Mixed Method Design : Principles and Procedures

Over the last 10 years, patient engagement in health research has emerged as the next evolution in healthcare research. However, limited evidence about the clear role and scope of patient engagement in health research and a lack of evidence about its impact have influenced the uptake, implementation and ongoing evolution of patient engagement. The present study aims to conduct a scoping review to identify methods for and outcomes of patient engagement in health research. An adaptation of the scoping review methodology originally described by Arksey and O’Malley and updated by Levac, Colquhoun and O’Brien was applied. Sources from a formal database search and relevant documents from a grey literature search were compiled into data extraction tables. Articles were synthesised into key themes according to the (1) methods and (2) outcomes of patient engagement in health research. The total yield for the scoping review was 55 records from across Canada, the United Kingdom and the United States. While evidence about the methods used to engage patients in health research is increasing, stronger evidence of specific patient and healthcare system outcomes is required. This necessitates further mobilisation of research that explores outcomes and that validates specific tools to evaluate engagement. Additionally, theoretical frameworks that can better inform and sustain patient engagement across the lifecycle of health research are lacking. Further increasing the volume and reach of evidence about patient engagement in health research will support the paradigmatic shift needed to normalise the patient’s role in research beyond ‘subject’ or ‘participant’, so as to ultimately improve patient health outcomes and better address healthcare reform in Canada.

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Patient engagement in Canada: a scoping review of the ‘how’ and ‘what’ of patient engagement in health research

The Precision Medicine Initiative's All of Us Research Program: an agenda for research on its ethical, legal, and social issues

Beyond the rhetorical call for increasing patients' engagement, policy makers recognize the urgency to have an evidence-based measure of patients' engagement and capture its effect when planning and implementing initiatives aimed at sustaining the engagement of consumers in their health. In this paper, authors describe the Patient Health Engagement Scale (PHE-scale), a measure of patient engagement that is grounded in rigorous conceptualization and appropriate psychometric methods. The scale was developed based on our previous conceptualization of patient engagement (the PHE-model). In particular, the items of the PHE-scale were developed based on the findings from the literature review and from interviews with chronic patients. Initial psychometric analysis was performed to pilot test a preliminary version of the items. The items were then refined and administered to a national sample of chronic patients (N = 382) to assess the measure's psychometric performance. A final phase of test-retest reliability was performed. The analysis showed that the PHE Scale has good psychometric properties with good correlation with concurrent measures and solid reliability. Having a valid and reliable measure to assess patient engagement is the first step in understanding patient engagement and its role in health care quality, outcomes, and cost containment. The PHE Scale shows a promising clinical relevance, indicating that it can be used to tailor intervention and assess changes after patient engagement interventions.

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Measuring patient engagement: development and psychometric properties of the Patient Health Engagement (PHE) Scale

The literature on mixed methods and multimethods has burgeoned over the last 20 years, and researchers from a growing number and diversity of fields have progressively embraced these approaches However, rapid growth in any movement inevitably gives rise to gaps or shortcomings, such as “identity crises” or divergent conceptual views Although some authors draw a clear and sometimes opinionated distinction between mixed methods and multimethods, for others, they are synonymous The concepts underlying both terms therefore have become blurred and generated much confusion The aim of this article is to explore the origins of the confusion, describe our view of mixed methods and multimethod studies, and by doing so, help to clearly delineate the two concepts The authors have presented their opinion of how these terms and concepts should be distinguished and call for a constructive debate of the issues involved in the mixed methods and multimethod literature This is a way truly to propel the field forward

Revisiting the difference between mixed methods and multimethods: Is it all in the name?

Extensive literature exists on public involvement or engagement, but what actual tools or guides exist that are practical, tested and easy to use specifically for initiating and implementing patient and family engagement, is uncertain. No comprehensive review and synthesis of general international published or grey literature on this specific topic was found. A systematic scoping review of published and grey literature is, therefore, appropriate for searching through the vast general engagement literature to identify ‘patient/family engagement’ tools and guides applicable in health organization decision-making, such as within Alberta Health Services in Alberta, Canada. This latter organization requested this search and review to inform the contents of a patient engagement resource kit for patients, providers and leaders. Search terms related to ‘patient engagement’, tools, guides, education and infrastructure or resources, were applied to published literature databases and grey literature search engines. Grey literature also included United States, Australia and Europe where most known public engagement practices exist, and Canada as the location for this study. Inclusion and exclusion criteria were set, and include: English documents referencing ‘patient engagement’ with specific criteria, and published between 1995 and 2011. For document analysis and synthesis, document analysis worksheets were used by three reviewers for the selected 224 published and 193 grey literature documents. Inter-rater reliability was ensured for the final reviews and syntheses of 76 published and 193 grey documents. Seven key themes emerged from the literature synthesis analysis, and were identified for patient, provider and/or leader groups. Articles/items within each theme were clustered under main topic areas of ‘tools’, ‘education’ and ‘infrastructure’. The synthesis and findings in the literature include 15 different terms and definitions for ‘patient engagement’, 17 different engagement models, numerous barriers and benefits, and 34 toolkits for various patient engagement and evaluation initiatives. Patient engagement is very complex. This scoping review for patient/family engagement tools and guides is a good start for a resource inventory and can guide the content development of a patient engagement resource kit to be used by patients/families, healthcare providers and administrators.

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‘Practical’ resources to support patient and family engagement in healthcare decisions: a scoping review

Aim: Chronic illness or disability in children can have a deleterious effect on the psychosocial health of well siblings. This systematic review synthesised evidence from studies evaluating sibling-oriented care aimed at improving behavioural and emotional outcomes in well siblings of children with chronic illness or disability.

Methods:  Twenty electronic databases were searched. Study selection, data extraction and assessment of methodological quality were performed by two independent reviewers.

Results:  Five controlled and nine uncontrolled studies were included. In higher-quality controlled trials, benefits of sibling-oriented care included reduced anxiety, improved mood and behavioural adjustment; however, these findings were not consistently demonstrated across studies. Study differences made it difficult to determine which sibling care features were most salient.

Conclusions:  Study findings highlight the potential for enhancing emotional and behavioural outcomes in well siblings. Future evaluations need to clearly identify the intended purpose of the care (what improvements are intended) and which types of siblings are most likely to benefit. This approach may yield more consistent and clinically important results.

A systematic review of interventions to support siblings of children with chronic illness or disability.

To determine what resources, preparation, and support are needed for patients, providers, and leaders to meaningfully and appropriately engage in patient-centred health system redesign, researchers sought stakeholder groups. A qualitative descriptive design was selected using purposive participant samp ‘what’ and ‘why’ questions pertaining to stakeholder perceptions about patient engagemen patients, providers or leaders. Four project groups were selected; each group was responsible for a strategic initiative with Alberta Health Services and represented one of three different levels of the healthcare system (i governance). Semi-structured question guides were used to collect data. Thematic analysis of the transcribed participant responses revealed eleven major themes: and timing of engagement; recruitment and commitment; governance and structure; kno importance of communication around the reasons for patient engagement including building trust through collaboration clearly identifying goals, along with their roles and responsibilities. development of tools, resources and education materials required to support patient engagement activities tailored to the needs, understandings and perspectives of stakeholders.

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Meaningful and effective patient engagement: What matters most to stakeholders

A Canadian health authority developed a patient engagement framework, but had no standard resources or supports to prepare staff, leaders or patients/families for meaningful patient engagement. A study was conducted to determine what resources, preparation and supports were needed for patients, providers and leaders to be meaningfully engaged in patient-centred care decisions, and for the contents of a resource ‘kit.’ A multi-phased mixed methods approach included a needs assessment with patients, providers and leaders on what was essential for the patient engagement experience; a scoping literature review on appropriate resources; a patient engagement ‘Resource Kit’ based on findings; and a pilot and evaluation of the kit. This integrated approach resulted in a resource kit that was relevant in terms of content, comprehensive in the volume of resources, and tailored to the unique needs of patients/families, providers and leaders. Continuing evolution and evaluation of the kit was seen as critical.

Exploring patient engagement practices and resources within a health care system: Applying a multi-phased mixed methods knowledge mobilization approach

Jennifer Gallivan

Papers

‘Practical’ resources to support patient and family engagement in healthcare decisions: a scoping review

A systematic review of interventions to support siblings of children with chronic illness or disability.

Meaningful and effective patient engagement: What matters most to stakeholders

Exploring patient engagement practices and resources within a health care system: Applying a multi-phased mixed methods knowledge mobilization approach