Exploring patient participation in reducing health-care-related safety risks
Exploring patient participation in reducing health-care-related safety risks
Exploring patient participation in reducing health-care-related safety risks
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<strong>Explor<strong>in</strong>g</strong> <strong>patient</strong> <strong>participation</strong> <strong>in</strong> reduc<strong>in</strong>g <strong>health</strong>-<strong>care</strong>-<strong>related</strong> <strong>safety</strong> <strong>risks</strong><br />
62<br />
level of understand<strong>in</strong>g of the <strong>in</strong>formation provided, although the value of written<br />
documents was confirmed.<br />
Experts identified several barriers to <strong>patient</strong> understand<strong>in</strong>g, <strong>in</strong>clud<strong>in</strong>g language (experts<br />
1 and 9). This problem has begun to be addressed <strong>in</strong> Bichat University Hospital by<br />
translat<strong>in</strong>g the <strong>in</strong>formation sheet <strong>in</strong>to six different languages. The issue of vocabulary <strong>in</strong><br />
the <strong>in</strong>formation sheets was also cited by Expert 14. Patient <strong>in</strong>formation files have been<br />
suggested, 21 but these are not synchronized between hospitals are often created <strong>in</strong> medical<br />
academic sett<strong>in</strong>gs or directly by the haemovigilance unit or hospital adm<strong>in</strong>istration staff.<br />
Experts 11 and 15 described the format of <strong>in</strong>formation tools given to <strong>patient</strong>s as be<strong>in</strong>g<br />
similar to medico-legal documents, which are legally competent but not specifically<br />
designed to communicate with <strong>patient</strong>s. Expert 6 stated that <strong>in</strong> his university hospital,<br />
a decision was made to create an <strong>in</strong>formation file focused more on security than on risk,<br />
with the objective of “humaniz<strong>in</strong>g” the <strong>in</strong>formation.<br />
Medical <strong>in</strong>formation needs to be adapted to the <strong>patient</strong>’s profile and given at the right<br />
moment to enable <strong>patient</strong> autonomy (25). The way <strong>risks</strong> are presented by doctors<br />
can affect the decisions <strong>patient</strong>s make (24). Thieblemont et al. underl<strong>in</strong>e the need for<br />
doctors to be aware of the issues <strong>in</strong>dividuals refer to when evaluat<strong>in</strong>g <strong>risks</strong> and adapt the<br />
<strong>in</strong>formation accord<strong>in</strong>gly. Several experts po<strong>in</strong>ted out the fact that <strong>in</strong>formation on blood<br />
transfusion given at the same time as the diagnosis is often not remembered by the <strong>patient</strong>.<br />
It is necessary to balance the <strong>in</strong>formation given to <strong>patient</strong>s so it is understandable and<br />
adequately quantified, without creat<strong>in</strong>g stress or overload for them (experts 1, 3 and 6).<br />
As recalled by Noirez (25) and by several experts (3, 15, 6 and 11), <strong>patient</strong>s sometimes<br />
prefer to rely on doctors to make f<strong>in</strong>al decisions and do not want to be <strong>in</strong>formed. This<br />
choice should be respected, <strong>in</strong> the light of the core duty of doctors to protect their<br />
<strong>patient</strong>s. Accord<strong>in</strong>g to Expert 3: “There needs to be a balance between giv<strong>in</strong>g <strong>patient</strong>s<br />
the opportunity to get <strong>in</strong>volved <strong>in</strong> their <strong>care</strong> and lett<strong>in</strong>g them rely on doctors if they<br />
want to”.<br />
Availability of <strong>in</strong>formation to <strong>patient</strong>s<br />
The expert <strong>in</strong>terviews highlighted the rates of <strong>in</strong>formation-giv<strong>in</strong>g on blood transfusion.<br />
Provision of pre-transfusion <strong>in</strong>formation appeared to vary from 0% to 94% <strong>in</strong> the<br />
examples provided.<br />
An unpublished study carried out <strong>in</strong> Nantes University Hospital on <strong>health</strong> <strong>care</strong><br />
professional knowledge showed that 94% of prescribers <strong>in</strong>formed the <strong>patient</strong> every time<br />
a transfusion was carried out, but only 40% checked that written <strong>in</strong>formation had been<br />
given (Expert 6).<br />
A study conducted <strong>in</strong> 2003 disclosed that 14 recipients out of 29 did not know they were<br />
be<strong>in</strong>g transfused, and 9 responded that they had been given an <strong>in</strong>formation card (18).<br />
Only 31% confirmed that they had received the pre-transfusion <strong>in</strong>formation document.<br />
21 Circulaire DGS/SQ 4 n° 98-231 du 9 Avril 1998.