Select Committee on Health Written Evidence

Memorandum by the Patient Involvement in Patient Safety Team, University of York (PS 54)


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 strategies.


Executive summary

  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.

Project team

  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.

Project outline

  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 1—a focused set of literature reviews summarising current knowledge on patient roles, interventions and the potential for patients to contribute to reporting systems.

  Phase 2—primary 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 in healthcare.

  [Phase 3—will 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 review—general 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 effects.

7.   Systematic review—main 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 review—recommendations

  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 review—general 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 event

  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 adverse events.

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 (personal factors)

  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.

September 2008

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