Helm is a citizen-led person held record (PHR) developed in Leeds. The Helm concept was created in response to research which indicated that local people would welcome a PHR which allowed them to manage and share information about their health, care and wellbeing. There was enthusiasm about how a personal health record could transform the way in which health and social care is delivered and this feedback provided the driver for Helm’s initial scope and further development.
Engagement and co-design have been the cornerstone of Helm’s development and direction of travel. In keeping with the Design Principles in the NHS Digital Service Manual, the Helm Team have worked consistently to uphold the principle of “Putting people at the heart of everything you do”. Helm has consistently looked to patients, family, carers and health and care professionals to understand their needs and co-design a product that supports and respects them.
We also work within the guidelines set out in the Local Digital Declaration and the Government Data Service code of conduct design principles for data driven health and care.
From the initial concept, to the design and implementation phase, we have engaged with people, carers and professionals. Key stakeholders were identified at an early stage and effective engagement and communications with people, patients, carers and professionals has underpinned Helm’s approach.
The NHS Digital Person Held Records Adoption Toolkit sets out the importance of involving people every step of the way to ensure both citizen uptake and clinical buy in. The toolkit states that involving users and learning from them throughout your PHR development cycle will help you to achieve the following:
Leeds Informatics Board commissioned a piece of research called Joined up Leeds, to explore citizens and care professionals’ views on data sharing and a Person Held Record (PHR. The outcomes formed the basis of the first conversations around Helm and how people would use a PHR to support their health and wellbeing.
Following this research, Yorkshire and Humber Local Care and Health Record Exemplar (LCHRE) commissioned a further research project, Joined up Yorkshire and Humber, to explore the beliefs that people have about how their health and care records could and should be used, their boundaries for what they are willing for their data to be used for, their concerns around how their data could be used, and the reassurances they want about how their data is safe.
The Helm team commissioned mHabitat, a local agency specialising in co-design and innovation, to understand how Helm could be used by the people of Leeds and best address their needs. mHabitat spoke to over 100 people in ten different locations across the City, with a view to understanding the key arears of functionality potential users are interested in and the problems they are facing that could be addressed by a person held record such as Helm. The findings from this engagement campaign were published alongside a list of over a hundred suggestions for potential features in Helm. These suggestions have been used to determine future priorities and provide the evidence for the Helm development roadmap.
We are working with Leeds City Council’s Co-production Group, to develop and test key elements of Helm’s design and functionality by sharing iterations of the product and listening to their views and feedback. In keeping with NHS England and the Coalition for Collaborative Care Guidelines, “Co-production is a way of working that involves people who use health and care services, carers and communities in equal partnership; and which engages groups of people at the earliest stages of service design, development and evaluation.” This principle has helped us to remain focussed on developing a product that will make a positive difference to people’s lives.
We have worked with groups of people in Leeds, with experience of, or a particular interest in certain clinical areas, to inform the development of key features of Helm. One area in which this approach worked well was in the development of Helm’s care plan functionality.
Care Plan Engagement Step by Step Process: