At the end oflast year, I was privileged toco-theinaugural “PROs for Better Care, Better Research” round table,convened by 51, Better Care communityin partnership with the (ղѸ).
The event brought togetherover40attendees from across academia, industry, policy and most importantly patientgroups,to discuss the exciting potential and key challenges that face the effective implementation of Patient Reported Outcomes (PROs) inroutineclinical practice.
PROs represent a key opportunity to deliver “Better Care” for patients, practitioners and the public, however one thing that was clear from the meeting outset was that many stakeholders are interested in the design and deployment of PROs, all with slightly different priorities. This ranges from regulators and Health Technology Agencies who require research evidence, often on disease specific PROs from validated measurement instruments, capturing both the benefit, harm and economic outcomes of any intervention; clinicians who demand data which is clinically relevant, straightforward to collect and easily interpreted; and most importantly patients who actually submit these data and want PROs to capture concepts that are relevant to them, can be completed with a low burden and provide information with clear potential to impact on their care. This wide group who, as flagged by Tom Willgoss from Roche, sometimes bring competing priorities can make it challenging to define “what” PROs should measure and “how” these data are best captured.
Thisneed to balance multiple demands wasfurtherreiteratedbyPaula Williamsonwhodiscussed howPROsare often included incore outcomesets (COS)which can be developed withboth research and routine carein mind,particularly when patients have participated in the development of COS.Sheshared her experience of thechallenges in defining and agreeinghow tomeasurePROsthroughthebut also highlighted the potential for the data on PROs measured in routine care to be used in research.
Given this widespreaddemand forPROdata and the patient burden ofdatacollectionit is critical to “Make every interaction count”, a key pointnotedbyin her opening talk.“We must ensure the data collection, analysis and reporting is designed in a way that ensures all data can be usedtomaximum effect” noted Mel.This highlights a keychallengeand priorityfor the successful deployment of PRO in routine practice, namelythetechnicalstandardsandrequirements neededtointegrate PRO dataintoroutine health records.
Asnotedby,whohasworked toincorporatePROsinto the registry’sdata collection, thedifferentElectronic Health Record (EHR) systems and thevariation intechnical maturity of different centres of care can pose key challengesforwidespread implementation.
There areseveral groups working to address the implementation challenges, for example thedeveloped in Denmark, thebeing pioneered by Sally Lewis in Wales andforrenal care,traumaandmanyotherkey specialties. However,PROs are stillan area which offersignificant growthpotentialover the coming yearsand now is the time to get theimplementationprinciples right.
From a personalperspectivethe opportunity to use PROs to improve care atthe patient-levelis incredible,allowing ustotailorpracticeto an individualpatient’s needs, monitorsymptoms in real-time,detect potential issuesat the earliest possible stageand flexiblyscheduleclinical appointmentsin response toapatient’s current condition. PROs offerthe potential toempowereach and everyone of usto take ownership ofour healthandconsider how our data is used.
Two key areashighlighted in the meeting and whereconcerted efforts could really add valueare:
- Defining theimportantconceptsto measure,how to measure themin routine care, and how to optimise data collection, in collaboration with patients and their clinicians.
- Identifying and agreeingthetechnicalstandards andrequirementsfor widespread implementationand interoperabilitywith EHRs.
Bothareasare complementary and must be closely integrated but bothrepresent huge challengesin their own rightandcan only be addressed through collaboration and co-operation across disciplines.
On the former, 51 and TMRP are working together to ensurea strongevidence baseis developedforthe choice of PRO instrument and the mode of data collection.If anyone would be interested in learning more about this initiative or getting involved, please do get in touch withprw@liv.ac.ukoralice.turnbull@hdruk.ac.uk.
On the latter,we aresetting up aSpecial Interest Group in collaboration with the, as an opportunity to work across professional bodies, technical experts and thosewho areimplementing PROs in practice to define best practicefor data standardsand key requirements. If anyone would be interested in learning more about this initiative or getting involved, please do get in touch with sally.lewis2@wales.nhs.ukoralice.turnbull@hdruk.ac.uk.
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…Otherwise, watch this space to hear more!
