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Personal Online Data Stores (PODS)

Greater Manchester Digital Platform programme is testing out the concept of SOLID technology to create personal online data stores for health records

5.1 - User Profile

What is it?

The GM Digital Platform, has joined forces with Janeiro Digital and Inrupt who are currently the only vendors at the forefront of new decentralised web technology. 

Together we aim to test a Personal Online Data Store so people can hold their health and social care records. They will be able to edit and upload other information so they can use them to improve their health, have more control over their personal health and to manage long-term conditions/outcomes based on self-management of care. It also allows health care professionals to better understand the patient and carers needs. 

Why is it needed?

Patients sometimes feel a disconnect between themselves and the healthcare information that is kept about them and typically on multiple systems across various care settings.

This often results in people having to retell their story to care providers who do not have shared or up to date information. 

People would like a way to manage their health record data that will allow them to add information they feel is important to share.  This information can then, at the person's wishes, be shared with friends and family involved in their care and wellbeing.  Once available the patient is able to share this further with their GP, Community and Acute services where systems across the localities are not connected. 

Objectives

  • To provide a unified place to store a patient’s personal health data that can be securely launched from anywhere, providing access to the majority of their personal health data in a standard, open format
  • The patient must have control of who and which systems can access the data, letting them securely share limited pieces of information with other people, organizations, applications, and services.  They can rescind this access at any time.
  • Once data is stored in the PODS, it should be immediately available for secondary use, subject to patient consent. 
  • Enable the update and use of self-monitoring tools, wearables activity, nutrition, and more.
  • Allow storage of images, videos and audio.

 

How Does it work? 

Janeiro Digital has partnered with Inrupt, an organisation which provides an Enterprise Solid Service (ESS). This interfaces with key Janeiro Digital proprietary technologies to provide the only PODS based solution specifically designed for health care systems. 

The technology promises to give people complete control over the people, services, and applications they share it with.

PODS can be hosted in various places, by different providers, or by individuals themselves. 

 

Benefits

  • It enables patients and carers to manage long-term conditions and record results and comments into the record. 
  • It prevents patients and carers having to repeat their conditions multiple times to health care professionals.
  • Provides details of future appointments which aid travel planning, particularly for those reliant on family or friends for transport.
  • Patient’s wishes and needs are recorded and shared with relevant health care professionals
  • Permanent and portable access to assessments and care plans. 
  • Allows the use of standard assessment tools for care pathways and specific patient condition questionnaires
  • Can connect to other health apps, record results and share with their clinical/care team  

What's happening now?

We are carrying out a small project to test a person held record for dementia patients to determine how this Enterprise Solid Service (ESS) technology can be used.

We will evaluate the outcomes in line with a potential roll our across Greater Manchester. 

 

Privacy notice

This Privacy Notice relates to the Personal Online Data Stores (PODs) provided by Salford Royal NHS Foundation Trust through your GP Practice. The initial Proof of Concept (PoC) is being piloted for several GP Practices with a handful of patients with the objective of gaining feedback from the GP, Patients and their Carers (i.e. Family Members with Health and Welfare agreements) as they will be sharing the patient entered on-line data. Access to your POD whether you are a patient, GP or carer is via NHS Login, which is the NHS’s secure authentication method for allowing patient’s to securely view their allergies, long-term conditions and medications that are in the GP system through the POD and also allows you to share information back with your GP and carers through the descriptive ‘All About Me’ form contained within the POD.

Whenever you provide personal information to a third party, that party is legally obliged to use your information in line with data protection law. 

To read our privacy notice in full go to PODs Privacy notice

 

5.1 - User Profile