PRSB to join Health Plus Care Online

You can join the PRSB at three exciting sessions at Health Plus Care Online next month, where we’ll discuss how standards are working in action.

On 24 February, the citizen and clinical leads on our social care project, Sam Bergin Goncalves and Professor Adam Gordon, president elect at the British Geriatrics Society, will talk about how using standards can improve the quality of support for people living with complex needs. The session will also focus on personalised care, and how standards are able to support this.

The following day Katie Thorn, digital engagement manager of the Registered Nursing Home Association will talk through the standard which enables digital information to be sent from care homes to hospitals in a crisis. She’ll also be sharing examples of how this is working in action. Meanwhile our chair Professor Maureen Baker will also be taking part in a panel session on the 24 February, to discuss how the pandemic is changing the face of digital care.

Registration for this year's event is now open and the sessions are free to attend for all health and care professionals.

Better information sharing will help people with rare conditions

Varan Navaratnam has a range of complex, long-term conditions, some of which have yet to be diagnosed. He explains why good digital information sharing and care plans could make his care better and safer in the future.

How have your health conditions impacted your life and what kind of care have your received?
I was born in Sri Lanka with a neurological disorder called spino-cerebellar disease and hearing problems, though these were not diagnosed at the time. I moved to the UK when I was four, and struggled with school where I was treated as a problem child. It wasn’t until I was 12 that they realised the extent of my hearing problems and I was supported by the NHS and able to go on to complete my qualifications.

I suffered with unexplained coordination problems for a long time after moving to the UK, and had repeated falls. I was admitted to A&E several times during this period, and always had to repeat my story. I was eventually transferred to hospital where I spent seven weeks being monitored and having tests, but nobody has ever been able to diagnose my disability.

Since childhood I have developed a range of other conditions, including diabetes, back pain, tunnel vision, sight problems, sleeping difficulties, depression, memory loss, coordination problems and involuntary movements. Some of this may be linked to the fact that my brain wasn’t fully formed at birth and doctors did not have the right information about my condition.

What services do you currently use?
I use a wide range of services for my conditions and have ongoing tests to investigate the symptoms they can’t find a cause for. In addition to regular GP visits, I use The National Hospital for Neurology and Neurosurgery and the neuro-ophthalmic for my eyes. I go to an eye clinic in Queens Romford, who are currently trying to investigate the reason behind my unexplained visual loss. I also use a physiotherapist for my balance as the whole of my left side is very weak. I use deafblind enablement for my support to hospital appointments and for entertainment.

Why is good information sharing so important to you?
One of the greatest challenges for me is that doctors do not know what all my conditions are, so I am regularly being referred or different services for further investigations, tests and monitoring. Good information sharing would mean that the different services involved in my care would have access to the same information and notes, and it means that I would not be having to repeat myself time and time again. Due to my memory problems I worry that I will forget an important detail, which could compromise my care. I would feel much safer knowing that the people responsible for my care had access to the right information. If everyone involved in care can find information in the notes, they can also prevent potentially dangerous situations- such as getting the wrong medication or the wrong tests.

If you’re a patient who would like to get involved with our work or share your story, please contact

Joining Forces to Enhance Care Delivery

The PRSB, INTEROPen, and the Royal College of Physicians have formalised a new official partnership, enhancing our joint commitment to improving information sharing across health and social care.

On 22 May, Lorraine Foley, CEO of the PRSB, Luke Readman, Co-Chair of INTEROPen, and Dr Ian Bullock, CEO of the Royal College of Physicians, signed a Memorandum of Understanding (MoU)  agreeing to ‘work together to advance sharing between systems across the NHS and social care. This will be done through the engagement of clinicians and care professionals patient/carer representatives, vendors and informaticians’.

The PRSB, INTEROPen and the RCP have taken this decision to formally recognise the strengths that each party brings to addressing the challenge of creating interoperable information systems across health and social care. The organisations have agreed to work as trusted partners in an open and transparent business relationship to develop collaborative, value for money standards in response to customer needs across health and social care.

Importantly, the partnership aims to ensure that professional standards are adopted into everday practice to improve the information-sharing that underpins safe and effective care and that they use open standards, such as INTEROPen CareConnect FHIR profiles.

Each organisation brings unique strengths to the partnership: PRSB is the voice of more than 40 clinical, professional and patient representative bodies on standards for the content of care records; RCP offers expertise in the development of standards and unique access to its clinical experts, and INTEROPen has formed to bring these key interoperability stakeholders together, including more than 140 vendor organisations and techUK, to focus on the development of the interoperability specifications which vendors have signed up to implement to ensure better real-time structured and coded information sharing across health and care systems.

Patient engagement ‘key focus’ for PRSB

Judith Brodie has joined the PRSB as a patient engagement consultant. She talks to us about her new role and why she got involved with the organisation.

What will your work at the PRSB involve?

The PRSB has a strong commitment to patient and public engagement, which is evident through the work it has been doing so far. While the organisation has been making great strides in this area, I have come on board to strengthen the patient engagement work. I started working with PRSB last year when I joined the assurance committee, which gave me the opportunity to contribute and offer patient insight. I’ve now joined as a consultant, as the PRSB seeks to develop its work in this area. My role will be to look at everything the organisation is currently doing, but through the lens of the public and patients. I will be looking at the ways we can get patients even more integrated into PRSB activities and support them in making recommendations for change.

Why do you feel so passionately about patients and citizens being involved in their own care?

Health and social care is all about the individual. I think it’s sad that sometimes in a system under intense pressure that can be lost. In our lives we’re all patients and we’re all citizens. To be in a position to make a difference to patients is why most people join health and care organisations in the first place, so it’s really important that patient voices are heard. Increasingly, more and more people are getting involved in their own care. For example, we have older and disabled people getting personal care budgets and people going on self-management courses for long-term conditions. Patients want to be partners in their own care so it’s really important that the system supports this. Personalised care is like a positive circle. Engaged patients who are able to self-manage rely on healthcare providers less, and are happier and healthier as a result.

Why are standardised records such an important part of enabling better personalised care and self management?

If you have a long-term condition, it’s really important that you work in partnership with everyone involved in your care so that you can self-manage as far as possible, and get the right treatment when needed. Good and accurate records means that information on your history is available in one place, enabling healthcare providers to offer better and safer care. It also means patients can see what’s been recorded about them, enabling them to play a much bigger role in working with specialists. PRSB is a really critical player in making that become a reality.

It’s well known that when there’s a transition in the patient journey, things are more at risk of breaking down. Whether you’re being transferred from hospital to the community or another service, communication is crucial. PRSB is facilitating the smooth and accurate transferring of information with the patient, making the system less vulnerable to errors. This is where I believe technology can make a huge difference.

To find out more about our work with patient engagement, please contact


PRSB working with NHS Digital on standardising pathology coding

Diagnostic information is important in healthcare – pathology data follows the patients from their first medical encounters through their diagnostic and treatment pathway, and throughout their whole journey. Accurate and comparable information is a cornerstone of any medical data exchange and decision making, therefore establishing and adopting underlying principles and standards of coding and communication are essential.

The PRSB is supporting NHS Digital to standardise pathology coding. There are some 250 pathology labs that will be affected by this programme and at present it is unclear how information flows between them and primary and secondary care providers. Different providers and vendors also use a variety of coding systems, which are useful and safe in their own settings. But consolidation of information from different labs is difficult. Past efforts to unify diagnostic coding have not been successful and clinical engagement is needed if solving this problem is to succeed.

NHS Digital were keen to involve PRSB and clinicians in the Digital Diagnostics programme now being undertaken. In April PRSB began the initial phase of work to support the definition of a scope and approach, and develop a plan for broad and comprehensive engagement with key stakeholder groups including professionals and patients.

PRSB and the Royal College of Pathologists are working with NHS Digital and the Digital Diagnostics programme to promote support for this work, provide clinical leadership for the design of a diagnostics test list, collection processes, validation and support for the wider efficiency strategies of NHS England and NHS Improvement and work with international experts on new coding content areas.

Help us improve the quality of GP referral letters

We’re asking for your help with a survey to develop a standard for clinical referral letters to improve the quality of information sent by GPs.

When finished, the clinical referral letters standard will complete our suite of transfer of care standards, and will enable hospital clinicians to reduce inappropriate referrals and better manage heavy caseloads.Working in conjunction with NHS Digital and the Royal College of Physician’s Health Informatics Unit, the PRSB held a workshop on 9 January for more than 40 patients and professionals, to discuss the information that needs to be recorded when a person is being referred for further treatment. Work on this project is essential to support the ageing population and the number of people living with long-term conditions who receive ongoing care. Our aim is to produce standards that are practical to use, provide hospital clinicians with what they need to respond to a referral, help patients get the right care and help GPs to communicate the right information.

“Good information sharing between primary and secondary care is highly beneficial for both professionals and patients,” said Dr Neill Jones of NHS Durham Dales, Easington and Sedgefield CCG, one of the clinical leads on the project. “Professionals can share and find relevant information in a timely manner, resulting in safer and more consistent care for the people receiving it. It leads to less duplication of tests for example, and means that patients can be better managed, treated more quickly and redirected to other services where necessary. Overall this standardisation will lead to better and safer care.”

Co-lead on the project, Dr Gareth Thomas of Salford Royal NHS Foundation Trust added: “From my experience as a clinician, getting timely, accurate information is essential so that patients can get rapid access to the right services they need.”

You can complete the survey here before it closes on 9 March 2018 . A standard will be published in spring this year.

PRSB explores how standards are being used

​Putting standards into practice is an essential part of the work we do

The PRSB has been undertaking a series of visits to organisations who are currently using the e-discharge summary standard, to better understand the successes and challenges they are having.

For standards to be successfully put into action, they must be useable in an everyday care setting. Through our visits to different trusts across the country, we have been talking to health and care professionals about where and how they are using the standard and the benefits they are seeing. We visited 15 organisations in total, including acute hospitals, mental health trusts and sustainability and transformation partnerships (STPs). All these organisations are at different stages of implementation and have different levels of infrastructure in place. Following the visits we have produced a report, which highlights some of the key findings.

For the healthcare professionals interviewed, clinical engagement in standards remains very important, to ensure that when e-discharge summaries are being used, they meet the needs of both the discharging clinicians and the GPs. Some professionals reported that the importance and value of the discharge summary was not always understood by those completing it, and they weren’t sure what information was mandatory or not; this sometimes resulted in poor quality, incomplete and inaccurate discharge summaries.

While organisations were keen to engage with patients and provide them with the information they need after discharge, not all trusts knew how this should be done, indicating the need for more best practice examples. Cost was flagged up as an issue by some trusts, who did not have clinical systems to support national standards.

As a result of these findings, the PRSB has put in place plans to develop materials to support Chief Clinical Information Officers (CCIOs) and medical directors to drive change locally, as well as creating resources to educate professionals on the importance of a high-quality discharge summary. To make it easier for the e-discharge summary standard to be implemented at organisations that don’t have clinical systems in place, we will review, clarify and communicate the minimum essential information that will be required.

We are also working with NHS Digital which will be conducting first of type testing to ensure messages can be sent in structured coded form with a range of trusts, EPR systems and GP systems. This will help us to help us to make sure the standard is compatible for most major systems suppliers. If you’d like more information about standards or support with implementation, please contact us at

GP videos show importance of e-discharge summaries

GPs tell us that the discharge summary is often the only record they obtain of a patient’s hospital stay and a well-written discharge summary is invaluable. But in busy hospitals its importance is often overlooked.

A new series of educational videos by the PRSB aims to help raise awareness amongst health and care professionals of the importance of good e-discharge summaries.

When primary and secondary care providers share the right information in digital discharge summaries, it helps professionals to improve continuity of care and safety – which can save lives. Working in collaboration with GPs from the Lea Vale Medical Group, Bute House Medical Centre in Luton, Bedfordshire and Luton & Dunstable University Hospital, NHS Foundation Trust, we have produced a series of videos that help to demonstrate why digitally shared information is so beneficial to patients and professionals.

PRSB has received feedback from trusts that GPs find discharge summaries can be incomplete, lack important details and don’t always provide clear actions for GPs in order to provide ongoing patient care; and importantly medication information can be insufficient.

Amran Qurban, Head of GP Client Services, Luton & Dunstable University Hospital, NHS Foundation Trust said he was surprised to learn that junior doctors aren’t routinely taught how to complete a discharge summary effectively, or the important role they play to the continuity and safety of patient care. “We are seeing the benefits of digital information sharing through discharge summaries, and I am keen for all trust professionals to recognise their importance,” said. “I’m looking forward to making these videos a substantive part of our junior doctors’ induction programme and to feature them at education events within the trust.”

There are three videos in total, The videos cover benefits to patients, benefits to GPs and the challenges associated with discharge summaries.

NICE and the PRSB working together

The PRSB sits down with Alexia Tonnel, Director, Evidence Resources for The National Institute for Health and Care Excellence (NICE), to discuss the developing relationship between the two organisations.

Alex TonnelWhat do you think are the key links between PRSB and NICE?

Both of our organisations are committed to ensuring better and safer care for patients, by supporting clinicians to follow best practices. Information is an integral part of quality assurance, and it feeds into everything that care professionals do. Moving forward we would like to see record standards being informed by NICE recommendations.

How can these links improve the quality of clinical care?

Good digital care records should enable professionals to practice in line with NICE recommendations. Links between our organisations should improve the delivery of care and improve the sharing of relevant information between professionals. Over time we will also be able to generate better data about practice, such as audit data, which can inform future changes to NICE guidelines.

Are there areas of work we’re doing that you see as particularly relevant to your agenda?

NICE has a big portfolio, covering clinical care, public health and social care and as such most of the PRSB record standards work may be informed by a NICE guideline. Some of the work around standards for transfer of care may be particularly relevant to our few guidelines that focus on transition between care settings. We also have several guidelines for managing medication so we are interested in the work the PRSB is doing in this area of information sharing.

To what extent do issues around information sharing underpin the quality standards that NICE is addressing?

NICE’s recommendations are informed by available evidence about the clinical and cost effectiveness of care. They’re also informed by clinical expertise and patient or carer input. In some areas, the evidence can be scarce or unreliable, which means our committees may struggle to deliver a strong recommendation, for example about whether to use a new surgical intervention or a new diagnostic technology. Better recording and sharing of reliable care information could mean that, over time, we have access to more evidence linking practice and outcome.

How is better information sharing impacting quality and how can this be further developed/improved?

We depend on research to undertake our work, and all of our recommendations are based on scientific evidence. Through standardised information sharing, I think the research community can reduce the cycle time of reliable evidence being available about the effectiveness and cost effectiveness of new practice. It can also produce information about aspects of care for which traditional clinical trial-based research may not typically be undertaken or possible. Improved and standardised care records can mean more widespread, more reliable and more readily available ‘real world evidence’ to inform practice recommendations and to keep these updated.

Document naming standard survey now open

In order to produce a standard that meets the needs of health and care professionals, patients and document managers, the PRSB has brought together relevant stakeholders to examine some of these existing models. The project is being managed by the Royal College of Physicians’ Health Informatics Unit (HIU), in conjunction with the PRSB. The HIU has worked with stakeholders to develop a draft model which is now available for comment. You can participate in our survey here.

To find out more about this standard, contact