An article written by Anji Kingman as part of an occasional series for the National PROMs Network
In the dynamic world of healthcare, Patient-Reported Outcome Measures (PROMs) offer tremendous potential. This reflection dives into the challenges we face and explores potential solutions in the realm of PROMs.
Shifting Focus: Beyond Tools to Logistics and Culture
Our journey needs to move beyond mere tool fixation to concentrate on logistics, engagement, and fostering a culture of PROMs and Patient-Reported Experience Measures (PREMs) collection. Successful initiatives, such as that of the Northumbria Healthcare orthopaedics department, highlight the power of teamwork and organisation wide commitment to embedding PROMs into patient pathways.
The Current Landscape: Seeking Consensus
PROMs play a crucial role in understanding a patient’s health from their perspective, particularly in surgical interventions. Despite the widespread influence on patient-physician communication and decision-making, the lack of consensus in standardised PROMs collection leads to fragmented data storage. A significant challenge arises as the data is not available in real time to hospitals, services, and surgeons. Consequently, when clinicians seek their own data for monitoring patient progress, they must duplicate the effort in an in-house system by copying baseline data and extending follow-up times. Patients undergoing orthopaedic surgeries often face multiple PROMs requests from various sources, including individual clinicians, trusts, specialist society registries, research & development studies and more. This leads to duplicated efforts and siloed data, hindering the creation of a unified view of patient experiences. Most patients are willing to provide their responses once, with consent to share the relevant data with involved parties who need it and recognise the value of contributing to data that improves treatments. However, the current situation often leaves patients confused and overwhelmed, unsure about which questionnaire they completed and for whom. This confusion results in one or more parties losing out, affecting patients both in the present and in the future.
Recent Developments: Addressing the Need for Change
The Cumberlege ‘First Do No Harm’ report recommended “Patient reported measures such as Patient Reported Outcome Measures (PROMs) and Patient Reported Experience Measures (PREMs) should become common currency in the assessment of the benefits and risks of current and new interventions” and that “Every interaction the patient has with a health service provider should be captured once only and by one or other data subset, ideally in the electronic health record. The NHS number should be included to enable those subsets to be linked. “This endorsement of PROMs and PREMs as essential tools in assessing interventions received government support. However, the path to streamlined data capture, remains a gradual process.
The national trainee led audit “Evaluating the Measures in Patient Reported Outcomes, Values, and Experiences” (EMPROVE) in association with the National PROMs Network, evaluated the frequency and methodology of PROMs collection in common orthopaedic procedures, across all orthopaedic sub-specialities. It involved a multicentred observation of practice audit across thirty-eight hospitals in the United Kingdom. While the national PROMs program demonstrated more frequent and standardised reporting, the overall PROMs collection outside incentivised schemes displayed considerable variability. The lack of feedback to providers and varying methods of PROMs collection, including paper-based and electronic formats, underscore the challenges faced in achieving a cohesive approach. The study advocates for stronger guidance, clinician education, increased funding, and staffing resources to improve PROMs utilisation in orthopaedics. Additionally, the potential shift towards digitisation of PROMs is considered, with a recognition of the challenges related to data privacy and inclusivity.
Towards a Solution: Introducing openOutcomes.
The principle behind openOutcomes™ involves collecting data locally, meeting patient preferences, and establishing trust. This revolutionary digital platform, built on the openEHR standard, it is flexible, interoperable, and “speciality and care pathway agnostic,” ensuring flexibility for any medical specialty. Patient engagement is elevated through multiple input methods including tablets, web browsers, and even paper for non-digital users. NHS Trusts, ICSs, private healthcare providers, and device manufacturers can implement it through accredited professional services partners. Managed by The Apperta Foundation™, openOutcomes™ remains a collaborative tool driven by user feedback.
A Call for Standardisation and Collaboration
While multiple good PROMs solutions exist, vendor lock-in and siloed data prevail, but collective expertise is crucial for a real solution. We need standardised PROMs solutions envisioning real-time, accessible data that feeds into national registries seamlessly. However, this dream is only achievable through collaboration.
National PROMs Network: Collaborating for Better Healthcare
The National PROMs Network is emerging as a collaborative haven for individuals involved in PROMs. Initially focused on orthopaedics, it has evolved to include diverse specialties. Surgeons, managers, nurses, researchers, and more collaborate to standardise PROMs practices nationwide. Transparent, effective utilisation of PROMs is the goal, uniting healthcare stakeholders in a shared vision.
In our pursuit of enhanced healthcare, the path may be challenging, but the endeavour is worth it, and we must strive for standardised, comprehensive PROMs practices—for the benefit of all!