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This project saw NHS Wales Informatics Service (NWIS), Value Based Health Care (VBHC), Patients Know Best (PKB) and Dr Doctor (DrDr) collaborate to improve the process around the collection and storage of PROMs data.

hands writing on paper

Overview:

With the Ecosystem team based at NWIS leading the development, and with the guidance of VBHC, the team has worked with PKB and DrDr to create a proof-of-concept (POC) for a robust technical solution to enhance the PROMS process.

Objective:

By creating a POC together, the team aimed to test the feasibility of collecting and storing PROMs data into a central repository regardless of the original source and to better understand the technical and business limitations that would arise if such a solution was taken to production.

The eventual goal is to enable gathering more data about patient outcomes which can be used to develop new care models.

With the correct patient data streamlined and used effectively, it is hoped that this could ultimately enhance the patient experience and quality of treatment.

Matthew Steer, Product Manager at DrDr, said:

“It's been obvious all along that PROM results should be part of the electronic patient record and would also be invaluable as part of a central PROMs dataset for research and development.

“We wanted to make sure that our approach to making PROMs and other data available through FHIR standard APIs was the best one for this project and similar data initiatives in future.”

Industry challenges:

The team set out to improve the PROMs process, as there is currently variation in how patient data is collected. Different systems are used across the NHS in Wales, with limited integration or mechanisms for extracting the data.

This causes problems for researchers and clinicians who want to look at and understand PROMS data to identify common trends in treatments, such as success rate, and impact of the medical intervention on a patient’s quality of life. 

The team concluded that as there were likely to be multiple providers of PROMS information across the different systems and Health Boards, they wanted to set clear FHIR-based standard for making data available. This would simplify the gathering and evaluating of the PROMs data.

In order to address these industry-wide challenges, the partners worked together towards creating a standard for Wales regarding collecting PROMs.

This would include guidance on the quality of the data - for example what data is collected and its structure. There would also be standards for the communications between the different systems to create mutual interoperability. 

Strategy:

The main focus of the project began in January 2020, following initial planning between the partners and there is still some work ongoing.

The Ecosystem team at NWIS led the development, with DrDr dedicating a small development team to building a FHIR API to make its PROMs data available to DHEW.

As part of the project, NWIS evaluated a prototype solution, which consisted of two main phases of work. The first phase for the team involved creating an application that can retrieve and transform PROMs from suppliers and import them into the existing National PROMs solution developed by NWIS.

The benefit of this approach is that these will be picked up by existing processes and made available for analysis.

The team then worked on the second phase, developing a standard that will ensure the data collected is consistent, with those who adhere to it being reassured that they are collecting the correct data.

Collaboration:

With teams from the partners spread out across the UK, Slack was used as a messaging platform to discuss challenges, progress, and actions within the project team.

Thanks to their flexible and dedicated approach, the teams were able to collaborate effectively, which enabled them to successfully continue their joint project while based in different locations.

Progress so far:

During the discovery phase the team realised that creating a strategy was a far easier process than implementing it.

It became evident that a single solution for all different types of PROMs was impossible. This is because PROMs are predefined tools, often created by different people and organisations and often bound by copyrights.

The team found out that even publishing a standard for each separate type of PROM would be a hard task as this might infringe on existing license agreements by indirectly disclosing the structure of the PROM.

Boris, Lead Software Developer at NWIS, said:

“We have come to realise that whilst the plan of action is quite simple and straightforward, there are a lot of moving parts when it comes to carrying out the tasks.

“We have been able to identify what exactly are the current technical limitations for all parties involved. This gives us the ability to better estimate timescales and resources that will be needed when a proper solution is developed.”

Benefit:

Having a single dataset of PROMs data representing the whole population of Wales will be an important and useful resource for developing value-based care models in the future.

In the future, as tech companies make patient-provided data available for centralisation through FHIR standard APIs, this model will become the new way of ensuring interoperability and mitigating vendor lock-in.

Having a FHIR standard will enable the project’s contributors to present it to the Welsh Technical Standard’s Board and to the UK Core FHIR profiles initiative with the possibility of creating a standard for the UK.

Ultimately, this will support clinicians and researchers to make better decisions and allow analysis to be based on a bigger and more complete dataset.

This project has also been crucial in terms of providing an approach, while also identifying and addressing any challenges that occur.

Next Stage:

With the project still ongoing, the next stage will require guidance from Value Based Health Care as to when and how NWIS should progress with the POC solution. Currently, DrDr already has healthcare providers in England consuming PROMs data from the API into their own systems.