PROJECT FOCUS: Supported Self Management – a patient-held electronic health record (EHR) for people severely affected by mental illness in City and Hackney
LEAD PARTNERS: City & Hackney Psychological Therapies & Wellbeing Alliance members, including Core Arts & Sports, The Advocacy Project and East London Foundation Trust, City & Hackney GP Confederation, Patients Know Best
Managing my wellbeing on my smartphone
A digital platform for self-management of mental health and wellbeing
In 2018, local service user groups highlighted the lack of support for recovery once people severely affected by mental illness are discharged into primary care, including difficulty accessing their recovery care plans, and having to manage their health information across different organisations. This also meant that people often had to retell their story as they moved through the pathway which was triggering and upsetting for many.
In response, we worked in partnership with our service users to consider the recovery planning process along the whole recovery pathway, using an electronic health record (EHR) system called Patients Know Best to develop a digital platform with all information that a person may need to self-manage their ongoing mental health recovery, including personal health budget and care plans, physical health information and access to information on local services and resources.
The ambition was not only to enhance self-management by empowering users but also reduce service dependency, improve outcomes, and support a system-wide cultural shift in how recovery and care planning are approached. As Programme Lead, I oversaw the full lifecycle of this complex digital integration, integrating health data from Primary Care (EMIS), Secondary Care (RiO), and VCSE services (Salesforce) into the NHS App via an Electronic Patient Record (EPR) system, Patients Know Best.
Someone living with a long term mental health condition can access their relevant health information via the NHS App. This information can be used to set recovery goals, and used in conjunction with various platform functions to empower each person to best support their recovery as they want to, including:
Symptom tracking
Messaging between professionals, clinicians and others eg. a carer or family member
Journal to input thoughts / feelings
Device Integration (eg FitBit), linked to recovery goals eg exercise / sleep
It also functions as the space for someone to record their story, and share this with other professionals as they move through treatment and recovery services, enabling them to direct professionals to this, instead of having to repeat their story.
DATA FLOW FROM PROVIDERS
This was not just a technical project; it was a cultural and operational transformation. I led the governance, data assurance, and clinical safety processes, managed multiple external suppliers, and delivered a strategic digital inclusion approach – including funding devices and data plans for digitally excluded users. The outcomes were significant:
12,000+ patients severely affected by mental illness now access their records and care plans via the NHS app, with high uptake by underrepresented groups.
Users saw improved health outcomes, including reductions in blood pressure, BMI, and smoking rates.
Service use reduced, with financial models projecting +£1m cost savings from reduced readmissions linked to digital recovery tools.
Using the digital platform for self-management of mental health and wellbeing within a typical treatment & recovery pathway
“I love this because I can see my information with both Core Arts and my GP on the NHS app, it has everything in one place and I can do this all on my phone”
“I’ve been using this with my FitBit to help me track my weight. The graph really helps me to visualise my weight loss journey”
“I like having access to both my physical and mental health records without having to ask my doctor”
“I want to use this on my phone as a sort of notebook so that when I next see my GP I can just show them this one website on my phone”
PUBLICATIONS, CITATIONS & AWARDS
Highly Commended:
‘IT & Digital Innovation’, HSJ Value Awards 2021
FINALIST:
‘Empowering Patients Through Digital’ & ‘Improving Mental Health through Digital’, HSJ Digital Awards 2024
Highly Commended:
‘Digitising Patients Services Initiative’, HSJ Awards 2020 where judges noted “this project has demonstrably improved patient outcomes, improved efficiency and innovatively developed a digital platform to support patients with serious mental health issues once they leave secondary care. There is an opportunity to expand this methodology out into other mental health pathways of care.”