The Economist (Intelligence Unit) – Creating Healthy Partnerships (2019)

32

THE ROLE OF PATIENT VALUE AND PATIENT-CENTRED
CARE IN HEALTH SYSTEMS

Table 10: Use of patient-reported outcome measures (PROMs) in routine care

Indicator Sub-indicator Brazil China France GermanyItaly Japan Spain UK US

Use of PROMs Use of PROMs in routine care 0 0 0 0 0 0 0 1 0

Patient validation of PROMs 0 0 0 0 0 0 0 0 0

Use of PROMs in routine care: 0 = No/Not reported; 1 = Use of PROMs in routine care. Patient validation of PROMs: 0 = No/Not reported; 1 = Patient validation of PROMs.

42 NHS Digital, “Patient Reported Outcome

Measures (PROMs),” website accessed

October 19th 2018.

43 National Joint Registry, “NJR StatsOnline,”

website accessed October 19th 2018.

44 NHS England, National Patient Reported

Outcome Measures (PROMs) Programme

Consultation Report, 2017.

45 Birgit Prodinger and Paul Taylor, “Improving

quality of care through patient reported

outcome measures (PROMs),” BMC Health

Services Research, 2018.

46 Birgit Prodinger and Paul Taylor, “Improving

quality of care through patient reported

outcome measures (PROMs),” BMC Health

Services Research, 2018; Anja Desomer

et al, Use of patient-reported outcome

and experience measures in patient care

and policy, 2018; Joanne Greenhalgh et al.

“How do doctors refer to patient-reported

outcome measures (PROMS) in oncology

consultations?” Quality of Life Research,

2013.

47 Bianca Wiering et al, “Patient involvement

in the development of patient-reported

outcome measures: a scoping review,”

Health Expectations, 2017.

Of our scorecard countries, though, just the UK seemed to use PROMs in clinical settings and no

country in the scorecard undertook patient validation of those PROMs (see Table 10). Worse still, this

single positive result requires important caveats. The UK has scaled back the number of conditions

for which it collects PROMs to now cover only knee and hip replacements.^42 This may be precisely the

wrong intervention through which to make PROMs more common across the health service. Unlike

much care in the UK, private providers carry out a large share of joint replacements, with a share of

38% in 2017, although these are sometimes NHS funded.^43 Worse still, a 2017 survey found that only a

minority of clinicians who receive PROM data actually use it.^44

One problem with PROMs remains their relative novelty. Mr Balch of the National Patient Advocate

Foundation in the US observes that “there are still not a lot of truly meaningful patient reported

outcomes measures that reflect what we know about personalised medicine and those that are used

commonly now are not nuanced enough to capture preferences and experiences driven by key factors

such as type of disease, stage of disease, age, racial/ethnic values, and logistical burdens.” While useful

in research on system-wide performance, for example, doctors and nurses are often unsure how

best to use them in interactions with individual patients, or even what a “good” result might be in any

given case.^45

They also simply cannot be inserted into everyday care without other systemic changes. Clinicians who

would be disposed to use PROMs explain that they are reluctant to gather and apply the data involved

if it disrupts regular care. Further training, changes in workflow processes and payment for the time

involved would need adjustment.^46

Such practical matters can be overcome with effort, but PROMs as currently being devised also need,

perhaps ironically, to become more patient-centric if they are to achieve their potential. A 2017 study of

PROMs developed in the US, UK and Germany found that in only 11% did patients have any—typically

a limited—involvement in selecting which outcomes to measure, and in 26% no patient consultation

took place on any aspect of the questionnaire.

Indeed, in just over only half of cases did the creators check if their PROM tool was comprehensible

to patients.^47 This is consistent with Mr Graham’s experience: “It is not unusual to see them designed

without patient participation, but that means patients reporting on what clinicians think is important.”

New kinds of metrics: PREMs and PCOMs slowly appearing

Delays in fulfilment of the promise of PROMs suggest that the further evolution of healthcare

measurement, an essential part of patient-centred care development, will take a long time. One such