Authors
- Phillips, Nicole M PhD, MNS, GDipAdvNur(Ed), DipAppSc(Nurs), BN, RN
- Street, Maryann PhD, BSc(Hons), GradDipDrugEval&PharmSci
- Haesler, Emily BN, PgradDipAdvNur
Abstract
Review question/objective: The primary objective of this review is to generate a list of evidence-based determinants used for assessing patient participation. The review will synthesize the best available evidence for assessing patient participation in health care. Patient participation is the active involvement of the patient in planning, delivery, monitoring and evaluation of their own care. A patient is an individual receiving care services from an organization providing health care. In the context of this review, patient participation will include the active involvement of non-professional carers/caregivers (e.g. family members and significant others) who support the patient, particularly adults who are unable to advocate on their own behalf (e.g. those with cognitive impairment).
The review questions are:
What are the available instruments that can be used to measure patient participation in healthcare?
What criteria do available instruments incorporate?
Are the identified instruments used to measure patient participation in healthcare reliable and valid?
What is the feasibility of the identified instruments to measure patient participation in healthcare?
What other available strategies can be used to assess patient participation in healthcare?
What are the components of other available strategies?
Are other identified strategies feasible to assess patient participation in healthcare?
Background: Promoting patient participation is recognized as a component of high quality health care, and there is evidence that a patient-centered focus can result in significant benefits in terms of care quality and experience of care. Outcomes relating to quality of care include a reduction in mortality,1 readmission rates,2 length of stay and infection,3 as well as improved adherence to treatment regimens,4 and improved functional status.5 Involvement of the patient in quality improvement initiatives can lead to improved quality of care,6-8 as well as better patient outcomes.9-11 Hospitals that provide patient-centered care have financial benefits including reduced length of stay, lower inpatient costs, decreased adverse events, higher employee retention rates, reduced operating costs and decreased malpractice claims.12
Measurement of patient participation in health care is a relatively new concept, introduced in western Europe, North America and Australia over the previous 25 years.13 The World Health Organization World Alliance for Patient Safety is actively focused on the role that patients and their families could play in the improvement of health care.14 Evidence is emerging that patient participation can enhance decision making processes, reduce medical errors, optimize self-management for patients with chronic illness and improve patient adherence to health care practices.15 As such, health services internationally now include consumer-centered care and partnering with consumers as an aspect of service delivery and design. In 1998, Cahill observed that a standardized definition of patient participation and reliable, valid measures for assessing the extent to which this concept is executed in practice are needed.16 Over a decade later, the concept of patient participation remains poorly defined. Various terms, including patient involvement, partnership, empowerment, collaboration and patient-centered care are used interchangeably.15 Despite the now common practice of gathering feedback from patients, its use to stimulate quality improvement remains poorly characterized.
In an overview of measurement of patient participation in health care, Coulter, Fitzpatrick et al., highlighted the first stage of the measurement process as being the development of agreed standards, each with a set of measureable indicators focused on patient-centered care and patient priorities.17
Development of measurable indicators has been a focus of health service quality improvement internationally. In 2006, the Organization for Economic Co-operation and Development (OECD) prepared an overview of health care quality indicators in 23 countries represented in the OECD; laying the foundation for international benchmark indicators that embrace and build upon health service quality frameworks already implemented in six major OECD countries (Australia, Canada, Denmark, the Netherlands, the United Kingdom and the United States).18
Within Australia, 10 National Safety and Quality Health Service (NSQHS) standards have been designed to protect the public from harm and to improve the quality of health service provision.19 These standards are integral to the Australian health care accreditation process, as they determine the criteria on which an organization's performance will be assessed, and indicators against which performance will be measured. Similarly, other OECD countries document standards and quality indicators that are comparable to those used in the Australian setting.18
The second Australian NSQHS standard, 'Partnering with Consumers', describes the systems and strategies to create a consumer-centered health system through inclusion of consumers in the development and design of quality health care.19 This requires active involvement of consumers in the review, design and implementation of health services with a goal of improved safety, quality and efficiency. Thus, the first stage of the process defined by Coulter, Fitzpatrick et al., in which agreed standards are defined, is prescribed within the NSQHS Standards.17 Equally, health care quality indicators in other OECD countries prescribe to the principle of consumer involvement, variously referred to as patient centeredness, patient focus or responsiveness.18
The development of measureable indicators of patient participation is ongoing both in Australia and internationally. The Australian Institute of Health and Welfare (AIHW) includes 'patient experience' as a national quality indicator to be reported by health care facilities that encompasses patient satisfaction, involvement in and support for health care, but specific ways in which this should be measured and reported remain undefined.20 The OECD is also yet to finalize its work on measurable quality indicators of patient participation.18
Reliable strategies to measure and evaluate the achievement of quality indicators of patient participation have therefore received minimal attention within the NSQHS Standards structure; although work identifying the most appropriate measurement strategies is ongoing. As part of the OECD project on quality indicators in health care, the Norwegian Knowledge Center for Health Services reviewed surveys that have been used to measure patient experience in international health care settings. The reviewers identified numerous large scale patient surveys that have been undertaken in OECD and non-OECD countries to measure patient experiences, and identified both qualitative and quantitative strategies that could be adopted by health care facilities, including some surveys that were under development at the time of the review.18 Elwyn, Edwards et al., reviewed instruments for measuring patient involvement in shared decision making and found existing instruments had not been specifically developed to measure patient involvement, were developed for different purposes and were not validated.21 In their comprehensive report on measuring patient experience with health care services, Coulter, Fitzpatrick et al., outlined a range of measurement strategies including surveys, interviews, focus groups, patient diaries, 'mystery shopping' and journey mapping.17 However, the authors did not report the implementation, validation or effectiveness of these tools.
Health care services currently use a range of strategies to evaluate patient-centered care and partnerships with patients and their significant others. The two primary approaches to measuring patient participation are external observation methods and self-report instruments. Examples of tools using external observation for measuring patient involvement in shared decision making are the Option Scale,22 and Rochester Participatory Decision-Making Scale (RPAD).23
More often, health care services rely on self-report instruments for measuring patient satisfaction and experience. Surveys are often given to a patient when they leave hospital after a period of inpatient care, or the patient is asked to complete a questionnaire prior to discharge. Post discharge feedback may provide more reliable information about the quality of care because respondents have had time to reflect on their experiences.17 More recently, rapid feedback involving online surveys have also been used.24 Although some of the items in these surveys relate to patient participation in their health care, the focus is often patient satisfaction and experience, rather than involvement. A review of patient experience and satisfaction surveys conducted within public and private hospitals in Australia identified that 80% of surveys included items which related to patient participation in care decisions.25 The Australian Commission on Safety and Quality in Health Care has hosted a series of roundtable meetings where experts have provided advice towards the development of core common questions for hospital patient experience measurement. However, it is important to note that the evidence-base for criteria to measure patient participation in health care and improvements as a result of patient participation was not established.
This systematic review endeavors to provide an updated synthesis of evidence on effective strategies through which patient involvement in health care can be measured and assessed, with a goal of assisting health care services to demonstrate patient-centered care in practice and benchmark their performance on the international stage. The primary outcome for this review will be a preliminary list of evidence-based criteria used for assessing patient participation. Specifically, this will assist Australian health care services in demonstrating patient-centered care in practice as required in the National Safety and Quality Health Service Standard 2, 'Partnering with Consumers', but will be relevant internationally for facilities that measure patient participation.19 Limitations and future research needs addressing assessment and measurement of patient involvement in health care will also be identified.
Article Content
Inclusion criteria
Quantitative component
Types of participants
The review will include adults who are aged 18 years or over, who have received care in a health care environment, and their caregivers.
Types of intervention(s)
The quantitative component of the review will consider any instruments/tools that are used by health care services to assess or measure patient participation in health care.
Types of outcomes
The quantitative component of the review will consider studies that include any aspect of the psychometric properties (i.e. reliability, validity) of patient participation assessment tools.
Types of studies
The review will consider both experimental and epidemiological study designs including randomized controlled trials, non-randomized controlled trials, quasi-experimental, before and after studies, prospective and retrospective cohort studies, case control studies and analytical cross sectional studies for inclusion. Descriptive epidemiological study designs including case series, individual case reports and descriptive cross sectional studies will also be considered.
Qualitative component
Types of participants
The review will include adults who are aged 18 years or over, who have received care in a health care environment, and their caregivers. The qualitative component of the review will also include health providers who are involved in assessing patient participation in health care.
Phenomena of interest
The phenomena of interest for the qualitative component of this review includes the opinions, attitudes, perceptions or experiences of patients, their caregivers or health care providers towards strategies to assess patient participation in health care. The review aims to establish the suitability, feasibility and utility of the strategies identified. Aspects such as method of administration, the nature of the assessment questions (e.g. what experiences do they capture), acceptability to patient and health provider, and ease of use will be considered.
Context
The review will consider studies with a focus on assessment of patient participation in any health care setting.
Types of studies
The review will consider studies that focus on qualitative data including, but not limited to designs such as phenomenology, grounded theory, ethnography, action research and feminist research. The review will consider descriptive studies that report on qualitative strategies to assess patient participation in health care (e.g. interviews, focus groups).
Exclusion criteria
The review will exclude studies involving participants less than 18 years of age; studies published in languages other than English; non-research papers including commentary, literature reviews and expert opinion; and studies that measure patient involvement in research activities.
Search strategy
The search strategy will aim to find relevant published and unpublished studies. A three step search strategy will be undertaken. An initial scoping phase will be undertaken in the MEDLINE and CINAHL databases to identify appropriate medical subject headings (MeSH) terms and keywords, with consideration to the diverse terminology used and the spelling of keywords as this may influence identification of relevant trials. A second search using all of the identified keywords and index terms will then be undertaken across all the included databases. Thirdly, the reference lists of all identified reports and articles will be searched for additional studies.
Search strategies for individual databases will be developed in conjunction with a research methodologist for the following databases:
CINAHL
Cochrane Central Register of Controlled Trials
EBM reviews
EMBASE
JBI Library
MEDLINE
PsycINFO
The grey literature will also be consulted through searches of the following databases:
ProQuest Theses and Dissertations
Mednar
Google Scholar
Networked Digital Library of Theses and Dissertations
In addition, broader strategies will include hand searching of journals, contact with key individuals and organizations that have researched topics of relevance to the review, and reviewing relevant government health department websites of OECD countries (e.g. Australian Commission on Safety and Quality in Health Care).
The search will be limited to published studies from 2004 to 2014 that represent the most recent knowledge in this field. Initial keywords to be used will be: consumer participation, patient participation, patient involvement, patient empowerment, patient enabling, patient centeredness/centredness, consumer advocacy, quality improvement in health, service improvement in health, outcome and process assessment.
Studies located in the searches will be recorded in bibliographic software and duplicated entries will be removed. All identified studies will be independently assessed for relevance to the review based on title and abstract. Any disagreements that arise between the two reviewers regarding inclusion of studies will be resolved through discussion, or by a third reviewer. A full report will be retrieved for all studies that appear to meet the inclusion criteria.
Assessment of methodological quality
Research papers selected for retrieval will be assessed independently by a primary and secondary reviewer for methodological validity prior to inclusion in the review. The two reviewers will use the standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) for qualitative papers and from Joanna Briggs Institute Meta-Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI) for quantitative evidence. A critical appraisal tool developed by Fallon, Westaway et al.,26 and adapted by Ng, Brammer et al.,27 will be used for appraising psychometric studies (Appendix I). Any disagreements that arise between the two reviewers during the methodological assessment process will be resolved through discussion, or by a third reviewer.
Data collection
Data extraction will be conducted independently by two reviewers. Qualitative data will be extracted from papers included in the review using the standardized data extraction tool from JBI-QARI. Quantitative data will be extracted from papers included in the review using the standardized data extraction tool from JBI-MAStARI. A tool developed by Fallon, Westaway et al.,26 and adapted by Ng, Brammer et al.,27 will be used for extracting data from psychometric studies (Appendix II). The data extracted will include specific details about the study methods, populations, measurement tool development and psychometric testing, and outcomes of significance to the review question and specific objectives. Where possible, authors will be contacted for missing or incomplete data.
Data synthesis
Qualitative research findings will, where possible, be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality and categorizing these findings on the basis of similarity in meaning. These categories are then subjected to a meta-synthesis in order to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible, the findings will be presented in narrative form.
Quantitative papers will, where possible be pooled in statistical meta-analysis using JBI-MAStARI. All results will be subject to double data entry. Effect sizes expressed as odds ratios (for categorical data) and weighted mean differences (for continuous data) and their 95% confidence intervals will be calculated for analysis. Heterogeneity will be assessed statistically using the standard Chi-square and also explored using subgroup analyses based on the different quantitative study designs included in this review. Where statistical pooling is not possible, the findings will be presented in narrative form including tables and figures to aid in data presentation where appropriate.
Conflicts of interest
The reviewers have no conflicts of interest.
Acknowledgements
The reviewers acknowledge Deakin University's Strategic Research Center for Quality and Patient Safety (QPS) for funding this systematic review through the QPS-Research Grants Scheme.
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Appendix I: Appraisal instruments
QARI appraisal instrument
MAStARI appraisal instruments
Critical appraisal tool for psychometric studies[Context Link]
Appendix II: Data extraction instruments
QARI data extraction instrument
MAStARI data extraction instrument
Psychometric studies data extraction forms[Context Link]
Keywords: consumer participation; patient centeredness; centredness; patient involvement; patient participation; quality improvement in health; service improvement