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Rebuilding the Broken Healthcare System: Empowering Patients with Data Ownership and Control


Each minute of our life is a lesson but most of us fail to read it. I thought I would just add my daily lessons & the lessons that I learned by seeing the people around here. So it may be useful for you and as memories for me.

In our current healthcare landscape, the need for a comprehensive overhaul is undeniable. From rising costs and administrative inefficiencies to data privacy concerns, the system is in dire need of transformation. Fortunately, the key to rebuilding a more robust and patient-centric healthcare system lies in placing the power back into the hands of the patients themselves.

One of the fundamental pillars of this transformation is the idea that patients should have full ownership of their health data. By granting patients the autonomy to access, manage, and share their own data, we can foster a sense of empowerment and engagement that is crucial for their overall well-being. When patients have control over their health data, they become active participants in their care journey, leading to better health outcomes and increased satisfaction with the healthcare process.

Moreover, it is imperative to ensure that patients have complete control over who can access their data and for what purpose. This approach not only safeguards patient privacy but also fosters a sense of trust between patients and healthcare providers. By allowing patients to dictate which providers, applications, and researchers can utilize their data, we can establish a more transparent and collaborative healthcare ecosystem that prioritizes patient preferences and values their consent.

Empowering patients to own their healthcare data is a critical step in enhancing transparency, fostering patient engagement, and promoting personalized care. Here are several key steps that can be implemented to ensure patients have ownership of their data:

  1. Data Access Portals: Implement user-friendly online portals that allow patients to access their medical records, test results, and treatment history easily.
  2. Data Download and Sharing Options: Provide patients with the ability to download their health data in a standardized, accessible format, enabling them to share it with other healthcare providers as needed.
  3. Consent Management Tools: Integrate consent management tools that enable patients to control who can access their data and for what specific purposes, ensuring transparency and privacy protection.
  4. Patient-Generated Data Integration: Enable patients to contribute data from personal health devices, such as wearable fitness trackers and smartwatches, to create a more comprehensive view of their health status.
  5. Education and Training Programs: Offer educational resources and training sessions to help patients understand the importance of owning their data, how to access it, and how to utilize it for better self-care and decision-making.
  6. Data Security Measures: Implement robust security protocols and encryption techniques to safeguard patient data from unauthorized access, ensuring compliance with privacy regulations such as HIPAA (Health Insurance Portability and Accountability Act) and GDPR (General Data Protection Regulation).
  7. Transparent Data Policies: Establish clear and transparent data policies that outline patients’ rights, data usage guidelines, and procedures for data access, sharing, and revocation of consent.
  8. Feedback Mechanisms: Create feedback channels where patients can provide input on data management processes, express concerns, and suggest improvements to enhance the overall patient experience and data ownership journey.
  9. Collaborative Decision-Making Tools: Develop platforms that facilitate collaborative decision-making between patients and healthcare providers, allowing patients to actively participate in treatment planning and goal-setting based on their personal health data.
  10. Long-Term Data Storage Options: Provide patients with the option to securely store their data for the long term, ensuring accessibility for future reference and continuity of care across different healthcare settings.

By integrating these steps into healthcare systems and practices, patients can take a more proactive role in managing their health, fostering a culture of patient empowerment, and ultimately contributing to the improvement of healthcare outcomes.

In this reimagined healthcare paradigm, the role of data usage and its impact on patient care cannot be overstated. By compensating patients based on how their data is used, we can create a fair and equitable system that acknowledges the value of their contributions. This approach not only incentivizes patients to actively participate in data sharing but also promotes a culture of mutual respect and reciprocity between patients, clinicians, and researchers.

For clinicians, the availability of comprehensive patient data is invaluable in making well-informed decisions and providing high-quality care. With access to a holistic view of a patient’s health history, clinicians can tailor their treatment plans, offer personalized interventions, and proactively address potential health concerns. The integration of patient data into clinical practice not only enhances the efficiency of healthcare delivery but also strengthens the patient-provider relationship, fostering a collaborative and patient-centric approach to care.

The journey towards rebuilding a broken healthcare system is a collective effort that requires the collaboration of healthcare providers, policymakers, and technology innovators. By placing patients at the center of this transformation and empowering them with data ownership and control, we can pave the way for a more inclusive, efficient, and patient-driven healthcare system that prioritizes the well-being and autonomy of every individual.

Through a concerted commitment to patient empowerment, data privacy, and collaborative care, we can lay the foundation for a healthcare ecosystem that not only delivers high-quality care but also fosters a culture of trust, transparency, and patient-centricity. It is time to rebuild our healthcare system, one that truly values and prioritizes the needs and rights of every patient.

Title: Rebuilding the Broken Healthcare System: Empowering Patients with Data Ownership and Control

In our current healthcare landscape, the need for a comprehensive overhaul is undeniable. From rising costs and administrative inefficiencies to data privacy concerns, the system is in dire need of transformation. Fortunately, the key to rebuilding a more robust and patient-centric healthcare system lies in placing the power back into the hands of the patients themselves.

One of the fundamental pillars of this transformation is the idea that patients should have full ownership of their health data. By granting patients the autonomy to access, manage, and share their own data, we can foster a sense of empowerment and engagement that is crucial for their overall well-being. When patients have control over their health data, they become active participants in their care journey, leading to better health outcomes and increased satisfaction with the healthcare process.

Moreover, it is imperative to ensure that patients have complete control over who can access their data and for what purpose. This approach not only safeguards patient privacy but also fosters a sense of trust between patients and healthcare providers. By allowing patients to dictate which providers, applications, and researchers can utilize their data, we can establish a more transparent and collaborative healthcare ecosystem that prioritizes patient preferences and values their consent.

In this reimagined healthcare paradigm, the role of data usage and its impact on patient care cannot be overstated. By compensating patients based on how their data is used, we can create a fair and equitable system that acknowledges the value of their contributions. This approach not only incentivizes patients to actively participate in data sharing but also promotes a culture of mutual respect and reciprocity between patients, clinicians, and researchers.

For clinicians, the availability of comprehensive patient data is invaluable in making well-informed decisions and providing high-quality care. With access to a holistic view of a patient’s health history, clinicians can tailor their treatment plans, offer personalized interventions, and proactively address potential health concerns. The integration of patient data into clinical practice not only enhances the efficiency of healthcare delivery but also strengthens the patient-provider relationship, fostering a collaborative and patient-centric approach to care.

The journey towards rebuilding a broken healthcare system is a collective effort that requires the collaboration of healthcare providers, policymakers, and technology innovators. By placing patients at the center of this transformation and empowering them with data ownership and control, we can pave the way for a more inclusive, efficient, and patient-driven healthcare system that prioritizes the well-being and autonomy of every individual.

Through a concerted commitment to patient empowerment, data privacy, and collaborative care, we can lay the foundation for a healthcare ecosystem that not only delivers high-quality care but also fosters a culture of trust, transparency, and patient-centricity. It is time to rebuild our healthcare system, one that truly values and prioritizes the needs and rights of every patient.

Join me in revolutionizing the future of healthcare. Together, we can create a system that prioritizes transparency, efficiency, and patient well-being.

If you wanna share your experiences, you can find me online in all your favorite places  LinkedIn and Facebook. Shoot me a DM, a tweet, a comment, or whatever works best for you. I’ll be the one trying to figure out how to read books and get better at playing ping pong at the same time.

 
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Posted by on April 8, 2023 in Experiences of Life.

 

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All you need to know about IM1 Integration


Each minute of our life is a lesson but most of us fail to read it. I thought I would just add my daily lessons & the lessons that I learned by seeing the people around here. So it may be useful for you and as memories for me.

The COVID-19 pandemic accelerated the convergence of several trends in the health care industry. In UK leading health systems view digital transformation as a way to become more consumer-friendly while simultaneously changing their operations, culture, and use of technology.

Health systems consider digital capabilities a path to fundamentally transform their relationship with consumers. Digital technologies have the potential to transform people’s health care and their experiences in consuming various PFS services – the biggest benefits being streamlining and efficiency.

The healthcare industry is both large and very tightly regulated to protect healthcare data. The result is that getting healthcare tools, applications approved for NHS systems integration means jumping through many hoops. In 2021 getting any new Healthcare app or service approved by the NHS is complicated. Firstly, because patient data must be protected, and secondly because there are so many people and services involved in the NHS that it can’t move as quickly it wants. The situation is further confused because responsibilities for the use of digital technology in the NHS is split between NHS England, NHS Digital, the Department of Health and Social Care, as well as others.

What the IM1 Pairing Integration is?

The IM1 Pairing Integration (IM1) is a technical tool and process that allows digital suppliers to directly talk to GP clinical systems (supplied by EMIS, Vision, TPP), both reading data from the systems and putting data into the systems. 

In simple terms it is a process that allows suppliers to integrate their system with any principal clinical system through an interface mechanism. It supports system standards and interoperability within local organisations and across local health and social care communities. You can find more information about each of the IM1 interfaces by downloading a copy of the interface mechanism fact sheet.

IM1 pairing standards can help integration with NHS Patient Facing Services. It also is a technical tool and process that allows digital suppliers to directly talk to GP clinical systems, both reading data from the systems and putting data into the systems.

NHS provides APIs to access various data resources, including:

  • Data held in GP systems
  • Data held in the Spine

The main challenge for app developers remains the minefield of standards and compliance that needs to be navigated for a new app to be successfully deployed .

Any consuming supplier can apply to ‘pair’ their service with any provider supplier system, but there are a number of prerequisites set out by NHS Digital that they must meet in order to be deemed compatible.

Following API standards support the integration of your systems with any principal clinical GP system using IM1. The API standards enable your system to access GP practice systems to perform following actions:

  • read patient information
  • extract information in bulk
  • enter data into your system

Start the IM1 Integration Journey:

After working with different Healthcare service provides on various roles as Quality Control Manager, Delivery Manager, Scrum Master and Operations Lead in last 15 years, I gained good Healthcare domain knowledge and also gained understanding and knowledge on IM1 Integration process and the steps involved in total implementation journey.

From my personal experience, the process is very robust, and for that reason can be incredibly frustrating and demotivating for many teams.. Adding in the complexity of different requirements from the separate clinical systems providers (EMIS, Tpp, Vision etc) , it can be a very demanding process. 

The process for integrating with IM1 is pretty well documented by NHS team which you can find on their official website. Any consuming supplier can apply to ‘pair’ their service with any provider supplier system, but there are a number of prerequisites set out by NHS Digital that they must meet in order to be deemed compatible.

The IM1 Integration starts with IM1 prerequisites form. Next step is mapping out what you’re trying to achieve, which is then transposed over to a SCAL (Supplier Conformance Assessment List). To establish clinical safety prerequisites are in place and confirmation that you can commit to information governance prerequisites in order to progress the onboarding process. 

Once your product has been deemed compatible, you’ll be asked to complete a Model Interface Licence with each of the provider suppliers, giving you access to a test environment using the unique provider supplier guidance.

The SCAL is used as the basis to communicate with NHS Digital, and outlines your product, with details of clinical and information governance (IG) use cases. NHS Digital then assesses whether your product is compatible with the IM1 API, and if so you are given access to an unsupported test environment to begin development. 

After development has completed in the unsupported test environment, you are given access to the supported environment, where you are able to agree the assurance approach with the clinical system providers before proceeding to the assurance stage.

Each clinical system provider has their own requirements for assurance, with differing levels of test cases and auditing requirements. Upon agreeing a date with each provider, we booked in for witness testing and presented the required test cases and information to each separately. 

From that point, the provider signs off assurance from their perspective, then NHS Digital does assurance on their end which involves differing levels of sign off in relation to information governance and clinical safety.

Once NHS Digital has signed off the assurance, a recommendation to connect notice is sent across to the clinical system provider and arrangements are made to move across to the live environment.

Integration pairings

In order to join the list of assured suppliers, your product will need to ‘pair’ with one of the following specific APIs for each GP practice system supplier:

  • Patient API: this API allows patients or an authorised representative to book, request, view, amend and cancel appointments or repeat prescriptions, and allows patients to communicate with GP practices directly.
    • view available appointments
    • book an appointment
    • amend or cancel an appointment
    • view their repeat medication
    • request a repeat prescription
    • amend or cancel a prescription request
    • view their medical record
    • communicate with the GP practice
  • Transaction API: with the patient and GP practice system’s permission, this API gives medical professionals access to a whole host of real-time information, ranging from retrieving attachments from a patient’s medical records to creating a new consultation record.
    • search for a patient
    • retrieve and update patient demographics
    • retrieve a full patient medical record
    • file data to a patient record
    • retrieve a patient consultation record
    • create a new patient consultation record
    • add a document or attachment to a consultation record
    • retrieve documents from a patient Record
    • file documents into a patient record
    • retrieve an attachment from the patient’s medical record.
    • retrieve a list of all the attachments residing in the patient’s medical record
    • retrieve a list of patients whose registration details have changed
    • retrieve the list of active users from a given organisation
    • delete data from a patient’s record
    • retrieve appointment slots
    • access diary information
    • query details of free slots in the appointment book
    • extract CSV files
  • Bulk API: once GP practice consent has been obtained, this API empowers your application to gain daily, weekly or monthly extracts of bulk data feeds of patient or clinical system user data. The mechanisms for delivery of data will vary by system supplier.
  • Partner API: similar to the Transaction API, this API offers more up to date information about patients that may have changed since the last query was made e.g. age, sex or the status of an appointment. This API is only applicable with the EMIS Web GP module and to practices based within England. Note that the EMIS Community module is not available currently via IM1. 
    • a single patient demographic and medical record
    • a list of patients – for example, for finding or searching for patients
    • a list of patients with appointments booked
    • a list of patients to update, and age or sex register output
    • information about the organisation or users
    • a list of patient registration details for patients that have changed since the last query
    • appointment and appointment configuration information
    • retrieval of documents from a patient record
    • filing of documents into a patient record
    • retrieval of an attachment from a patient’s medical record
    • retrieval of a list of all the attachments in a patient’s medical record
    • booking and cancellation of appointments
    • setting an appointment’s status
    • viewing a patient’s arrived and sent-in status

All the above information is gathered from various reliable Healthcare sites and from the my experience as a Agile Delivery Manager by working for various clients.

There are many challenges to building a software solution for the healthcare sector. Any application requiring NHS integration must meet strict NHS digital technical healthcare standards to gain compliance and approval. Any error in assuring the product during the onboarding process can result in costly delays.

Before beginning the integration process, you will need to formulate a realistic project plan and understand if this is something your customers are happy to pay for. This process can take several months to a year or more, so the investment is high and the thresholds for sign-off are tough, understandably so. Make sure your project team is heavy in good communicators, technical knowledge (ideally with health expertise), and those who are adaptable and can pivot if needed.

I hope you have found the information helpful for starting your journey with the IM1 framework. Good luck 🍀

Some Important links and references:

https://digital.nhs.uk/services/api-platform

https://developer.nhs.uk/apis/gpconnect-0-5-3/index.html

https://6b.digital/insights/what-is-nhs-im1-interface-mechanism

https://gpitbjss.atlassian.net/wiki/spaces/DCSDCS/overview?homepageId=11995152703

https://digital.nhs.uk/developer/api-catalogue/interface-mechanism-1-standards

https://digital.nhs.uk/services/gp-it-futures-systems/im1-pairing-integration#process

https://github.com/NHSDigital/nhs-app-sample-web-integration

https://github.com/NHSDigital/nhs-app-api

If you wanna share your experiences, you can find me online in all your favorite places  LinkedIn and Facebook. Shoot me a DM, a tweet, a comment, or whatever works best for you. I’ll be the one trying to figure out how to read books and get better at playing ping pong at the same time.

 
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Posted by on December 16, 2021 in Technical, Work Place

 

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