Please can you give a brief introduction to patient participation in care (PPC)?
Patient-centred care, that is partnering ‘with’ patients, rather than providing services ‘to’ them, is advocated as a way to improve patient safety.
Patient Participation in Care (PPC) involves participation in decision making as well as other aspects of care, including patients monitoring their progress and effects of care and providing suggestions for improving care.
Patient input can inform health care professionals about problems with treatment and lapses in care
What benefits can PPC have?
When patients participate in their care they function better, experience fewer symptoms, their chronic conditions are better controlled, and are half as likely to experience an adverse event.
Further, the more patients participate in their care, the more positive they rate hospital quality of care. The role of patients in promoting safe care has been affirmed both nationally and internationally, notably in the landmark report Crossing the Quality Chasm.
How much research has currently been done into patient and nurse willingness to participate in PPC?
In 2011, international experts underlined the lack of studies of both patients’ and health care workers’ views of patient participation, although some international evidence is emerging.
That is, we know very little about both patients’ preferences for their participation in the safety of their care and health practitioners’ willingness and skills in engaging participation. There is also little evidence of the strategies and processes that can be implemented to promote patient participation.
Without this evidence, patient safety approaches and programs are at risk of being misdirected and achieving suboptimal quality improvement and patient safety outcomes.
Responses to a US patient safety survey identified that the vast majority of patients did not think patient safety was their responsibility as they preferred to trust health care providers to provide their care.
A small UK study showed that patient participation may be conditional on the situation in that patients were more prepared to speak up if they were missing an identification bracelet as compared to asking doctors and nurses to wash their hands.
Canadian researchers describe how patients as partners challenges the dominant and more traditional discourse of the roles of health care practitioner and patient, which is why some may see this as threatening.
Griffith’s National Centre for Excellence in Nursing (NCREN) and Deakin University have recently received an Australian Research Council (ARC) Discovery grant to research into PPC. Please can you explain how this grant is going to be used?
We will undertake a three phased study. In the first phase, patients and nurses will be interviewed about their perceptions of Patient Participation in Patient Safety Activities (PPPSA). We will ask them what they think are barriers and drivers for this participation. We will probe them to identify potential strategies to enhance participation.
Professor Tracey Bucknall will undertake this Melbourne and a PhD student, Georgia Tobiano and I will undertake it on the Gold Coast. In the second phase, led by Dr Jenny Whitty, a health economist, we will develop scenarios for a discrete choice experiment, which will be administered as a survey to patients and nurses. This phase will help us determine their preferences for participation.
In the final phase, we will synthesise the findings from the first two phases and recent literature to develop a framework for patient participation in patient safety activities in acute health services
What are the aims of this research?
Overall, this study seeks to examine and discover patients’ and nurses’ perceptions of PPPSA and investigate their preferences as a basis for developing a framework to optimise PPPSA in acute health services. Specifically, this study will:
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Identify patients’ and nurses’ perceptions of barriers and facilitators of PPPSA;
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Determine patients’ preferences and nurses’ preferences for participation in their care, and factors that impact on their preferences;
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Develop a framework, including implementation strategies, for PPPSA in acute health services.
How do you think the results of this research will influence the uptake of PPC in the future?
We hope that by providing a framework for PPPSA and implementation strategies, will make it easier for hospitals to adapt or adopt a patient centred approach to care.
We recognise that our research will generate some evidence on what may work, but that getting research into practice is not easy.
We anticipate that further knowledge translation research may be required to better understand how our research finding may be used in the clinical context.
How do you think the uptake of PPC in Australia will differ from in other countries?
Many of our hospitals and professional organisations are committed to a patient centred approach to care, but this does not necessarily mean that we are actively encouraging patients to participate in their care.
It is difficult to know how uptake of patient participation in care will differ in Australia as compared to other countries until we undertake our Australian research and understand nurses’ and patients’ perspectives on this issue. Then, we will be able to compare it to other countries.
Please can you tell us about some of the international programs that have been developed to advocate for patients having an active role in their care?
Several international programs have been developed to advocate for patients having an active role in their care, especially associated with patient safety issues. For example, the UK developed a program, “What can you do to make health care safer” and the US Joint Commission on Accreditation in Healthcare Organizations (JCAHO) has a campaign for patients to speak up to prevent healthcare errors.
Unfortunately, Australian research on patients who experienced an adverse event showed that clinicians were not open to patients’ questioning. That is, if some clinicians are not even willing to field patients’ inquiries, it is unlikely that they will be prepared for patients to become more active participants in their own care.
We need to better understand patients’ perceptions of their role and how this is tied to patient safety. We also need to understand more about health professionals’ willingness and ability for this to occur.
There are compelling reasons to study nurses’ perceptions. Nurses are the largest health professional group in hospitals, are with the patient 24/7, co-ordinate most quality improvement activities in hospitals and, as a result have the potential to play a leading role in promoting PPPSA.
Where can readers find more information?
Three references that contain more information on PPPSA are:
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World Health Organisation, Patients for Patient Safety. 2007, World Health Organization: Geneva.
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Australian Commission on Safety and Quality in Health Care, Patient-centred care: Improving quality and safety through partnerships with patients and consumers, Australian Commission on Safety and Quality in Health Care, Editor. 2011: Sydney.
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Patients as partners: maximizing the effectiveness of your safety program with patient participation. Joint Commission Perspectives on Patient Safety, 2003. 3(5): p. 1.
About Professor Wendy Chaboyer
Professor Wendy Chaboyer is the Director of the Australian National Health and Medical Research Council (NHMRC) Research Centre of Excellence in Nursing Interventions for Hospitalised Patients; the first NHMRC funded nursing centre in Australia.
She was also the foundational Director of the Research Centre for Clinical and Community Practice Innovation, which grew significantly in funding, grant successes, membership numbers and discipline representation during her tenure.
She sat on the Australian Commission on Safety and Quality in Health Care’s Expert Advisory Committee on Clinical Handover and is currently on their Expert Technical Advisory Panel for developing national safety goals in health.
Wendy has been very active in the Australian College of Critical Care Nurses (ACCCN), having sat on the National and State Boards of Directors for several terms. She has been the Chair of Research Advisory and the Quality Advisory Panels.
Her research interests focus on acute and critical care nursing practices, with work on ICU discharge practices, clinical handover, Transforming Care at the Bedside and on compromised skin integrity such as surgical wounds and pressure injuries.
Wendy has over 140 peer reviewed publications, 8 book chapters and one edited text in its second edition.
Patient-derived organoids: Transforming cancer research and personalized medicine