Key ingredients for successful collaboration in health research: perspectives of patient research partners.

BACKGROUND: There are increasing publications on meaningful collaboration between researchers and patient research partners (PRPs), but fewer publications of such work from the PRP perspective using an evaluation framework. Our aim is to present our own perspectives and reflections on meaningful collaboration as PRPs working on a qualitative research study. MAIN BODY: We were part of a study team that comprised of PRPs, clinicians and academic researchers, and was led by a PRP. The team designed and conducted a qualitative study aimed at understanding how patients make decisions around tapering of biologics for inflammatory bowel disease. The study was conducted online. The PRP lead was trained in qualitative methodology through a one-year certificate program called Patient and Community Engagement Research offered through the University of Calgary Continuing Education. We had received patient-oriented research training and qualitative research training prior to this project. Team members were assigned tasks by our group lead based on member interests and willingness. Some group members were part of the Strategy for Patient-Oriented Research, Inflammation, Microbiome, and Alimentation: Gastro-Intestinal and Neuropsychiatric Effects Network, one of five chronic disease networks in the Strategy for Patient Oriented Research initiative of the Canadian Institutes of Health Research. We describe the five key ingredients to successful collaboration based on our experiences and reflections utilizing the Experience-Reflection-Action Cycle as our framework. The five key ingredients that we identified were: inclusiveness, goal and role clarity, multi-level training and capacity building, shared decision making, and a supportive team lead. CONCLUSION: Overall, our experience was positive. With successful collaboration came an increased level of trust, commitment and performance. There is a need for more studies with diverse PRPs in different settings to validate and/or identify additional factors to improve collaboration in patient-oriented research.

Measuring the Impact of Patient Engagement in Health Research: An Exploratory Study Using Multiple Survey Tools.

Background: Studies report various ways in which patients are involved in research design and conduct. Limited studies explore the influence of patient engagement (PE) at each research stage in qualitative research from the perspectives of all stakeholders. Methods: We established two small research groups, a Patient Researcher-Led Group and an Academic Researcher-Led Group. We recruited patient research partners (PRP; n = 5), researchers (n = 5), and clinicians (n = 4) to design and conduct qualitative research aimed at identifying candidate attributes related to patient preferences for tapering biologic treatments in inflammatory bowel disease. We administered surveys before starting, two months into, and post-project work. The surveys contained items from three PE evaluation tools. We assessed the two groups regarding the influence and impact each stakeholder had during the different research stages. Results: PRPs had a moderate or a great deal of influence on the critical research activities across the research stages. They indicated moderate/very/extremely meaningful engagement and agreed/strongly agreed impact of PE. PRPs helped operationalize the research question; design the study and approach; develop study materials; recruit participants; and collect and interpret the data. Conclusion: The three tools together provide deeper insight into the influence of PE at each research stage. Lessons learnt from this study suggest that PE can impact many aspects of research including the design, process, and approach in the context of qualitative research, increasing the patient-centeredness of the study. More comprehensive validated tools are required that work with a more diverse subject pool and in other contexts.

Studying How Patient Engagement Influences Research: A Mixed Methods Study.

BACKGROUND: There is evidence supporting the value of patient engagement (PE) in research to patients and researchers. However, there is little research evidence on the influence of PE throughout the entire research process as well as the outcomes of research engagement. The purpose of our study is to add to this evidence. METHODS: We used a convergent mixed method design to guide the integration of our survey data and observation data to assess the influence of PE in two groups, comprising patient research partners (PRPs), clinicians, and researchers. A PRP led one group (PLG) and an academic researcher led the other (RLG). Both groups were given the same research question and tasked to design and conduct an inflammatory bowel disease (IBD)-related patient preference study. We administered validated evaluation tools at three points and observed PE in the two groups conducting the IBD study. RESULTS: PRPs in both groups took on many operational roles and influenced all stages of the IBD-related qualitative study: launch, design, implementation, and knowledge translation. PRPs provided more clarity on the study design, target population, inclusion-exclusion criteria, data collection approach, and the results. PRPs helped operationalize the project question, develop study material and data collection instruments, collect data, and present the data in a relevant and understandable manner to the patient community. The synergy of collaborative partnership resulted in two projects that were patient-centered, meaningful, understandable, legitimate, rigorous, adaptable, feasible, ethical and transparent, timely, and sustainable. CONCLUSION: Collaborative and meaningful engagement of patients and researchers can influence all stages of qualitative research including design and approach, and outputs.

Exploring the outcomes of research engagement using the observation method in an online setting.

OBJECTIVE: The objective of this study was to explore the outcomes of research engagement (patient engagement, PE) in the context of qualitative research. DESIGN: We observed engagement in two groups comprised of patients, clinicians and researchers tasked with conducting a qualitative preference exploration project in inflammatory bowel disease. One group was led by a patient research partner (PLG, partner led group) and the other by an academic researcher (RLG, researcher led group). A semistructured guide and a set of critical outcomes of research engagement were used as a framework to ground our analysis. SETTING: The study was conducted online. PARTICIPANTS: Patient research partners (n=5), researchers (n=5) and clinicians (n=4) participated in this study. MAIN OUTCOME MEASURES: Transcripts of meetings, descriptive and reflective observation data of engagement during meetings and email correspondence between group members were analysed to identify the outcomes of PE. RESULTS: Both projects were patient-centred, collaborative, meaningful, rigorous, adaptable, ethical, legitimate, understandable, feasible, timely and sustainable. Patient research partners (PRPs) in both groups wore dual hats as patients and researchers and influenced project decisions wearing both hats. They took on advisory and operational roles. Collaboration seemed easier in the PLG than in the RLG. The RLG PRPs spent more time than their counterparts in the PLG sharing their experience with biologics and helping their group identify a meaningful project question. A formal literature review informed the design, project materials and analysis in the RLG, while the formal review informed the project materials and analysis in the PLG. A PRP in the RLG and the PLG lead leveraged personal connections to facilitate recruitment. The outcomes of both projects were meaningful to all members of the groups. CONCLUSIONS: Our findings show that engagement of PRPs in research has a positive influence on the project design and delivery in the context of qualitative research in both the patient-led and researcher-led group.

Knowledge translation resources to support the use of quality of life assessment tools for the care of older adults living at home and their family caregivers.

PURPOSE: To support the use of quality of life (QOL) assessment tools for older adults, we developed knowledge translation (KT) resources tailored for four audiences: (1) older adults and their family caregivers (micro), (2) healthcare providers (micro), (3) healthcare managers and leaders (meso), and (4) government leaders and decision-makers (macro). Our objectives were to (1) describe knowledge gaps and resources and (2) develop corresponding tailored KT resources to support use of QOL assessment tools by each of the micro-, meso-, and macro-audiences. METHODS: Data were collected in two phases through semi-structured interviews/focus groups with the four audiences in Canada. Data were analyzed using qualitative description analysis. KT resources were iteratively refined through formative evaluation. RESULTS: Older adults and family caregivers (N = 12) wanted basic knowledge about what "QOL assessment" meant and how it could improve their care. Healthcare providers (N = 13) needed practical solutions on how to integrate QOL assessment tools in their practice. Healthcare managers and leaders (N = 14) desired information about using patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in healthcare programs and quality improvement. Government leaders and decision-makers (N = 11) needed to know how to access, use, and interpret PROM and PREM information for decision-making purposes. Based on these insights and evidence-based sources, we developed KT resources to introduce QOL assessment through 8 infographic brochures, 1 whiteboard animation, 1 live-action video, and a webpage. CONCLUSION: Our study affirms the need to tailor KT resources on QOL assessment for different audiences. Our KT resources are available: www.healthyqol.com/older-adults .

A research agenda to improve patients' experience of knee replacement surgery: a patient-oriented modified Delphi study of patients of South Asian origin in British Columbia.

BACKGROUND: Up to 1 in 5 patients who undergo total knee arthroplasty (TKA) express dissatisfaction with their surgery. Our goal was to understand the experiences of patients of South Asian origin who undergo TKA and to identify a research agenda for this patient population. METHODS: We undertook a modified Delphi study in British Columbia to generate and prioritize potential research topics. An initial list of topics was generated using 3 focus groups with patients of South Asian origin who underwent TKA and their caregivers. Focus group sessions were audiotaped and transcribed, and the data were analyzed using thematic analysis. The resulting Delphi question-naire was administered over 2 rounds to patients, caregivers and health professionals. The second-round questionnaire included only topics that were strongly supported in the first round. A patient-oriented approach was adopted, with 3 patient partners as full research team members, who contributed to scoping, design, data collection, analysis and interpretation. RESULTS: Twenty-one patients who had undergone TKA and 6 caregivers attended the focus groups. Our analyses resulted in 6 broad themes and 25 research topics, all of which were presented in the first round of the Delphi survey. The survey was completed by 27 patients and 5 caregivers (54% combined response rate) and by 25 clinicians (76% response rate). Top priorities both for patients and caregivers and for clinicians were promoting exercise following surgery and self-management after hospital discharge. One of the highest ranked topics for patients and caregivers was improving knee implants; this was supported by only 60% of clinicians. INTERPRETATION: The patients and caregivers in our study prioritized research on promotion of exercise and self-management following surgery and improvement in knee implants. Future patient-oriented research efforts in Canada should emphasize these topics for this patient population.

Revisiting patient satisfaction following total knee arthroplasty: a longitudinal observational study.

BACKGROUND: Total knee arthroplasty (TKA) is the most common joint replacement surgery in Canada. Earlier Canadian work reported 1 in 5 TKA patients expressing dissatisfaction following surgery. A better understanding of satisfaction could guide program improvement. We investigated patient satisfaction post-TKA in British Columbia (BC). METHODS: A cohort of 515 adult TKA patients was recruited from across BC. Survey data were collected preoperatively and at 6 and 12 months, supplemented by administrative health data. The primary outcome measure was patient satisfaction with outcomes. Potential satisfaction drivers included demographics, patient-reported health, quality of life, social support, comorbidities, and insurance status. Multivariable growth modeling was used to predict satisfaction at 6 months and change in satisfaction (6 to 12 months). RESULTS: We found dissatisfaction rates ("very dissatisfied", "dissatisfied" or "neutral") of 15% (6 months) and 16% (12 months). Across all health measures, improvements were seen post-surgery. The multivariable model suggests satisfaction at 6 months is predicted by: pre-operative pain, mental health and physical health (odds ratios (ORs) 2.65, 3.25 and 3.16), and change in pain level, baseline to 6 months (OR 2.31). Also, improvements in pain, mental health and physical health from 6 to 12 months predicted improvements in satisfaction (ORs 1.24, 1.30 and 1.55). CONCLUSIONS: TKA is an effective intervention for many patients and most report high levels of satisfaction. However, if the TKA does not deliver improvements in pain and physical health, we see a less satisfied patient. In addition, dissatisfied TKA patients typically see limited improvements in mental health.

The importance of informational, clinical and personal support in patient experience with total knee replacement: a qualitative investigation.

BACKGROUND: Total knee arthroplasty (TKA) is the most frequently performed joint replacement surgery in North America. Patient perspectives on TKA have been investigated in various ways, including finding as many as 20% of TKA patients are dissatisfied with their surgical outcomes. Understanding the patient experience with TKA broadly and in relation to patient satisfaction is a key gap in existing literature. METHODS: We report on the qualitative component of a mixed methods prospective cohort study examining patient experience and satisfaction post-TKA for adults in British Columbia, Canada. Data collection consisted of 45 in-depth interviews about individuals' knee surgery experiences conducted eight months after surgery. Analysis consisted of thematic coding by multiple coders. RESULTS: Participants' descriptions of their TKA experiences were primarily concerned with support, or the provision of aid and assistance. Support was insufficient when their expectations of support were not met; unmet support expectations led to an overall negative TKA experience. Support operated in three key domains: (1) informational support, (2) clinical support, and (3) personal support. Key sources of informational and clinical support included pre-optimisation clinics, surgeons, and physiotherapists. Key topics for informational support included pain, pain management, and recovery trajectories. Personal support was provided by family, friends, other TKA patients, employers, and themselves. CONCLUSIONS: Patient needs and expectations for support are shaped both before and after TKA surgery. Patients with an overall positive TKA experience had improvement in their knee pain, stiffness or functioning post-TKA, had their major expectations and needs for support met during their TKA recovery, and believed that any significant future expectations or needs for ongoing support would be adequately met. In contrast, patients with an overall negative TKA experience had at least one major expectation or need for support not met during their TKA recovery, even in cases where they had good TKA outcomes. Suggested interventions to improve the experience of persons receiving TKA include an expanded patient navigator model, revised pre-surgery educational materials, particularly around pain expectations and management, and comprehensive sharing of other patients' TKA experience.

Perceptions of individuals living with spinal cord injury toward preference-based quality of life instruments: a qualitative exploration.

BACKGROUND: Generic preference-based health-related quality of life instruments are widely used to measure health benefit within economic evaluation. The availability of multiple instruments raises questions about their relative merits and recent studies have highlighted the paucity of evidence regarding measurement properties in the context of spinal cord injury (SCI). This qualitative study explores the views of individuals living with SCI towards six established instruments with the objective of identifying 'preferred' outcome measures (from the perspective of the study participants). METHODS: Individuals living with SCI were invited to participate in one of three focus groups. Eligible participants were identified from Vancouver General Hospital's Spine Program database; purposive sampling was used to ensure representation of different demographics and injury characteristics. Perceptions and opinions were solicited on the following questionnaires: 15D, Assessment of Quality of Life 8-dimension (AQoL-8D), EQ-5D-5L, Health Utilities Index (HUI), Quality of Well-Being Scale Self-Administered (QWB-SA), and the SF-36v2. Framework analysis was used to analyse the qualitative information gathered during discussion. Strengths and limitations of each questionnaire were thematically identified and managed using NVivo 9 software. RESULTS: Major emergent themes were (i) general perceptions, (ii) comprehensiveness, (iii) content, (iv) wording and (v) features. Two sub-themes pertinent to content were also identified; 'questions' and 'options'. All focus group participants (n = 15) perceived the AQoL-8D to be the most relevant instrument to administer within the SCI population. This measure was considered to be comprehensive, with relevant content (i.e. wheelchair inclusive) and applicable items. Participants had mixed perceptions about the other questionnaires, albeit to varying degrees. CONCLUSIONS: Despite a strong theoretical underpinning, the AQoL-8D (and other AQoL instruments) is infrequently used outside its country of origin (Australia). Empirical comparative analyses of the favoured instruments identified in this qualitative study are necessary within the context of spinal cord injury.

First-line nurse leaders' health-care change management initiatives.

AIM: To examine nurse leaders' change management projects within British Columbia, Canada. BACKGROUND: British Columbia Nursing Leadership Institute 2007-10 attendees worked on year-long change management initiatives/projects of importance to their respective health-care institutions. Most leaders were in first-line positions with <3 years' experience. METHOD: Consenting leaders' project reports (N = 133) were content analysed for specific themes: types of projects; scope of projects (e.g. unit or local level, departmental, institutional); influence targets or key stakeholder groups targeted by the projects; leadership successes and challenges. RESULTS: Of study participants, 77% successfully completed their projects. Staff tool and resource development and existing services improvement were major project types. Care delivery teams were the major influence targets. Only 25% of projects were at the unit level. Many projects had broader scopes, such as institutional levels. Participants cited multiple leadership successes, including enhanced leadership styles and organizational skills. CONCLUSION: First-line nurse leaders were able to successfully manage projects beyond their traditional scope of responsibilities. The majority of projects dealt with staff needs and healthcare restructuring initiatives. IMPLICATIONS FOR NURSING MANAGEMENT: Constant change is a global reality. Change management, a universal competency, must be included in leadership development programmes.

An empowerment framework for nursing leadership development: supporting evidence.

AIM: This article is a report on a descriptive study of nurse leaders' perspectives of the outcomes of a formal leadership programme. BACKGROUND: Effective nurse leaders are necessary to address complex issues associated with healthcare systems reforms. Little is known about the types of leadership development programmes that most effectively prepare nurse leaders for healthcare challenges. When nurse leaders use structural and psychological empowerment strategies, the results are safer work environments and better nurse outcomes. The leadership development programme associated with this study is based on a unifying theoretical empowerment framework to empower nurse leaders and enable them to empower others. METHODS: Twenty seven front-line and mid-level nurse leaders with variable years of experience were interviewed for 1 year after participating in a formal leadership development programme. Data were gathered in 2008-2009 from four programme cohorts. Four researchers independently developed code categories and themes using qualitative content analysis. RESULTS: Evidence of leadership development programme empowerment included nurse leader reports of increased self-confidence with respect to carrying out their roles and responsibilities; positive changes in their leadership styles; and perceptions of staff recognition of positive stylistic changes. Regardless of years of experience, mid-level leaders had a broader appreciation of practice environment issues than front-line leaders. Time for reflection was valuable to all participants, and front-line leaders, in particular, appreciated the time to discuss nurse-specific issues with their colleagues. CONCLUSION: This study provides evidence that a theoretical empowerment framework and strategies can empower nurse leaders, potentially resulting in staff empowerment.

Online knowledge networking: what leaders need to know.

Knowledge networks (KNs) are leadership tools that can increase social capital and innovation in and across organizations. Communities of practice often emerge from successful KNs. Electronic or online KNs can maximize efficiency and effectiveness of communications and collaboration. The authors describe the benefits associated with KNs. They provide an overview of the development, facilitation, and evaluation of online KNs. An example of a nursing leadership online KN illustrates the key considerations involved in the KN process.