Memorandum by the Patient Involvement
in Patient Safety Team, University of York (PS 54)
PATIENT INVOLVEMENT IN PATIENT SAFETY
A review of strategies to promote patient involvement,
a study to explore patients' views and attitudes and a pilot study
to evaluate the acceptability of selected patient involvement
1. Early findings from a study which explored
how patients might be involved in promoting their own safety while
using healthcare services reveal that there is little evidence
for the effectiveness of such interventions, that patients have
been involved in their development or that consideration has been
given to their possible unintentional adverse consequences. While
patients feel that they could and should adopt safety behaviours
there are a number of factors which may affect their willingness
and ability to do so including patient and healthcare professional
characteristics as well as those of healthcare systems.
2. We are a group of researchers based at
the Department of Health Sciences at the University of York. Project
lead: Professor Ian Watt, Research Fellows: Dr Yvonne Birks, Jill
Hall, Dorothy McCaughan and Dr Maggie Peat. We are engaged in
a Department of Health funded project through the Patient Safety
Research Portfolio. This is a two and a half year project which
commenced in June 2006.
3. There is increasing interest in the development
and use of interventions to promote and support patients', and
their representatives' roles in securing their own safety in healthcare
contexts. In addition there is a recognition that patients and
their representatives are in a unique position to contribute to
both learning about healthcare safety and improvements to healthcare
systems by feeding information about safety issues that they have
identified or experienced in the course of their healthcare into
local and national safety reporting systems.
4. The overall aim of the project is to
investigate how patients, their family members and other representatives,
might appropriately be involved in their health care to effectively
promote their own safety and to explore how this may vary by context,
place or demography.
5. This aim has been achieved through three
main phases, each of which has built on the previous work.
Phase 1a focused set of literature reviews
summarising current knowledge on patient roles, interventions
and the potential for patients to contribute to reporting systems.
Phase 2primary research consisting of
individual interviews and focus groups with patients with a range
of clinical conditions with the objective of generating new knowledge
about patients' views on their role in and experience of safety
[Phase 3will involve the development
and piloting of a patient intervention informed by the findings
of the first two interventions and has not yet been completed.]
6. Systematic reviewgeneral overview
In general, the methodological quality of the
(14) included studies was poor. The evidence was limited to patient
involvement to ensure medication safety. There was no evidence
of patient consultation in the development of interventions. The
intended mechanism of effect and where it will impact on the causal
chain is unclear. There is a failure to consider potential unwanted
7. Systematic reviewmain findings
There is strong evidence for effectiveness of
patient self-management of oral anticoagulants. There is limited
evidence for effectiveness of other interventions to enhance medication
safety and findings should be interpreted with caution. We conclude
that strategies to promote patient involvement in order to enhance
safety are largely evidence free.
8. Systematic reviewrecommendations
Areas for research include any aspect of healthcare
safety other than medication; interventions requiring patients
to adopt an active role; studies which focus on the intended mechanism
of intervention and where it will impact. Further research should
be developed with public/patient involvement, may need to use
innovational approaches as well as good quality randomised controlled
trials and should carefully consider their choice of outcome measure.
9. Conceptual reviewgeneral overview
This was a large body of literature (search
strategy produced 13700 records). Out of 1933 papers ordered,
745 were included. Few were evaluated or included patients in
their development. Theoretical underpinnings were taken from patient
involvement in decision making but also "common sense"
responses to adverse events.
10. Categorisation of safety behaviours
From the literature there are a number of different
ways patients might be involved to promote their own and others'
safety and these are by:
a. Helping ensure the appropriate treatment
plan is formulated (eg: by sharing information about themselves,
their treatment and past history with healthcare professionals)
b. Helping ensure the treatment plan is correctly
implemented (eg: by checking that blood tests for monitoring
drug levels are carried out at the appropriate time)
c. Helping ensure that systems are safe (eg:
by acting as patient consultant on the design committee for
a new inpatient unit)
11. Level of involvement
There is a spectrum of involvement ranging from
patients being a recognised part of the safety system, for example
when verifying surgical site prior to marking for surgery, to
advice sheets which encourage patients to act to, for example,
make sure they are given antibiotics prior to surgery or that
they speak up if they are concerned about their care. The latter
may be problematic because patients do not know what the healthcare
professional's response might be.
12. Definition of patient safety/adverse
The patient definition of problematic experiences
(which may contribute to error) appears to be wider than the professional
definition of clear measurable events. This has potential consequences
for patient involvement in safety promotion generally and in reporting
13. Phase 2 patients' views on involvement
(from interviews and focus groups)
Patients want to/should be involved in keeping
themselves safe but a number of factors can affect their willingness
and ability to be involved including: patient characteristics
(eg: children, elderly, difficulties with language/literacy);
capacity to take on required role at the time (physical or psychological
wellbeing, conscious state); level of knowledge and experience;
anticipated or actual response of healthcare professionals; level
of "challenge" associated with role (less challenging,
easier; more challenging, difficult).
14. Barriers to and facilitators of involvement
Easier to question than to challenge, need personal
confidence, need to be sure of grounds "who am I to tell
them how to do what they've been trained to do?", desire
to avoid confrontation, fear of being labelled as a trouble maker
with consequences for care.
15. Barriers to and facilitators of involvement
(professional and system factors)
Easier to speak up for others, staff perceived
as approachable or dismissive, perceived "busyness"
of ward, immediacy/gravity of threat.
16. Causes of adverse events
Human fallibility, chain of events, lack of
openness and lessons not learnt.
17. Generally patients engaged with the
topic and showed a broad understanding of the issues.
These findings are based on the project work
to date. Analysis of the data is ongoing and further insights
should be available as this progresses.