Policy-makers, private health insurers and healthcare providers increasingly believe that encouraging patients to play a more active role in their healthcare will improve quality, efficiency and health outcomes.1 Evidence suggests that incorporating patient experience into healthcare service design and delivery can positively influence a range of outcomes for both patients and the organization.2,3 Healthcare providers and health systems are continually working to ensure the care they provide is “patient-centered” and delivered in a way that fulfils patients’ needs and expectations.3 Incorporating patient experiences however, is proposed to extend beyond patient-centered care in that it not only allows patients to influence the re-designing of services, but it also allows staff and other stakeholders to actively collaborate to improve care delivery.4
Experience-based co-design (EBCD) emerged in the literature following implementation research within a healthcare service for patients with head and neck cancer in the UK.5,6 It is defined as a method for staff and consumers to engage in redesigning aspects of health service delivery7 and is guided by participatory action research (PAR) designs,8 which has underpinning principles of pragmatism, democracy and equity.9,10 As such, allowing patients and staff to express their personal stories regarding care delivery gives them a voice within the process which can be used to shape and improve future experiences for others. Although quantitative data can also be collected, stories from narrative interviews are intrinsic to data collection in EBCD.4 However, changing systems based on consumer stories can be challenging and issues of power and tension have been reported when conducting such research.3,8 Overcoming such challenges may lead to transformative change within a healthcare service.11
Traditionally, customer satisfaction surveys have been a predominant method for collecting data on patient experiences.3 Such surveys provide some insight into aspects of care; however, they are limited in their application of responses received. Further critique of traditional methods regarding patient experience data include a predominance on quantitative measures4 such as waiting times or quality of life2 or use of a “top-down” approach with the organizations’ goals at the forefront.8 In comparison, EBCD studies can include survey methods, as well as gather qualitative data as a consequence of in-depth interviews with patient and/or staff, observation of interactions between staff and consumers and/or video data of direct care experiences.3,5 Patient diarising and focus groups or workshops have also been reported as data collection methods.5 Gathering such rich data provides a deep understanding of the experience, perceptions and meaning of the experience. It is still unclear, however, how these approaches and data feedback can affect changes in service delivery in the organization.
A tool kit originally based on the work of Catherine Dale and further developed by the King's Fund in the UK7 provides a free resource for service planners to assist planning and implementation of the EBCD process. More specifically, the EBCD process is detailed as a cycle, comprising the steps of:
- Study planning and preparation
- Gathering data from staff (e.g. interview, observation, video)
- Obtaining patient experience data from patients/consumers (e.g. interview, video or audio recording, storyboards)
- “Communal” sharing by all parties and identifying common areas/issues that initiate emotional responses
- Actioning on identified issues in small groups of both staff and patients/consumers
- Review, evaluation and celebration of achievements.4,5
Experience-based co-design emphasizes engagement with consumers rather than just involvement,12 relying on collaboration and partnerships to improve the way in which patients and staff can interact within healthcare systems.13 As well as the study reported by Bate & Robert6 on patients with head and neck cancers, other studies incorporating EBCD have been undertaken in specific clinical care contexts, including acute care facilities, such as emergency departments,13 breast cancer care services,14 lung cancer care services15 as well as palliative care.16 A recent systematic review by Mulvale et al.8 reported a synthesis of 13 EBCD based studies in the field of child and youth mental health. The aim of the systematic review was to identify elements within included studies that aligned with the EBCD process rather than looking at effectiveness of the studies. Each included study was found to align with the principles and process of EBCD to some degree and a diverse range of approaches were found to collect data. This included storyboards, video, offering employment to participants as research colleagues, use of skilled interviewers, as well as strategies to ensure equality among members. The authors suggest the process was potentially useful for acknowledging issues of power imbalance between healthcare providers and patients/consumers, particularly for vulnerable populations.8 Recommendations for further research into the effects of the interventions were noted.
Doyle et al.2 suggest that patient experience, clinical effectiveness and patient safety are intertwined factors that should be examined and evaluated collectively when determining the function of a health service. Their systematic review synthesised 55 studies exploring links between the three factors. Results identified positive associations between patient experiences and subjectively/objectively measured outcomes such as adherence to treatment, preventative behaviours and use of resources. The authors urge personnel working within clinical environments to incorporate patient experiences into their service delivery as an integral measurement of quality. Robert et al.4 suggest patients can provide wisdom and insight regarding their clinical experiences and, as such, present ideas for change which may have been previously considered by those working within the system. Incorporation of patient and consumer perspectives into healthcare service delivery is recognized and promoted as being integral to health service quality.17,18
Although studies have been conducted regarding implementing EBCD methods within acute healthcare services, confusion exists regarding differentiation of the method from other patient engagement processes, such as patient-centered care. A scoping review on EBCD will enable mapping of concepts and terminology explication of methodological differences in such studies. It is also hoped that scoping the literature on EBCD in acute care health services will not only highlight where such studies are being conducted but also identify who is involved in the studies, as well as the types of methods and results being reported from implementing an EBCD project. A preliminary search of the JBI Database of Systematic Reviews and Implementation Reports as well as PubMed and CINAHL databases found no scoping reviews exploring elements of EBCD studies within acute care setting. A search of the PROSPERO database found no similar systematic review protocol registered or ongoing. This scoping review will follow methodology outlined by the Joanna Briggs Insitute (JBI)19 and findings will inform health service developers on the evidence for planning, implementing and evaluating effectiveness and impact of EBCD in acute care settings.
The review will consider studies that include participants involved in EBCD projects. Participants may be of any age and will include patients, consumers, staff and other stakeholders, including leaders within acute healthcare organizations.
Empowerment and equality are crucial concepts within participatory action research designs.20 With this in mind, the concepts of interest for this scoping review will explore where and how EBCD is being conducted and may include, but will not be limited to:
- Geographical locations, clinical settings and acute care services that have undertaken EBCD in the acute care context.
- Quantitative methods and results reported by studies that have undertaken EBCD, for example, patient satisfaction, staff satisfaction and number of quality improvement activities undertaken.
- Qualitative methods and findings reported by studies that have undertaken EBCD, for example, in-depth interviews, patient and carer focus groups, and staff focus groups.
The context for the review will be acute care hospital settings. Specific units or areas of practice within an acute care setting will also be considered for inclusion, such as intensive care units, cancer care services, etc. Studies undertaken in mental health units will only be included if the unit sits within an acute hospital setting.
Types of studies
This review will consider all types of qualitative, quantitative, economic and mixed methods research evidence. Quantitative studies may comprise experimental and quasi-experimental study designs including randomized controlled trials, non-randomized controlled trials, before and after studies and interrupted time-series studies. In addition, analytical observational studies including prospective and retrospective cohort studies, case-control studies and analytical cross-sectional studies will be considered for inclusion. This review will also consider descriptive observational study designs including case series, individual case reports and descriptive cross-sectional studies for inclusion. Cost-effectiveness studies or other research reports presenting economic evidence will also be considered.
Although predominantly a participatory action research method, qualitative studies on EBCD may also include phenomenological, ethnographic or grounded theory research studies. Other lower level study designs such as survey methods will also be considered.
If any qualitative or quantitative systematic reviews are found on the topic, they will be considered for inclusion also.
The search strategy will aim to find both published and unpublished studies. A three-step search strategy will be employed, with an initial limited search of PubMed and CINAHL undertaken. This will be followed by analysis of the text words contained in the title and abstracts of retrieved papers, and of the index terms used to describe the articles. This will inform the development of a search strategy which will be tailored for each information source. The reference lists of all studies selected for inclusion (including systematic reviews), will be screened for additional studies. A health research librarian will be consulted for advice regarding the search. Authors of primary studies or reviews will be contacted if any further information is necessary. The initial search terms can be seen in the search strategy for PubMed, as detailed in Appendix 1.
Studies published in English only will be included, due to limited translation resources. Studies from 2005 will be considered as this is the year seminal work surrounding EBCD methodology was published.5,6,21
The databases to be searched will include: PubMed, CINAHL, Embase, Scopus and PsycINFO.
The trial registers to be searched will include: Cochrane Register of Controlled Trials.
Websites to be searched will include: World Health Organization and Agency for Healthcare Research and Quality.
The search for unpublished studies will include: ProQuest Dissertations and Theses, MedNar and New York Academy of Medicine.
Following the search, all identified citations will be collated and uploaded into EndNote Version 18 (Clarivate Analytics, PA, USA) and duplicates removed. Titles and abstracts will then be screened by two independent reviewers for assessment against the inclusion criteria for the review. The full text of selected studies will be retrieved and assessed in detail against the inclusion criteria. Full text studies that do not meet the inclusion criteria will be excluded and reasons for exclusion will be provided in an appendix in the final systematic review report. The results of the search will be reported in full in the final report and presented in a PRISMA flow diagram.22 Any disagreements that arise between the reviewers, regarding studies to be included, will be resolved through discussion, or with a third reviewer.
A proposed table outlining data to be extracted is included as Appendix II. The primary goal of data extraction for this scoping review is to obtain a clear and logical view of the concepts and terminology surrounding EBCD in order to delineate specific features of the studies from other types of consumer engagement research. A secondary goal of data extraction is to capture specific details such as geographic location, focus and types of outcomes of the included studies. Data pertaining timing and method of evaluations will be identified as well other details relative to the research questions. The data extraction table may be modified and refined as the review progresses, to capture any other pertinent data. Authors of primary studies will be contacted if necessary to clarify any ambiguous or missing data.
Based on JBI scoping review guidelines19 to illustrate and summarize the main findings, results will be presented in tabular form, with a narrative summary describing how the results relate to the review objective and questions. The results will be classified under key conceptual categories that will be obtained during the data extraction process. These categories will relate back to the specific review objective of examining and mapping the research evidence regarding EBCD within acute care health settings. Specific sub-categories will relate back to the review questions and consist of:
- Identification and clarification of how EBCD has been reported in the literature.
- Geographical locations, clinical settings and types of acute care services that have reported implementing EBCD.
- Types of methods, findings and/or results reported as part of EBCD research.
Literature will then be tabulated using the following headings: research design, geographical location, year of publication, characteristics of study population, research outcomes and key findings as they relate to the specific review objectives.
Appendix I: Search strategy
Initial PubMed search
(((“acute care”) OR hospital)) AND (((((((((((((((“Experience-based co-design”) OR “Experience based design”) OR EBCD) OR “co-creation”) OR “co-design”) OR “co-production”) OR “Patient satisfaction”) OR “Patient experience*”) OR “Patient involvement”) OR “consumer engagement”) OR “Quality improvement”) OR “Staff experience*”) OR interview*) OR observation*)) AND ((((((“health research system*”) OR “service delivery”) OR “service design”) OR “health service redesign”) OR “service improvement”) OR “patient outcome”))
Appendix II: Proposed data extraction form
1. Coulter A, Ellins J. Effectiveness of strategies for informing, educating, and involving patients. BMJ
2007; 335 7609:24–27.
2. Doyle C, Lennox L, Bell D. A systematic review of evidence on the links between patient experience
and clinical safety and effectiveness. BMJ Open
2013; 3 1:e001570.
3. Coulter A, Locock L, Ziebland S, Calabrese J. Collecting data on patient experience
is not enough: they must be used to improve care. BMJ
4. Robert G, Cornwell J, Locock L, Purushotham A, Sturmey G, Gager M. Patients and staff as codesigners of healthcare services. BMJ
5. Donetto S, Tsianakas V, Robert G. Using Experience-based Co-design
(EBCD) to improve the quality of healthcare: mapping where we are now and establishing future directions [Internet]. London: King's College London; 2014.
6. Bate P, Robert G. Experience-based design: from redesigning the system around the patient to co-designing services with the patient. Qual Saf Health Care
2006; 15 5:307–310.
8. Mulvale A, Miatello A, Hackett C, Mulvale G. Applying experience-based co-design
with vulnerable populations: Lessons from a systematic review of methods to involve patients, families and service providers in child and youth mental health service improvement. Patient Exp J
2016; 3 1:117–129.
9. Cornwall A, Jewkes R. What is participatory research? Soc Sci Med
1995; 41 12:1667–1676.
10. Koch T, Kralik D. Participatory action research in health care. Oxford; Malden MA: Blackwell Pub; 2006.
11. Pickles J, Hide E, Maher L. Experience based design: a practical method of working with patients to redesign services. Clin Gov
2008; 13 1:51–58.
12. Forbat L, Cayless S, Knighting K, Cornwell J, Kearney N. Engaging patients in health care: an empirical study of the role of engagement on attitudes and action. Patient Educ Couns
2009; 74 1:84–90.
13. Iedema R, Merrick E, Piper D, Britton K, Gray J, Verma R, et al. Codesigning as a discursive practice in emergency health services: the architecture of deliberation. J Appl Behav Sci
2010; 46 1:73–91.
14. Boyd H, McKernon S, Mullin B, Old A. Improving healthcare through the use of co-design
. NZ Med J [Internet]
15. Tsianakas V, Robert G, Maben J, Richardson A, Dale C, Wiseman T. Implementing patient-centred cancer care: using experience-based co-design
to improve patient experience
in breast and lung cancer services. Support Care Cancer
2012; 20 11:2639–2647.
16. Borgstrom E, Barclay S. Experience-based design, co-design
and experience-based co-design
in palliative and end-of-life care. BMJ Support Palliat Care [Internet]
17. Australian Commission on Safety and Quality in Health Care (ACSQHC). Patient-Centred Care: Improving quality and safety by focusing on patients and consumers. Discussion Paper [Internet]
18. Institute for Patient and Family Centered Care. Advancing the Practice of Patient and family centered care in hospitals; How to Get Started…[Internet]. 2017. [Cited October 24, 2017]; Available from: http://www.ipfcc.org/resources/getting_started.pdf
19. The Joanna Briggs Institute, Peters MDJ, Godfrey C, McInerney P, Baldini Soares C, Khalil H, Parker D. Aromataris E, Munn Z. Chapter 11: Scoping Reviews. Joanna Briggs Institute Reviewer's Manual
20. Baum F, MacDougall C, Smith D. Participatory action research. J Epidemiol Community Health
2006; 60 10:854–857.
22. Moher D, Liberati A, Tetzlaff J, Altman DG. The PRISMA Group. Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement. PLoS Med
2009; 6 6:e1000097.