Evolving Data and Digital Strategy to Inform the Care of the Future

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Futurists ponder the world of tomorrow. TV shows like Netflix’s “Black Mirror” or HBO’s “Years and Years” give us some insights and cautionary tales into how we might integrate technology into our everyday lives in the future. Rather than take a dystopian view on the current state of the world and the role technology plays, how might we look for points of integration between humans and technology versus a lens of displacement of human? How might we better leverage data and digital tools to support health?

A new report from Reform– a Think Tank based in the United Kingdom focused on public service reform, explores choices that need to be made in the near term to transform mental health in the long run. The report the group has generated has many valuable insights, and I recommend a complete read of the contents for anyone who is thinking about implementing a digital health ecosystem. On some level, the recommendations they suggest (included below) may be easier to achieve in the National Health Service (NHS) vs. the more fragmented USA healthcare landscape, but the digital era poses opportunities and challenges globally.

The report covers topics that are top of mind for all of us working in the digital health space:

– What does good look like? How do we move beyond the hype of apps?
– What unique aspects of mental health are best suited to a data-driven digital approach?
– How will digital tools impact the NHS? How can they be best leveraged and integrated?
– How do we build trust?
– What are the basics, and how do we get them, right?

Key recommendations delivered in this report include:

1. The National Institute for Care and Health Excellence should make guidelines and protocols machine-readable to inform Clinical Decision Support Systems used in mental healthcare. This would make the guidelines more accessible to frontline practitioners and enable the guidelines to be continuously improved in accordance with up-to-date clinical evidence.
2. The Royal College of Psychiatrists, in partnership with the Medicines and Healthcare products Regulatory Agency, should offer short, online training to mental health practitioners, and better publicise existing information about the Medicines and Healthcare products Regulatory Agency’s Yellow Card Scheme. This will increase awareness among practitioners about how the Scheme can be used to identify and report issues with medical software, including certified mental health apps.
3. The National Data Guardian should issue guidance for innovators and providers to improve the informed consent process for apps and other patient-facing mental health tools. This guidance should consider the needs of the different user groups accessing mental health services, such as children and young people, older people, and those with high levels of vulnerability.
4. In order to build patient trust and encourage the responsible linkage of data to better understand mental health, the Royal College of Psychiatrists and NHS Digital, in partnership with Health Data Research UK, should develop a template for patient engagement for research initiatives linking mental health data. The patient engagement and governance models used by initiatives such as The Clinical Record Interactive Search System research programme could provide the basis for this framework.
5. The National Institute for Health and Care Excellence, in partnership with NHSX, should update procurement rules to ensure that healthcare technologies bought by the NHS are user-friendly and that data is presented in accessible ways to frontline staff. This would equip practitioners with actionable insights to improve direct patient care.
6. In order to improve understanding of mental health conditions, NHS Digital should develop a repository using data held by NHS organisations to help researchers securely identify suitable participants for mental health research studies and assess the feasibility of research projects at early stages. Similar governance frameworks to the Scottish Health Research Register should be employed.
7. NHS Digital, the Health Research Authority and the Clinical Research Network in England should collaborate with academic institutions to develop curated, ‘research ready’ datasets. This would make it easier for researchers to analyse and generate insights from data held by NHS organisations to improve the understanding of mental health conditions.
8. NHSX should require all healthcare providers to design interoperable systems and ensure data portability. This would allow data generated from technologies such as wearables and sensors to be transferred across platforms.
9. NHS Digital should harness the potential of the significant volume of clinical data already held by the NHS by linking together the Mental Health Services Dataset, Improving Access to Psychological Therapies and Hospital Episode Statistics Dataset. Linking these datasets would create greater visibility of patients’ interactions with the healthcare system, which would allow for the better planning of services and a better understanding of patient outcomes.
10. To promote research that will deepen understanding of mental health conditions, NHS Digital should collaborate with bodies such as the Clinical Research Network in England to make approaches to data linkage more transparent by encouraging researchers to publish the code and methods used to link data in an open source platform. Guidance should be developed to ensure that data protection principles are preserved.
11. In order to assess the feasibility of implementing and scaling-up digital innovations, the seven mental health trusts identified to lead the next wave of digital transformation across NHS mental health services should adopt the Non-adoption, Abandonment, Scale-up, Spread and Sustainability framework. Adopting this framework on this limited scale will also help build the evidence-base for its wider use across the NHS.

Globally, Think Tanks are spending a lot of time tracking user insights to map where our next tech GPS coordinates might lead us. This report is an excellent start in mapping critical areas for consideration for incorporating digital health into large systems like the NHS. I also propose it is better to plan that journey in collaboration with end-users, in this case clinicians and patients using ethics and transparency as foundational for how we move forward, as we don’t repeat recent mistakes and lose more trust in supporting people’s health.

Thanks for reading – Trina
(Opinions are my own)



Making the right choices- Using data-driven technology to transform mental health.

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