History
Helm is a Person Held Record (PHR) developed in Leeds as a tool for people to add their own information, see aspects of their health and care records, share information across and with health and care providers and source support. The development and Helm features were informed by engagement with the general public in 2017.
The first 18 months of the Helm platform focused on delivering the objectives detailed in its Business Case. Helm was the first partner to integrate with NHS login- a national solution developed by NHS Digital offering online authentication and verification to users used by a variety of products such as the NHS App. It was also one of the few Open Source PHRs in the UK- allowing its code to be accessed and tailored by other localities to suit their requirements. It integrated with the Leeds Care record (LCR), offering Helm users the chance to record Top Three Things (T3T) about them and share this information with their health and care professionals. Helm has integrated with the emerging regional health and care digital infrastructure, the Yorkshire and Humber Care Record (YHCR). This allows regional health and care organisations to be notified when a new user signs up for a Helm account and is a key enabler for regional health and care professionals to view information for people who are receiving support in other localities.
Recent Achievements
In June 2019 Helm entered its second phase, to deliver an ambitious roadmap. Since then the platform has:
Reached its target user base - 300 users who have providing feedback about existing and future functionality;
Introduced capability to share and receive care plan information from regional health and care systems, tested with the Humber NHS Foundation Trust;
Integrated with Leeds Online Open Platform (LOOP);
Introduced a new sign up process, enabling wider roll out;
Enhanced maturity with reporting, auditing and monitoring capabilities;
Developments have been undertaken to strengthen the Helm offer to users and enhance its appeal to health and care organisations:
Helm, with the NHS App, is piloting a contact update feature allowing users to update their phone numbers and email addresses directly into the nationally held demographic record.
Helm architecture has been updated to align to the YHCR approach. This means that any organisation connecting their systems to the YHCR architecture can surface their information in Helm without having to develop an additional integration capabilities.
Dependencies
Remaining roadmap objectives (integration with the NHS App, Collaborative Care Support Plan (CCSP) development, questionnaire development and data surfacing from health and care systems) are linked to a number of local and national strategic dependencies which must be addressed before the roadmap can progress. These dependencies are mainly associated with the pace of partner organisation interoperability development using YHCR:
There is currently no suitable way for GP and Leeds Community Health data to be transferred into Helm without integration with proprietary, commercial solutions.
The NHS App integration with Helm is subject to Helm having the care plan functionality (CCSP). This means that integration cannot proceed until Helm establishes a method for accessing GP data.
Leeds York Partnership Foundation Trust (LYPFT) patient portal procurement is not expected to be complete until January 2021, delaying its integration with Helm.
Leeds Teaching Hospital NHS Foundation Trust (LTHT) procurement of a data store allowing information sharing with organisations via YHCR infrastructure is not expected to be completed by December 2020, misaligning with the Helm roadmap timescales.
LYPFT, Leeds Community Health (LCH), GPs, LTHT integration with the YHCR infrastructure is a prerequisite for Helm user information surfacing in these systems. The questionnaire functionality cannot be achieved until these systems are able to receive and display structured information using YHCR.
Current Status
The Helm project team are working to address the delays caused by these issues. The Helm SRO (Alastair Walling) is consulting with NHS E colleagues about the solutions for GP data surfacing in PHRs and members of the City Digital Team are engaging with LYPFT, LCH, and LTHT colleagues about their progress towards YHCR integration.
A roadmap review session took place in July to assess current project dependencies. It was agreed that Helm remains an integral part of Leeds health and care system ecosystem, and that timing of development and future messages is key to ensure that expectations from users and health and care professionals are successfully met.
Given that the Helm partner organisations are in the process of integrating with the YHCR, and NHS E are exploring methods for GP data sharing with PHRs, it was decided to reduce the pace of the Helm roadmap delivery until these dependencies have been addressed and the required system capabilities are available to progress Helm development.
Next Steps
A number of new developments are being currently pursued, following feedback from the Helm Strategic Board:
‘What Matters To Me’ section in HELM will allow users to share things that are important to them regarding their care with health and care professionals.
Create a Care planning functionality for use with cardiology patients to record discussions regarding preferences
Enable gastro and renal patients to submit health, weight and other readings via HELM for review by consultants
Incorporate the ‘This is Me’ form into HELM so that relatives and carers can complete biographical details and information about preferences/routines/likes and dislikes on behalf of sufferers of dementia so that care be tailored to their needs.
The Helm platform will remain available, recruit additional users and development in the next 6 months will focus on the above items.
Summary
The Helm project has delivered a secure platform, with some innovative functionality and a small user base. The Helm vision remains of strategic importance for Leeds, providing a non-proprietary PHR aligned to local health and care priorities. Reducing the pace of Phase 2 roadmap realisation whilst continuing delivery of fewer objectives will ensure that public money is well used and can be carried forward to the following year. At that point it is hoped that partner organisations will have reached the required maturity levels for interoperability and roadmap development can resume.
The Digital Sub-Group members are asked to set and maintain the strategic direction for Helm, provide an oversight to the project delivery and maintain its accountability, and inform the project team about progress in partner organisations that might impact the roadmap.