Neuroscience, King’s College London. Focuses on involving service users, and looking for digital applications that are acceptable, feasible and effective for people with mental health difficulties.
- Dr Sarah Carr – Senior Fellow in Mental Health Policy, Institute for Mental Health, University of Birmingham. Her focus is on Patient and Public involvement.
- Dr Dan Robotham – Deputy Research Director, McPin Foundation a research charity focusing on mental health. Dan has various interests including clinical records, apps, inclusion and exclusion and data privacy. He works with designers and developers to create interventions.
The impact of COVID-19
Professor Dame Til Wykes, began the session by discussing how mental health services have been most effected by the COVID-19 pandemic as they rely on face-to-face conversations to assess how someone is feeling. This she argued cannot be assessed properly over video call adding that the following issues have posed significant challenges to delivering mental health services during lockdown. All outpatient appointments have been affected and although some challenges have been overcome with skype and zoom meetings, not everyone can access them due to lack of technical skills and technology for some groups.
Dr Sarah Carr described the pandemic as a “test bed” for digital mental health technologies. She discussed the rapid increase in remote working and tele-mental health services that seems to be working for some. Some service users have been asking for it for years and are very happy to be using more digital technology to access their services. But she acknowledged the difficulties of access and privacy for some. Sarah discussed that although the Government is keen on implementing more digital mental health technologies, there are growing concerns about how much that will take over face-to-face service in the long run.
Dr Dan Robotham discussed that when McPin evolved to be a home working organisation, he spent a lot of time looking at the barriers to people’s inclusion. He would like to see IT and tech support based on lived experience – people who can understand the issues people are facing and design tech support in a friendly way. Dan argued that the reason many digital integrations haven’t worked well in the past, is that they haven’t been designed for the people they are for – solutions looking for problems. Now, he argued, COVID-19 is a problem looking for a solution.
Data privacy and ethics
When discussing the barriers preventing trust in digital mental health, the panel identified lack of clarity on data use, privacy and consent as a substantial barrier and highlighted the importance of discussing the ethics and implications of a digital health solution.
Professor Dame Til Wykes commented that approximately 75,000 mental health apps were created last year but that until you download an app, the information available is minimal. She commented that data privacy statements often require a lawyer or university level degree to fully understand. She suggested that there needs to be more clarity for users on how long you need to spend on an app to get benefit and how many won’t get any benefit (this is usually around 25%).
Dr Sarah Carr highlighted the importance of building trust and transparency and suggested having some agreed ethical frameworks that are co-created with the private tech companies at the beginning of research.
Patient and public involvement
The panellists agreed that public and patient involvement is vital from the beginning of the design process, it is not enough to bring the service users in as part of a steering group once the majority of the decisions have been made. The panel agreed that this is important for uptake and adherence, so ultimately benefits the creators of the innovation also.
Dr Dan Robotham stated that there needs to be synergy between what an app developer wants to achieve, what clinicians want and what the user needs. He highlighted that testing is important but not just with early adopters – there are a broad range of people who are going to be potentially interested but aren’t early adopters, and they should be included in a series of meetings with app developers throughout. Dan worked on a game change project using virtual reality scenarios so people can test social situations without doing them in reality. He also spoke about the idea of getting communities of interest together – people who are interested in the areas, such as coders with lived experience of mental health issues, clinicians and users and running “hack days”.
Complementary therapies and unmet need
The panellists agreed that while digital tools are very helpful, they shouldn’t necessarily replace face-to-face communication. Professor Dame Til Wykes commented that it is more of a complementary therapy and the two approaches should be blended together.
Dr Sarah Carr commented that the marketplace for digital mental health tools is becoming increasing confusing and that there is a difference between designing apps that are more focused on maintaining wellbeing rather than those living with long term conditions. You cannot assume wellbeing apps will work for this second group of people. She suggested having a standard for quality so that people can make informed choices.
Professor Dame Til Wykes agreed that there is an unmet need for those living with mental health difficulties, not just looking for a wellbeing tool. She highlighted that this requires a very different approach and they still need to negotiate that space. She also noted that there is a big gap for apps with evidence.
Approximately 60 participants attended the webinar including representatives from industry, academia and the NHS. The live discussion was active and far reaching. Below please find a list of useful links to resources and information shared by the participants:
- Some background on the rise in mental health problems during the pandemic: https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(20)30308-4/fulltext
- This paper is co-authored by panel members Til and Sarah: https://www.sciencedirect.com/science/article/pii/S2215036620303072
- Support on how to evaluate digital health, written for Public Health England/GOV.UK: https://www.gov.uk/government/collections/evaluating-digital-health-products
- Here’s a recent blog by Dan on digital exclusion and COVID-19: https://mcpin.org/digital-inclusion-must-be-a-priority/
- Here is a paper Til co-authored on Telehealth in the context of the pandemic – https://jamanetwork.com/journals/jamapsychiatry/article-abstract/2765953
- Here’s a McPin blog on virtual reality and psychosis: https://mcpin.org/virtual-reality-for-psychosis/
- This is useful for understanding the level of evidence needed for digital health interventions: https://www.nice.org.uk/about/what-we-do/our-programmes/evidence-standards-framework-for-digital-health-technologies and this is the APA app evaluation framework https://ps.psychiatryonline.org/doi/10.1176/appi.ps.201700423
- There is an NHS app library that gives a nice overview: https://www.nhs.uk/apps-library/
- This paper looks at service user views: https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-018-1979-1
- Paper on “digital navigators” to support using smartphones and digital in care – https://onlinelibrary.wiley.com/doi/abs/10.1111/acps.13149
- There’s this paper by Dan that might be useful: https://www.jmir.org/2016/11/e309/
- A good example of how a digital mental health research project attempted to engage with the ‘hardly reached’ too https://linkinghub.elsevier.com/retrieve/pii/S2215036618302967
- Recently been published on DHT assessments https://www.nhsx.nhs.uk/blogs/streamlining-digital-health-technology-assessments/
- Good Thinking as an option of an existing platform? https://www.good-thinking.uk/