Patient-Reported Outcomes for Better Care, Better Research – what next?
26 February 2021 | Author: Alice Turnbull, Director of Programme Delivery and Integration
At the end of last year, I was privileged to co-chair the inaugural “PROs for Better Care, Better Research” round table, convened by HDR UK, Better Care community in partnership with the Trials Methodology Research Partnership (TMRP).
The event brought together over 40 attendees from across academia, industry, policy and most importantly patient groups, to discuss the exciting potential and key challenges that face the effective implementation of Patient Reported Outcomes (PROs) in routine clinical 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.
This need to balance multiple demands was further reiterated by Paula Williamson who discussed how PROs are often included in core outcome sets (COS) which can be developed with both research and routine care in mind, particularly when patients have participated in the development of COS. She shared her experience of the challenges in defining and agreeing how to measure PROs through the COMET initiative but also highlighted the potential for the data on PROs measured in routine care to be used in research.
Given this widespread demand for PRO data and the patient burden of data collection it is critical to “Make every interaction count”, a key point noted by Mel Calvert (University of Birmingham) in her opening talk. “We must ensure the data collection, analysis and reporting is designed in a way that ensures all data can be used to maximum effect” noted Mel. This highlights a key challenge and priority for the successful deployment of PRO in routine practice, namely the technical standards and requirements needed to integrate PRO data into routine health records.
As noted by Keith Bodger from the IBD registry, who has worked to incorporate PROs into the registry’s data collection, the different Electronic Health Record (EHR) systems and the variation in technical maturity of different centres of care can pose key challenges for widespread implementation.
There are several groups working to address the implementation challenges, for example the AmbuFlex telePRO work developed in Denmark, the Value Based Healthcare system being pioneered by Sally Lewis in Wales and PROs deployed across the Birmingham network for renal care, trauma and many other key specialties. However, PROs are still an area which offer significant growth potential over the coming years and now is the time to get the implementation principles right.
From a personal perspective the opportunity to use PROs to improve care at the patient-level is incredible, allowing us to tailor practice to an individual patient’s needs, monitor symptoms in real-time, detect potential issues at the earliest possible stage and flexibly schedule clinical appointments in response to a patient’s current condition. PROs offer the potential to empower each and every one of us to take ownership of our health and consider how our data is used.
Two key areas highlighted in the meeting and where concerted efforts could really add value are:
- Defining the important concepts to measure, how to measure them in routine care, and how to optimise data collection, in collaboration with patients and their clinicians.
- Identifying and agreeing the technical standards and requirements for widespread implementation and interoperability with EHRs.
Both areas are complementary and must be closely integrated but both represent huge challenges in their own right and can only be addressed through collaboration and co-operation across disciplines.
On the former, HDR UK and TMRP are working together to ensure a strong evidence base is developed for the 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 with firstname.lastname@example.org or email@example.com.
On the latter, we are setting up a Special Interest Group in collaboration with the Faculty of Clinical Informatics, as an opportunity to work across professional bodies, technical experts and those who are implementing PROs in practice to define best practice for data standards and key requirements. If anyone would be interested in learning more about this initiative or getting involved, please do get in touch with firstname.lastname@example.org or email@example.com.
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…Otherwise, watch this space to hear more!
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