If you’ve ever had a serious treatment or procedure done, you might have been asked to fill out a questionnaire and rate your recovery after the fact. These questionnaires are called Patient Recorded Outcome Measures (PROMs) and they come in various shapes and sizes.
Depending on where you’ve had your treatment you might have been asked to fill out a paper form, complete an online questionnaire or you might have been asked to simply provide your clinician with feedback over the phone. While this is very convenient it does create a big problem with consistency. Although data is collected, it is not standardised, and it cannot be easily shared between researchers and clinicians.
NHS Wales has increasingly been making use of PROMs to measure and improve clinical outcomes. A good amount of the data is collected through the National PROMs platform, however, PROMs responses are also recorded through third party systems and these responses cannot currently be distributed to other systems for research and development purposes. The National PROMs platform has processes in place to safely and securely share this data, first by anonymising the data and then distributing it through secure channels. This is why the Digital Health Ecosystem Wales team (DHEW) embarked on a project to research and develop a proof-of-concept on the feasibility of integrating third party PROMs into the National PROMs platform.
The effective capture of PROMs data would benefit the long-term NHS Wales Strategy – “A healthier Wales” - that includes Value-Based Healthcare (VBHC). This data is required to feed the digital dashboards and visualisation tools being developed as part of the VBHC programme benefiting researchers as well as NHS Wales.
To develop our proof of concept (POC) we collaborated with DrDoctor and Patients Know Best and we used test data provided through their brand new FHIR APIs. If you haven’t come across FHIR before, it stands for Fast Healthcare Interoperability Resources and is a healthcare standard which effectively describes what your data should look like. It is developed by HL7 and if you are doing anything with healthcare, we recommend you check it out!
After only a few months of working together, we developed a client, which can pull Inflammatory Bowel Disease (IBD) PROMs from different versions of the FHIR standard, R3 and R4. We also demonstrated that these externally sourced PROMs could be integrated into the National PROMs system. The benefit of doing this is that data is now available to be distributed to all systems which are already using the National PROMs platform for research and development purposes.
Without going into too many technical details, there were three main problems we had to solve.
- Extraction: We created a .NET Core console application which can be run on-demand, set up as a scheduled job or even run in the cloud on its own or in a container. The client only pulls new data and onboarding new suppliers is entirely configuration based, which means there is no need for extra development.
- Transformation: DrDoctor and PKB were using different versions of the FHIR standard and we realised the need for a pre-defined FHIR Resource for each questionnaire type (e.g. Inflammatory Bowel Disease (IBD), Oxford Knee Score, etc.) To tackle this problem, we created our own R4 QuestionnaireResponse FHIR Resource. We also shared this with the UK Core FHIR Profiles group which aims to define a standard set of profiles for the whole of the UK. We then created our own custom .NET FHIR mapper, which can handle either version and transforms IBD PROMs collected from DrDoctor and PKB to our own version. Again, we made the effort to create a mapper which is entirely configuration based and there will not be any need for development when onboarding another third party PROMs supplier.
- Loading: Because we created our own version of the QuestionnaireResponse we only need to define a single mapping operation from the newly transformed IBD to the National PROMs. From there data can be made available to all systems which already use the National PROMs platform such as Welsh Clinical Portal (WCP). To test the integration was successful, we confirmed that PROMs coming from third party suppliers can be saved in the Welsh Care Record Service and rendered back as a PDF documents using the existing processes.
In conclusion, as a direct result of our collaboration with DrDoctor and PKB, we managed to identify and raise several key points when considering the integration of third party PROMs. A big thing to take away is the benefits of using FHIR Resources to define standards for PROMs data. Defining the structure and usage of PROMs questionnaires would allow NHS Wales to share the definition through Data Standards Change Notifications with all PROMs suppliers making it easier for them to understand data standards requirements and validate their compliance with it. This would greatly benefit NHS Wales as it would reduce the burden of integration, improve data quality through consistency and allow greater flexibility in what applications are used to collect PROMs data.