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NHS England - Transformation Directorate

Giving patients with intestinal failure access to their personal health record

St Mark’s Hospital in Harrow, is a national and international referral centre for intestinal and colorectal disorders. The Trust was interested in implementing a personal health record (PHR) which would permit information sharing between different organisations.


Implementation of a PHR was of particular interest, as it would support continuity of care when patients transitioned to St Mark’s intestinal failure service from Great Ormond Street Hospital (GOSH).


To implement a PHR for all patients in the intestinal failure service.

Solution and impact

In 2011, St Mark’s Hospital began to implement a PHR provided by Patients Know Best (PKB).

Patients using the PHR can view test results and message clinicians, including sending photos and videos, to obtain clinical opinions. This saves time for patients, as they do not need to phone or visit the hospital. Viewing test results quickly also reduces patient anxiety, as does being able to monitor trends in results over time.

Being able to view information across care providers helps patients share information with clinicians when they transition or move between hospitals.

Over a period of 18 months, 119 home intestinal failure patients on home parenteral nutrition were registered with PKB.

There were 5,015 unique electronic conversations recorded for this group of patients, which would have otherwise been telephone conversations. PKB has been used for 4 patients transitioning from paediatric to adult services and 2 patients from abroad. Other patients invited included 128 outside clinicians (such as local nutrition nurses and dietitians, and transplant coordinators) and 29 carers.

A survey of 58 intestinal failure patients on home parenteral nutrition patients found PKB useful in managing their long-term condition.


  • PKB is a web-based patient management portal. Patients are set up with an account to log into the website where they can view their record
  • Where PKB is used by multiple care providers, they each transfer information into the PHR, where the patient can access records from all care providers
  • Patients have control over what individual healthcare professionals can access


  • PKB acts as a single secure PHR, whereby all stakeholders are connected with the patient, who is in control at the centre
  • PKB can integrate with existing health and care systems through open application programming interfaces (APIs)
  • All of the APIs in PKB are HL7 compliant but other systems need to be configured to allow them to connect with PKB


PKB is a portal intended to be used by subscribed healthcare providers and patients to share clinical and administrative information.

Key learning points

It is important to demonstrate benefits to clinicians and patients in order to engage them.

Open APIs are essential for integration with other electronic systems. GOSH had to move away from using PKB, as their main clinical systems programme would not support interoperability with PKB.

Measures need to be implemented to prevent potentially worrying results being shared before clinicians are able to discuss the results with patients.

Automated information sharing between electronic patient records and PHRs is needed to reduce administrative burden.

Key figures/quotes

“It saves patients time and reduces their anxiety. For example, where a patient has a tunnelled central venous catheter or stoma and a possible infection or swelling, they can securely upload a photo for us to look at and we can often provide advice without them having to come in or get appropriate investigations and treatment more rapidly.”
Simon Gabe, consultant gastroenterologist, St Mark’s Hospital

Find out more

Read more about managing complex conditions across geographical boundaries

Read the Royal College of Physicians PHR case study from St Mark’s Hospital (PDF, 1.2MB)

Read about patient satisfaction in relation to an electronic PHR for those on home parenteral nutrition

Key contact

Simon Gabe, consultant gastroenterologist, St Mark’s Hospital

Supplier: Patients Know Best