Patient reported outcome measures could help transform healthcareBMJ 2013; 346 doi: https://doi.org/10.1136/bmj.f167 (Published 28 January 2013) Cite this as: BMJ 2013;346:f167
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Nick Black points out that PROMs were initially developed for use in research, and only subsequently adopted to support clinical management of individual patients . Having been an advocate of the use of PROMS in my speciality - Child and Adolescent Mental Health Services (CAMHS) - for the last decade [2, 3], I have become increasingly concerned that unless the tension between these two aims; to collect data to inform generalizable findings for audit or research on the one hand, versus the desire to collect data to inform individual care on the other, is addressed, widespread mandatory implementation of PROMS may end up harming rather than helping individual patient care.
The NHS is in the process of a major experiment in terms of rolling out a new form of monitoring – use of PROMs – but we are doing so currently without having trained people in their use with individual patients. This is being undertaken without clinicians knowing the answers to key questions such as how best to safely interpret and report the data: how often to use in clinical practice; and when not to use .
Whilst I and others believe there may indeed be a role for PROMs in clinical practice to help enhance collaborative working , this needs careful support and training , and a recognition upfront that we are in the early stage of our knowledge about appropriate clinical use. It is not helped by Trust imposition of measures without adequate clinician and patient input as to their utility , in the context of lack of appropriate IT infrastructure  nor by the inappropriate use of PROMs data as stand-alone measures of performance .
Unless we develop the evidence base as to how to use PROMs to support direct clinical work in order to find appropriate ways to integrate these tools with clinical shared decision making they may well continue to be experienced as just one more bureaucratic burden, imposed autocratically from above, and may end up doing more harm than good.
Competing interests: I am a founding member and paid director 1 day a week of the CAMHS Outcomes Research Consortium (CORC) a not for profit learning collaboration committed to using PROMS to inform service development and have developed with colleagues a training package in the clinical use of PROMS – Using Patient Reported Outcome Measures to Improve Service Effectiveness (UPROMISE)
Re: Reference BMJ 2013;346:F167
Many of us in primary care wonder how we have got ourselves into such a nonsensical “Emperor’s Clothes” mess of measuring everything that can be measured and when this does not appear to be shifting outcome measures in the right direction, thinking up some more measurements that we could institute. Stafford NHS Trust is a good example of how the culture of an organisation can get sidetracked by measures that are instituted and take their eye off things that are less measurable and less easily defined. Heisenberg’s uncertainty principle defines the process of measurement by its nature altering the process. If measuring more means better outcomes we should have already seen significant progress. I see no evidence of this but feel, on a daily basis, the tottering NHS weighed down by more protocols, red tape, targets and digital philosophy.
Professor Black’ article demonstrates the dangers in applying appropriate academic research tools to other areas, such as the coal face (I work in primary care). Where is the reference of evidence to show this even may be generalizable? What is the actual purpose, different to screen threshold for surgery compared with how it impacts on an individual’s life. Individuals are not clones. They soon learn what score achieves the outcome desired, as do clinicians. It is not surprising our target led culture is sinking under Government initiatives, nor that gaming is being subconsciously encouraged. It appears from the article that there may be a risk of paying for advice and then get drawn in to acting on it. PROMs and PREMs will tip the already burdening system and make us listen and care even less for what matters, all due to another JGI (jolly good idea) from a WIT (white ivory tower).
Dr Alex Fitzgerald-Barron
Competing interests: I am a GP, so further scoring tasks have potential direct impact on our doctor-patient therapeutic relationship
I would agree with some other correspondents that using PROMS in a "tick box way" to feed a management led IT beast is a dreadful scenario. However, how have we got into this situation where PROMS might be needed in the first place?
I can only comment from the viewpoint of my specialty and do not speak for others. In psychiatry, outome measures that are interviewer led can be helpful, but can lead to significant bias (misinterpretation, patients not feeling able to be honest because of a perceived power difference between doctor and patient) and self-rated questionnaires are only as good as their design and the questions they ask, so patients not infrequently feed back to me that they don't ask the right questions or give options to give more usefule information.
These are real-life clinical concerns in assessing how somebody is getting on with treatment and if it is making a difference, not "Ivory Tower" stuff or necessarily a research agenda.
I think on the other hand that developing PROMS and other measures for their own sake is counter-productive and instead would like to see that we agree to use fewer and better measures and these come closer to catching patient views and experiences.
Competing interests: No competing interests
I write as an oncology patient.
I am weary of checklists and computers.
They serve neither the patient or the health professional. Instead
they stoke the fires of bureaucracy.
PROMS (1) have all the hallmarks of a new fuel.
1. Patient Reported Outcome Measures May Transform Healthcare. BMJ. 23 February 2013. Vol 346: 19-21
Competing interests: No competing interests
In his thorough analysis about the potential contribution to transform healthcare of the routine use of patient reported outcome measures (PROMs), Black does not acknowledge that PROMs can be similar to traditional, clinician-rated measures unless they really incorporate, during their development process, the patient’s perspective and not merely the researchers’, clinicians’ and administrators’ perspectives.[2, 3]
The term ‘patient-reported’ only implies that the instrument is filled out by the patient. It should not be automatically inferred that the information so obtained actually reflects patient concerns and priorities.[2, 4] Therefore, whether a PROM is patient-generated, patient-centred, patient-valued or patient-irrelevant is not an idle or futile question.
It is very likely that the transformative potential attributable to the routine use of PROMs will largely depend on whether these PROMs genuinely incorporate and measure the patient’s perspective. Fortunately, an increasing number of both patient-generated and patient-centred PROMS have been developed in recent years [2, 3] and some studies have already begun to explore patients’ views on the relevance of some of the commonly used PROMS (most of which were mainly developed without direct patient participation).[5-7]
 Black N. Patient reported outcome measures could help transform healthcare. BMJ 2013;346:f167.
 Trujols J, Portella MJ, Iraurgi I, Campins MJ, Siñol N, Pérez de los Cobos J. Patient-reported outcome measures: Are they patient-generated, patient-centred or patient-valued? J Ment Health 2013; doi:10.3109/09638237.2012.734653.
 Rose D, Evans J, Sweeney A, Wykes T. A model for developing outcome measures from the perspectives of mental health service users. Int Rev Psychiatry 2011;23:41-6.
 Doward LC, McKenna SP. Defining patient-reported outcomes. Value Health 2004;7(suppl 1):4-8.
 Paterson C. Seeking the patient's perspective: a qualitative assessment of EuroQol, COOP-WONCA charts and MYMOP. Qual Life Res 2004;13:871-81.
 Crawford MJ, Robotham D, Thana L, Patterson S, Weaver T, Barber R, et al. Selecting outcome measures in mental health: the views of service users. J Ment Health 2011;20:336-46.
 Apfelbacher C, Weiß M, Saur J, Smith H, Loerbroks A. Patients' views on asthma-specific quality of life questionnaires: qualitative interview study in Germany. J Asthma 2012;49:875-83.
Competing interests: No competing interests