Patients for patient safety
Measuring the impact of patient engagement on health-care safety
Patient engagement in health care has gained momentum over recent years, driven primarily from the logical argument that the delivery of any service must take into account the user’s needs and perceptions. The method of engagement and influence of this on outcomes has been investigated, albeit sporadically. It has shown to be effective in areas of patient care such as decision-making and the management of chronic diseases. Patient participation is thought to have the potential to prevent medical errors, although the evidence base is less robust1.
Limited attempts have been made to assess the impact of consumer involvement on service quality. These gains are often hard to identify. The personal gains for the consumers involved in these processes are more pronounced, by increased knowledge and the feeling of being listened to by health-care professionals2.
Measuring the impact of Patients for Patient Safety
Since its launch in 2004, WHO Patient Safety's patient engagement initiative, Patients for Patient Safety (PFPS) has worked to strengthen the voice of patients as advocates for safer health care, primarily through the network of patient champions around the world. Last year, PFPS carried out an evaluation to assess, for the first time, the impact and effectiveness of the project. Although examples of the activity, influence and impact of many individual champions was known, this had never been recorded and analysed in a systematic and objective way.
The evaluation involved primarily gathering qualitative data, through online surveys and interviews with staff, steering group members, individual patient Champions and collaborative organizations. These sources included the views of patients, policy-makers and health-care organizations, while recognizing the representation of these groups was neither comprehensive nor exhaustive. The online survey of champions aimed to identify the activities of the Patient Safety Champions and the subjective impact on patient safety in their countries and communities, as well as the extent to which support requirements of PFPS Champions were being met by the secretariat.
The study found patient champions to be involved in regional and national health quality boards, hospital boards, local patient safety groups, health ministries and WHO expert committees. A large number frequently present to or teach health-care workers, students, patients, hospital management and national groups. Champions have also produced a range of patient safety materials including patient safety guidelines, posters for conferences, collections of patient experiences and peer-reviewed journal articles.
By educating undergraduate and postgraduate students and teaching other health-care workers and patient groups, they have a powerful voice in promoting patient advocacy and the messages of patient safety. By sharing experiences, strengths and limitations, each individual and organization can learn and improve. This is highlighted in the comments from Champions regarding the importance of aligning their voice with those of health-care workers and leaders.
The number of presentations given by an individual Champion may be as high as 100. When multiplied across the network, PFPS is reaching hundreds of thousands of individuals. In order to bring about a cultural change, this widespread dissemination of knowledge and awareness is paramount.
The report from the impact analysis produced a number of recommendations, which will inform the forthcoming strategic review of PFPS. The recommendations included considering how to translate increased awareness into evidence-based interventions to reduce patient harm through advocacy and widening community engagement. The report recommended the development of generic materials to support advocacy efforts and to involve the network in the production of relevant and appropriate patient tools, to encourage patient engagement, education and the promotion of patient safety within the global community. PFPS also needs to work to widen participation, create closer links with the regions and other patient safety programmes and to ensure more equal representation within the organizational leadership.
The challenges of measuring culture and future analysis
There is a need for much further evaluation into the impact of consumer involvement in patient safety initiatives around the world. Patient safety depends on a variety of factors, and awareness, advocacy and numerous initiatives have resulted in the promotion of a culture of safety, albeit gradually.
A number of tools have been developed to measure safety culture, with a recent study identifying 13 instruments that do exist3. However, these focus primarily on the change within a given organization. Global analysis and evaluation across organizations, institutions and countries is necessarily more complex.
Finding a measure that can adequately demonstrate that patient care is safer because of patient engagement and involvement is clearly difficult. More objective measures, such as the number of hospitals where patients are engaged in patient safety planning, boards etc. before and after Champion involvement, is crude and requires baseline assessment to determine whether any change has been achieved.
For PFPS, further evaluation is required, and activity will need to be recorded on a more regular and systematic basis. This impact analysis was an important first step, describing the subjective impact and effect of the PFPS network, as perceived by the Champions themselves and WHO Patient Safety, but further evaluation will be critical. This study has been unable to assess the effect of PFPS as perceived by influential organizations and institutions, hospitals and policy-makers, as standardised knowledge of which organizations engaged with Champions was not available. This would be a valuable future task.
The PFPS impact analysis was carried out by Dr Nabihah Sachedina, Clinical Advisor to WHO Patient Safety in 2010.
1 Longtin Y, Sax H, Leape LL, Sheridan SE, Donaldson L, Pittet D (2010) Patient participation: current knowledge and applicability to patient safety. Mayo Clin Proc 85:53-62
2 Fudge N, Wolfe CDA, McKevitt C (2007) Assessing the promise of user involvement in health service development: ethnographic sudy. BMJ. Online: doi: 10.1136/bmj.39456.552257.BE
3 Scott T, Mannion R, Davies H, Marshall M (2003) The quantitative measurement of organizational culture in health care: a review of the available instruments. Health Services Research 38:3; 923-945