THE ROLE OF PATIENT VALUE AND PATIENT-CENTRED
CARE IN HEALTH SYSTEMSmetric is the Patient Reported Experience Measure (PREM), which goes beyond outcomes to examine
the healthcare user’s satisfaction with and general experience of care. Like PROMs, individual examples
are appearing: under French law, for example, all hospitals must take part in the e-Satis survey system,
which asks patients how satisfied they are with their experience, and results are made public. The
NHSs in each of UK’s constituent nations all conduct large satisfaction surveys that cover various
aspects of primary and specialist care. Overall, however, use of PREMs remains limited.^48 Moreover,
where they exist, the data tend to be used at a system level rather than filtering down to clinicians.^49
Other metrics of potential value for patient-centred care are also appearing. Recently, efforts to create
so-called Patient-Centred Outcomes Measures, which cover results solely defined by patients and
may go beyond the clinical, have begun.^50 Dr McClellan illustrates what kind of information this could
include: “If you have cancer, then if what matters is whether you are making it to big family events, is
that actually happening? Are you able to live in the community if you want to? We are starting to see
that but there is a long way to go.” Looking ahead, he believes healthcare may even adopt metrics
from other sectors such as net promoter scores, which measure the willingness of product or service
users to recommend them to others. This has already begun in the English NHS, which since 2013 has
collected substantial data on whether patients would recommend a variety of services to their families
or friends.
For now in general, however, health systems still have to learn how to walk before they can run. The
adoption of PROMs and other metrics needs to move from aspiration to clinical reality. These metrics
can also play a key role in drug development (see Box).
48 Anja Desomer et al, Use of patient-reported
outcome and experience measures in
patient care and policy, 2018.
49 Ronen Rozenblum et al, “The patient
satisfaction chasm: the gap between
hospital management and frontline
clinicians,” BMJ Quality Safety, 2013.
50 International Rare Diseases Research
Consortium, Patient-Centered Outcome
Measures Initiatives in the Field of Rare
Diseases. 2016; R Bryant-Waugh, “What
matters to me?: Development and use
of a person centred outcome measure
(PCOM) for parents of children with
feeding disorders,” Poster presentation,
BMJ Archives of Childhood Disease, 2017.The focus of PROMs and PREMs are most
relevant to healthcare providers and payers,
not to mention patients. Other parts of the
health system are also trying to access patient
views, in particular those approving drugs and
setting their prices.Numerous regulatory and health technology
agencies have patient representatives with
formalised roles in the approval process,
although not necessarily in the decision-making itself. Axel Mühlbacher, professor of
health economics and healthcare management
at the Institut Gesundheitsökonomie und
Medizinmanagement (Health Economics
and Healthcare Management Institute) in
Germany, points out, however, that just
“having some patients sitting around the
table is window dressing.” In his country, for
example, patient advocates are present but
not able to vote, and they are not themselves
necessarily transparent about how they arrive