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The patient is always right: Extracting the full value of PROMs

Published on 29/07/19 at 11:52am

Patient-reported outcomes measures are an invaluable tool in ensuring that the patient remains in the driving seat when it comes to their own care. But are they really hitting the mark in today’s healthcare systems? Matt Fellows investigates...

The traditional model of healthcare, particularly in the UK, has calcified over time into a train of decision-making where the most important voice – the patient’s themselves – has been largely excluded from the key discussions. In a world where popular professional thought is gravitating increasingly towards the notion of a more personalised approach to treating patients, the value of the patient voice and their agency in driving their own healthcare is being increasingly recognised.

Often taking the form of a questionnaire or other method for collecting patient input, patient-reported outcomes measures, or PROMs, are a key cornerstone in vocalising and taking the patient voice into account when it comes to decision-making in healthcare, empowering the patient to drive the course of their own treatment; evidence shows that they can potentially have a transformative effect on healthcare monitoring and treatment efficiency.

 “The uses of them are many, but the primary uses in direct care are supporting shared decision making with the patient and tracking trajectory of illness,” explained Dr Sally Lewis, Ebbw Vale GP and National Clinical Lead for Value-based Healthcare at NHS Wales. “We’ve found that you can also use PROMs very easily to support remote monitoring of people with a chronic condition – a sort of virtual communication, rather than them having to necessarily always come out and have a face-to-face consultation with their clinician; that's helpful on all fronts, both from a patient experience point of view and also from a service sustainability point of view.”

For a clearer picture on the benefits that PROMs can bring to the table, Pharmafocus reached out to Dr Patricia Holch and Professor Jose Maria Valderas. Dr Holch is a Senior Lecturer in Psychology at Leeds School of Social Sciences, Leeds Beckett University, while Valderas is a Professor of Health Services and Policy Research at the NIHR PenCLAHRC and Institute for Health Services Research, University of Exeter Medical School. They explained that: “PROMs/PROs used in clinical practice have been shown in different studies to improve the accuracy of symptom reporting, save time in consultations, improve symptom/function monitoring, physician patient communication and decision making. In the US, integrated electronic PROM systems have enabled early detection of symptoms during chemotherapy, promoting a five-month survival advantage in metastatic oncology patients whilst significantly improving quality of life (QOL).”

Dr Lewis continued: “Once you move beyond direct care, we found that aggregated PROM data is very useful as a service planning tool, because it gives you very detailed needs assessments of that particular population of patients and how you might meet those needs, which of course is really important in the current context because old models of care are increasingly not fit for purpose for the changing needs of our population. Its operational uses are really important, and then and only then do you get the robust, bigger data sets, which we can start to use to generate real-world evidence for things like augmenting health technology appraisals and value-based procurements of medicines or medical devices, for example.”

However, while, on these bases, full application of PROMs seems like a no-brainer for patients and healthcare professionals, are their benefits really being fully utilised? To that, Dr Lewis responded with a simple: “No, I don't think so yet. I think the reason for that is that it hasn't been the way that we've worked; it's not embedded in normal medical practice, nor has it been.”

Dr Holch and Professor Valderas agreed: “It is clear that key stakeholders – patients, clinicians and service providers – need to be involved in the development of responsive PROMs systems to enable the smooth integration into clinical practice. In a recent BMJ piece about maximising the impact of PROMs, Calvert and colleagues describe the current ‘fragmented and suboptimal’ use of PROMs/PROs. Their recommendation for a national stakeholder steering group (with patients at the centre) would seem a pragmatic approach to achieving maximum benefit for all in utilising PROM data.”

In discussions with Dr Lewis, Dr Holch and Professor Valderas, all agreed that greater integration of PROMs into healthcare systems from the ground up is an absolute necessity in order to truly draw out their impactful benefits. An approach which treats PROMs as secondary or a plug-in type of solution and has seen inconsistent implementation has led to the “fragmented and suboptimal” performance which Calvert notes. But what method is best employed to take on the challenge of more deeply embedding PROMs into the healthcare system?

“There is consensus that health outcome evaluations that include PROs along with clinician-reported outcomes and administrative data are necessary to inform clinical and policy decisions,” Dr Holch and Professor Valderas noted. “At an individual level, PROMs have greater impact where an established and sustained PROM feedback system is in place, along with training of clinicians and stakeholders to utilise and apply the data. Indeed, published guidelines to support clinical integration recommend involving all stakeholders in the development and utilisation of PROMs. Further, PROMs introduced into the clinical flow should be considered a complex health care intervention; the Medical Research Council has provided a framework for development and implementation; researchers have a responsibility to ensure acceptance and replicability by utilising this guidance.

They continued: “At an aggregate level, in order to monitor QOL and outcomes, the NHS PROMs initiative has been collecting data since 2009 pre- and post-intervention for hip and knee replacement, groin and varicose vein surgery. However, this has had limited impact on hospital performance and provider resource priorities, partly due to inadequate feedback to key stakeholders. Disentangling the feedback processes of both aggregate and individual PROM data integration, Greenhalgh et al found that provider utilisation of PROM data is dependent on perceptions of data credibility and having the systems in place to understand and make use of these data.

“The integration of PROs as a key end point within individual patient care, healthcare organisation and programme performance evaluations, and population surveillance will be essential for evaluating whether increased healthcare expenditure is translating into better health.”

Keeping patients engaged

It is clear that the application of PROMs is not bearing fruit in the manner that has been expected and hoped for. As Dr Holch and Professor Valderas outline, two key parts on which the success of PROMs is dependant in pushing for greater operational efficiency and better treatment outcomes hinge on their integration into healthcare infrastructure, and the perception of stakeholders which feeds into the procurement of valuable, usable patient feedback. In a sense, it’s the old ‘garbage in-garbage out’ problem: from a patient perspective, they need to be engaged in order to provide high response rates full of practical data.

Dr Lewis touches on this issue of low response, drawing from her own experience working with patients: “Low response rates happen when patients don't see the point in filling in the form, which means they don't feel that it's meaningful to their care, and similarly their clinician doesn't feel that either. If you do, as the National PROMs programme in England used to do, a remote collection by a central body, you will get low response rates. If you make it a meaningful task between clinicians and patients and embed it in direct care, you'll get much higher response rates. If you don't get good response rates, then of course you're introducing some kind of selection bias, because we don't know what the characteristics are of the non-responders and that might be significant.

“Historically, people have tried to collect PROMs remote from care and not linked into direct care, so it has been seen as data collection to its own end, rather than useful communication information between clinicians and their clinical teams,” she continues. “And, of course, if you do any sort of remote data collection where data goes off into a black hole and the people who are creating that data don't actually get to see it or interact with it, then they don't have any vested interest in making that a meaningful endeavour. You have to make it part of direct care in order for people to want to interact with it, and that's the most important point.”

These comments from Dr Lewis again highlight the need for a new approach in the methods and systems by which PROMs are procured, and this includes ensuring patients are aware of the value of these measures. So, are patients being appropriately educated to fully appreciate this in order to ensure their engagement?

Dr Lewis thinks so: “I think that patients, where they  are properly involved from the start as to why this is important to their care, like this very much and will drive it themselves – that's my experience. If they're doing it with you, then they will absolutely appreciate it as being a very useful thing for them on the whole. But if you try to do it to them without their involvement, then nobody's invested in that.”

Dr Holch and Professor Valderas add: “Generally, PROMs are acceptable to patients and completion rates good, particularly if reminded via email and if patients know what is happening to their data. However, much more work needs to be done to ensure that patients understand why they are completing the PROM, how their data is being used, who is looking at it and how it will benefit them or others.”

A meeting of the minds

On 13 June, Leeds Beckett University’s Centre for Psychological Research played host to the Patient Reported Outcome Measures PROMS Annual Research Conference 2019, welcoming 160 delegates including patients, clinicians, researchers and academics from the UK, US, and Denmark. There, many of these aforementioned issues were discussed, particularly in relation to attaining deeper integration of PROMs into existing healthcare infrastructure, as well as the importance of patient engagement in driving response rates. Dr Holch, who served as the event’s organiser and host, celebrated the success of the occasion, remarking: “The themes of the 2019 UK PROMs conference were ‘Advances in patient reported outcomes: Integration and innovation’. Indeed, the majority of abstracts received were regarding PROM integration in clinical practice and a workshop entitled ‘Improving care with electronic PRO feedback to clinicians: Approaches, challenges & solutions’ was particularly popular with delegates. This indicates that the research community understand the need to prioritise clinical integration to fully support patient care and give traction to the patient voice.

Outlining some of the key takeaways from the conference, Dr Holch noted: “Electronic data capture of PROMs (ePROMS) is seen as the way forward to improve response rates, to avoid missing data and to facilitate the timely capture of data which clinicians can utilise to inform and improve patient care. Successful systems include Ambuflex in Denmark: a tele-Pro system for follow up of chronic disease. Here in the UK, responsive electronic PROM systems incorporating patient management systems are currently being evaluated.    

“Strong opinions were expressed both by patient advocates and researchers on patients completing PROMs for no clear reason and on PROM waste (where no-one is looking at or acting on these data). This was seen as an ethical issue as well as being burdensome for patients. In terms of steering the National PROMs Initiative in a direction where the PROM data is fully utilised, we strongly support involving patients in the discussions.”  

Healthcare has its work cut out

It’s clear that there’s a long road ahead with many hurdles still to navigate on the path to fully realising the benefits that PROMs can bring to healthcare systems, and there appears to be a distinct awareness of this throughout those focusing on the issue. But, as was shown at the 2019 UK PROMs Conference, professionals are also united in their approach to these challenges.

“Electronic capture of PROMs requires investment in the technology and the addressing of medico-legal issues around electronic capture of patient data,” comment Dr Holch and Professor Valderas. “Clinician and patient engagement are central to success and training programmes running alongside any PROM integration are essential. The moves towards holding reporting of PROM data to a high standard (SPIRIT PRO reporting guidelines) are pivotal to clinician acceptance and utilisation of PROM data.

“In addition, guidelines are necessary at an aggregate level to improve the robustness of accurate PROM data collection and dissemination to key stakeholders.  In terms of clinician acceptance of PROMs, it seems imperative that recognising the value of PROMS data and how to utilise it should be an essential part of health professional clinical training in order to maximise the impact and acceptability of PROMS in the NHS.”

Dr Lewis adds: “There are still technical problems: the degree to which organisations and systems want to invest in the technology to support this. There are information governance issues to overcome, particularly when you are working across a number of organisations, and their willingness or ability to share data across the organisation. It's a big cultural and change management piece of work to embed PROMs at scale in everyday healthcare – it's a huge task.

“The most important point is that this is about enhancing communication with patients, and if we get that right then we will get good data that we can do something with, whether that's looking at the effectiveness of medicines or whatever it happens to be; if it's approached as a data collection exercise only, it will fail.”

Matt Fellows

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