Leeds is leading the way in developing and piloting an open platform based Person Held Record (PHR) for local people. It follows extensive engagement with individuals, care professionals and stakeholders across the city to understand their needs and aspirations. It is believed a PHR will help people to better manage and control their own care and wellbeing and help prevent further health issues.
The PHR programme will be led by Leeds City Council in partnership with NHS organisations across the city. The technology will be built on an internationally leading open source platform for the health and care sector, developed in Leeds by the Ripple Foundation. Leeds’ philosophy around digital technology of simplify, standardise and share allows flexibility and scalability with the intention to share easily with others across the nation.
Phase one will enable people to register, verify their identity and log into their PHR. It will let people contribute and update information about themselves, for example, a top three things to know about me. It will also integrate with the Leeds Care Record that is widely used by care professionals across the city.
Councillor Rebecca Charlwood, Chair of the Leeds Health and Wellbeing Board said, “Leeds is the second largest city in the UK outside London, with a diverse population of over 770,000 people. We need to nurture a health and care system where people have more conversations and opportunities to help unlock the best solutions for them. The Person Held Record programme is a key enabler of this work.”
“The city of Leeds has the skills and ability to create cutting edge technology for its citizens. The decision to develop a Person Held Record is another clear example”, said Dylan Roberts, chief digital and information officer for Leeds City Council. “We will work closely with the people of Leeds, care professionals and national organisations to ensure any technology we build and implement can be reused across the nation.”
Dr Jason Broch, GP partner at Oakwood Lane Medical Practice and Chair of the Leeds Informatics Board said, “Patients need to access their record to allow them to understand their health and wellbeing better and input their own information to take a more active role. It is the missing piece of the jigsaw towards truly integrated care. In Leeds we believe a Person Held Record will be central to this change.”
Leeds is also hoping the market will help create apps and functionality that will work with the open platform because they conform to the standards set. For example, if you have a chronic long term condition, you will be able to personalise your PHR with this information, allowing for a more joined up view.
Dr Tony Shannon, Director at Ripple Foundation added, “Healthcare is suffering from an underperforming health IT sector which makes it harder for care professionals to work with their patients efficiently and effectively. By building their Person Held Record on an open platform, in line with the international open EHR standard, Leeds has started a transformational move to future proof its healthcare IT systems.
<span style="font-weight: 400;">Tony continued, “Ripple Foundation’s mission is to improve the care of patients and citizens alike by providing technology that supports their needs and delivers easy to use systems that are scalable and cost effective.”</span>
For further information about the Person Held Record in Leeds please contact email@example.com If you are interested in the technology of an open platform please contact firstname.lastname@example.org
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Leeds trail blazing with an open platform Person Held Record
The NHS has long recognised the importance and value of patient and citizen engagement and there are many networks and systems to enable patients to provide input into service and programme delivery.
What the NHS could do better at is co-ordinating that patient involvement, co-ordinating activity so that patients and citizens are not asked the same or similar things by different health and social care organisations at the same time but through different engagement processes.
Our Open Citizen module attempts to address this co-ordination in respect of communication and engagement activities around Integrated Digital Care Record development.
We have already held an engagement workshop with the NHS England Patient Online group and the findings from this will help to shape how we undertake further events but also how the patient held record element of our OpenEHR (Electronic Health Record) could look and feel.
The sharing of information and learning between integration pioneers is part out our community approach. As the Ripple Programme is hosted by Leeds City Council and working with the CCGs and the hospital in the City, we would like to take this opportunity to share the work of the Leeds Care Record.
The Leeds Care Record was commissioned by the three clinical commissioning groups in Leeds and developed by the Leeds Teaching Hospitals Trust built on their PPM+ patient information system. Before, during and after the launch of Leeds Care Record, the project team undertook broad and intensive engagement with both patients and clinical staff and they have agreed that Ripple can adapt and “white label” the communication and engagement material for the integration pioneers (and others) to use.
The resources below have been released under the creative commons licence 4.0 and currently include Ripple branding and graphics that have been created from open source sources (if that isn’t tautology). It is recognised that organisations and localities may wish to adapt and add their own branding but in essence, they are good to go.
As with all the resources we are developing – both technical and non technical – we would like your feedback. If you have any documents or case studies that you would like others to be able to re-use or perhaps detail of when you have used the resources available through Ripple, we would like to hear from you.
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Learning from other initiatives for the benefit of patients