24
THE ROLE OF PATIENT VALUE AND PATIENT-CENTRED
CARE IN HEALTH SYSTEMS
those two sets of information together to
determine the right care plan for that patient at
the current time is where co-creation happens.
You can have a back and forth.”For such discussions to be meaningful, notes
James Morrow, a general practitioner (GP) in
England’s NHS, it often requires more than new
types of conversations between patient and
clinician. Broad systemic change may also be
necessary so that “patients are able to express
themselves in a way that they are respected:
making patients wait a long time in a waiting
room is disempowering; making them take
snap decisions is disempowering; making
them take decisions while lying on their backs
can be disempowering. Respecting their time,
dignity and right to go away and think should
be viewed as part of good care.”Shared decision-making also has important
limitations. To begin with, whoever makes the
decision may still have a very limited number
of choices: medicine may provide patients with
certain conditions only one viable option, or
even none.Next, to understand potential available
therapies fully, patients may need extensive
assistance. As Isabella Erb-Herrmann
—Bevollmächtigte des Vorstandes
(representative of the management board) at
German insurer AOK Hessen—explains, “if we
are talking about patients coming to make and
discuss proposals, they need to be informed to
a high-quality level of health literacy.”Accordingly, AOK Hessen offers substantial
information resources for patients. Here,
though, the scorecard indicates the need
for further progress across study countries,with patient decision aids widely available in
just four study countries (Germany, Spain,
the UK and the US) and seeing substantial
development in one (France).Finally, shared decision-making should not
become as much a barrier to patient autonomy
as its absence. Yukiko Nishimura, president and
founder of the Advocacy Service for Rare and
Intractable Diseases’ multi-Stakeholders in
Japan, explains that some patients genuinely
feel more comfortable with doctor-directed
care, with attitudes frequently differing by
age, disease or even family environment. Dr
Morrow agrees that, whether patients want
extensive facts before picking an option,
“varies by individual and by condition. It is a
valid choice to make a conscious decision to go
with what a clinician thinks best. Forcing those
patients into a multiple choice about what they
want fails to respect their desire for an adviser.”Although we did not address this topic
directly in our survey, it is perhaps relevant
here that, with respect to shared decision-
making, respondents were more likely to put
an emphasis on the importance of having
accurate information on side-effects, and on
family members and carers being able to take
part in discussions, than on the existence of
a list of options from which a patient could
choose.But does shared decision-making work?
It is a matter of what is being measured. A
2015 review found very few relevant studies
available. Although only 4% of these showed
any negative results from shared decision-
making, too little evidence existed to claim
with certainty that it led to better clinical