Shared Care (integrated digital care) Record

As a social enterprise, Patients Know Best (PKB) created the world’s first patient-controlled medical records platform which is now recognised as the leading health information exchange provided by a patient portal. According to a global survey commissioned by the UK Department of Health (see www.tinyurl.com/pkbpif), PKB is the only provider of record access that meets full 4/4 criteria for integrated care. The platform allows integrated care to become a reality.

PKB is hosted on the secure NHS Health and Social Care Network (HSCN) - formerly the N3 network - , making it a secure and trusted provider and has resulted in the platform being the most widely integrated system in the UK. The secure servers are accessible from any internet-enabled device such as a tablet, computer and smartphone for use by individuals, clinical institutions, Local Authorities, Charities, Advocacy organisations, Social Enterprises and other organisations involved in the care of patients.

PKB’s web based patient portal user interface has been deployed across a diverse set of specialities and regions, such as end-of-life care, oncology, rare-diseases, long-term conditions, mental health, and proactive health and wellbeing programmes. It has been used and has functionality for:

• Produce, send and analyse surveys, questionnaires or assessments, for example the Friends and Family Test, standardised outcome measures, well being questionnaires, PROMS and PREMS
• Ability to produce an unlimited number of bespoke care plan templates that can cover treatment, self-management, outcomes, therapy plans, assessment and discharge information etc. Care plans built in HTML and can include educational videos, pictures and documents. Designed to complement or replace existing paper-based approaches.
• Messaging between patient-healthcare professional and professional-professional, with the ability to attach pictures, videos or documentation
• Web video between patient-healthcare professional (i.e. virtual clinics) and professional-professional (e.g. MDT meetings), with the session documented in a secure environment
• Symptom tracking with alerts for professionals – patients can remotely track a predefined list of symptoms and have thresholds set for alarms to notify professionals of deterioration in wellbeing
• Resource library that can be customised for each team and have entries added by patients, carers or professionals
• Appointment booking (if necessary) and reminders
• Send letters and reports electronically, to multiple users, remotely and securely
• Capture information for national datasets, e.g. HARS (HIV and AIDS Reporting System), NDTMS, IAPT minimum dataset
• Ability to download and analyse data from surveys and care plans to assess clinical outcomes and audit the service, using external data analytic tools
• Patient can send home measurements back to record, e.g. blood glucose readings, blood pressure, diet and activity information. PKB already integrated with over 100+ devices and apps.
• Integration with any other third party apps or devices and bespoke software, where necessary/possible via REST APIs

PKB takes a copy of all the health information held about an individual and creates one integrated patient-controlled record. The patient or a professional (with consent from the patient) can invite whomever they want to the record, from clinicians to carers as well as charities and support groups. This brings together all care providers from community care, to primary and acute care providers. Patients can view their contacts and message groups of them via the Discussion tab. The site encourages self-management with care planning and medication information available at any time. Our integration with over 100 apps and devices, as well as symptom trackers and surveys sent out by the clinician, allows the patient to monitor their health and wellbeing.

PKB can also be used to collect patient-reported data/outcomes to help build effective registries and combine this data with professionally reported data - all available for download by a member of the relevant team. This allows analytics to be performed by trusted organisations and why it is being used on large-scale deployments by, for example, The Peter Sowerby Foundation as part of the evaluation of the North West London Care Information Exchange. As such, it is an ideal turnkey solution for a patient portal that can be configured for a wide range of out-of-the-box features at scale for the surrounding health economy. Although PKB is a holistic package with numerous features, it can be tailored to meet the precise requirements and as such can offer a future-proof and scalable platform to meet the short, medium and long-term aspirations of the Trust.

PKB can be the whole vertical stack from Integrated Digital Care Record (IDCR), data storage, patient portal, personal health record or sit on top of clinician-facing IDCR with PKB’s consent layer driving permissions. PKB is translated into 19 languages, and used in 54 sites across 8 countries.

This extensive feature set results in direct cash-releasing benefits and improved outcomes; through workflow efficiencies for healthcare professionals, and improved clinical outcomes and patient experience for the customer. Efficiencies are wide ranging; from providing a paperless service and remote consultations, to a reduction in unplanned episodes of care, service burden and increased throughput.

PKB is also used to collect patient-reported data/outcomes to help build effective registries and combine this data with professionally reported data. This allows analytics to be performed by trusted organisations- a key reason why PKB is being used in large-scale deployments such as the North West London Care Information Exchange, evaluated by The Peter Sowerby Foundation.

PKB is a social enterprise working for the benefit of patients, established as a UK B Corporation (http://tinyurl.com/pkb-bcorp) also recognized by Ashoka, UnLtd, and the National Lottery’s Big Venture Challenge through awards due to our focus on patient care and trustworthiness to store patients’ data.

By using interoperability standards, open APIs and a common framework, Patients Know Best is an innovative solution addressing the challenges of working with healthcare, commercial and consumer technologies.