PATIENTS NEED INFORMATION
Patients in partnerships in healthcare need access to good quality,
understandable information – whether in the one-to-one relationship of
a consultation, or when considering whether they should join a trial,
or as members of research teams. Without this, there is little prospect
meaningful dialogue and real patient involvement.
Patients regularly complain about lack of information. Although some
prefer not to have detailed information about their illness and
treatment options and to leave things entirely to their professional
advisers, many are keen to learn more. They want to know and understand
how the results of treatment tests have a bearing on them personally.
For them, openness and transparency are essential. They need the
assurance that everyone knows what tests of treatments are going on;
that results are published, whether ‘positive’ or ‘negative’; that
systematic reviews of all the relevant evidence are undertaken and kept
up to date; and that adverse effects are not covered up. Clearly,
patients need to be sure that researchers know what has already been
done before embarking on new research: as we have outlined in earlier
chapters, patients have suffered when researchers have not bothered to
find out what has gone before.