Dataset Information

A Framework to Ensure Patient Partners Have Equal and Contributing Voices Throughout the Research Program Evaluation Process.

ABSTRACT: Purpose of program: Traditionally, peer review was a closed process conducted only by individuals working in the research field. To establish a more integrated and patient-centered approach, one of Canada's largest kidney research networks (Can-SOLVE CKD) has created a Research Operations Committee (ROC) that includes patients as key members. The ROC represents one way for achieving meaningful patient-oriented research (POR).

Source of information: Can-SOLVE CKD, a network created as part of the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR).

Methods: The ROC consists of patients, physicians, scientists, Indigenous partners, experts in research methodology, and a member of Can-SOLVE CKD's operational team. On an annual basis, Can-SOLVE CKD's research teams provide the ROC with a review package, which incorporates information from patient engagement check-in calls and surveys, the project's knowledge translation plan and products, and a progress report written by the project team. The ROC evaluates the review package and provides feedback and recommendations accordingly.

Key findings: The transparent nature of the process, regular feedback and review, along with an overt accountability and scoring system, has been embraced by both patients and researchers. As a result of the ROC process, the number of patient leads for each project has grown over a 3-year period and more researchers have received POR and cultural sensitivity training.

Limitations: While anecdotal evidence suggests this approach is beneficial for achieving POR, formal mechanisms of evaluation are currently lacking.

Implications: This ROC framework ensures patients are active contributors throughout the research process and could be adopted by other organizations to achieve a more patient-centered approach to research.

SUBMITTER: Hillier DR

PROVIDER: S-EPMC7705288 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

A Framework to Ensure Patient Partners Have Equal and Contributing Voices Throughout the Research Program Evaluation Process.

Hillier David R DR Tang Mila M Clark William W MacDonald Cynthia C Connolly Carol C Large Chantel C King Malcolm M Singer Joel J Levin Adeera A Manns Braden B Konvalinka Ana A Scholey James J Rosenblum Norman D ND

Canadian journal of kidney health and disease 20201126

<h4>Purpose of program</h4>Traditionally, peer review was a closed process conducted only by individuals working in the research field. To establish a more integrated and patient-centered approach, one of Canada's largest kidney research networks (Can-SOLVE CKD) has created a Research Operations Committee (ROC) that includes patients as key members. The ROC represents one way for achieving meaningful patient-oriented research (POR).<h4>Source of information</h4>Can-SOLVE CKD, a network created a ...[more]

PMID: 33294204

Similar Datasets

Project description:Storytelling is a powerful means to evoke empathy and understanding among people. When patient partners, which include patients, family members, caregivers and organ donors, share their stories with health professionals, this can prompt listeners to reflect on their practice and consider new ways of driving change in the healthcare system. However, a growing number of patient partners are asked to 'share their story' within health care and research settings without adequate support to do so. This may ultimately widen, rather than close, the gap between healthcare practitioners and people affected by chronic disease in this new era of patient and public involvement in research. To better support patient partners with storytelling in the context of a patient-oriented research network, Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) Network adapted an existing in-person storytelling workshop for patient educators within a hospital setting. The result is a 6-week virtual program called Storytelling for Impact, which guides patients, family members, caregivers and organ donors in developing impactful stories and sharing them at health care and research events, e.g., conferences. The online series of synchronous workshops is co-facilitated by story coaches, who are program alumni and Can-SOLVE CKD staff with trained storytelling experience. Each story follows a structure that includes a call to action, which aims to positively impact the priority-setting and delivery of care and research in Canada. The program has been a transformational process for many who have completed it, and numerous other health organizations have expressed interest in sharing this tool with their own patient partners. As result, we have also created an asynchronous online program that can be used by other interested parties outside our network. Patient partners who share their stories can be powerful mediators for inspiring changes in the health care and research landscape, with adequate structured support. We describe two novel programs to support patient partners in impactful storytelling, which are applicable across all health research disciplines. Additional resources are required for sustainability and scale up of training, by having alumni train future storytellers.

Project description:BackgroundPublic involvement in health services research is encouraged. Descriptions of public involvement across the whole research cycle of a major study are uncommon and its effects on research conduct are poorly understood.AimThis study aimed to describe how we implemented public involvement, reflect on process and effects in a large-scale multi-site research study and present learning for future involvement practice.MethodWe recorded public involvement roles and activities throughout the study and compared these to our original public involvement plan included in our project proposal. We held a group interview with study co-applicants to explore their experiences, transcribed the recorded discussion and conducted thematic analysis. We synthesized the findings to develop recommendations for future practice.ResultsPublic contributors' activities went beyond strategic study planning and management to include active involvement in data collection, analysis and dissemination. They attended management, scrutiny, planning and task meetings. They also facilitated public involvement through annual planning and review sessions, conducted a Public Involvement audit and coordinated public and patient input to stakeholder discussions at key study stages. Group interview respondents said that involvement exceeded their expectations. They identified effects such as changes to patient recruitment, terminology clarification and extra dissemination activities. They identified factors enabling effective involvement including team and leader commitment, named support contact, building relationships and demonstrating equality and public contributors being confident to challenge and flexible to meet researchers' timescales and work patterns. There were challenges matching resources to roles and questions about the risk of over-professionalizing public contributors.ConclusionWe extended our planned approach to public involvement and identified benefits to the research process that were both specific and general. We identified good practice to support effective public involvement in health services research that study teams should consider in planning and undertaking research.Public contributionThis paper was co-conceived, co-planned and co-authored by public contributors to contribute research evidence, based on their experiences of active involvement in the design, implementation and dissemination of a major health services research study.

Project description:IntroductionThe participation of general practitioners (GPs) in primary care research is variable and often poor. We aimed to develop a substantive and empirical theoretical framework to explain GPs' decision-making process to participate in research.MethodsWe used the grounded theory approach to construct a substantive theory to explain the decision-making process of GPs to participate in research activities. Five in-depth interviews and four focus group discussions were conducted among 21 GPs. Purposeful sampling followed by theoretical sampling were used to attempt saturation of the core category. Data were collected using semi-structured open-ended questions. Interviews were recorded, transcribed verbatim and checked prior to analysis. Open line-by-line coding followed by focus coding were used to arrive at a substantive theory. Memoing was used to help bring concepts to higher abstract levels.ResultsThe GPs' decision to participate in research was attributed to their inner drive and appreciation for primary care research and their confidence in managing their social and research environments. The drive and appreciation for research motivated the GPs to undergo research training to enhance their research knowledge, skills and confidence. However, the critical step in the GPs' decision to participate in research was their ability to align their research agenda with priorities in their social environment, which included personal life goals, clinical practice and organisational culture. Perceived support for research, such as funding and technical expertise, facilitated the GPs' participation in research. In addition, prior experiences participating in research also influenced the GPs' confidence in taking part in future research.ConclusionsThe key to GPs deciding to participate in research is whether the research agenda aligns with the priorities in their social environment. Therefore, research training is important, but should be included in further measures and should comply with GPs' social environments and research support.

Project description:BackgroundNormalisation Process Theory (NPT) is frequently used to inform qualitative research that aims to explain and evaluate processes that shape late-stage translation of innovations in the organisation and delivery of healthcare. A coding manual for qualitative researchers using NPT will facilitate transparent data analysis processes and will also reduce the cognitive and practical burden on researchers.Objectives(a) To simplify the theory for the user. (b) To describe the purposes, methods of development, and potential application of a coding manual that translates normalisation process theory (NPT) into an easily usable framework for qualitative analysis. (c) To present an NPT coding manual that is ready for use.MethodQualitative content analysis of papers and chapters that developed normalisation process theory, selection and structuring of theory constructs, and testing constructs against interview data and published empirical studies using NPT.ResultsA coding manual for NPT was developed. It consists of 12 primary NPT constructs and conforms to the Context-Mechanism-Outcome configuration of realist evaluation studies. Contexts are defined as settings in which implementation work is done, in which strategic intentions, adaptive execution, negotiating capability, and reframing organisational logics are enacted. Mechanisms are defined as the work that people do when they participate in implementation processes and include coherence-building, cognitive participation, collective action, and reflexive monitoring. Outcomes are defined as effects that make visible how things change as implementation processes proceed and include intervention mobilisation, normative restructuring, relational restructuring, and sustainment.ConclusionThe coding manual is ready to use and performs three important tasks. It consolidates several iterations of theory development, makes the application of NPT simpler for the user, and links NPT constructs to realist evaluation methods. The coding manual forms the core of a translational framework for implementation research and evaluation.

Project description:BackgroundCritical stakeholder-identified gaps in current health research engagement strategies include the exclusion of voices traditionally less heard and a lack of consideration for the role of trauma in lived experience. Previous work has advocated for a trauma-informed, intersectional, and critical reflexive approach to patient and public involvement in health research. The Valuing All Voices Framework embodies these theoretical concepts through four key components: trust, self-awareness, empathy, and relationship building. The goal of this framework is to provide the context for research teams to conduct patient engagement through the use of a social justice and health equity lens, to improve safety and inclusivity in health research. The aim of this study was to revise the proposed Valuing All Voices Framework with members of groups whose voices are traditionally less heard in health research.MethodsA qualitative descriptive approach was used to conduct a thematic analysis of participant input on the proposed framework. Methods were co-developed with a patient co-researcher and community organizations.ResultsGroup and individual interviews were held with 18 participants identifying as Inuit; refugee, immigrant, and/or newcomer; and/or as a person with lived experience of a mental health condition. Participants supported the proposed framework and underlying theory. Participant definitions of framework components included characterizations, behaviours, feelings, motivations, and ways to put components into action during engagement. Emphasis was placed on the need for a holistic approach to engagement; focusing on open and honest communication; building trusting relationships that extend beyond the research process; and capacity development for both researchers and patient partners. Participants suggested changes that incorporated some of their definitions; simplified and contextualized proposed component definitions; added a component of "education and communication"; and added a 'how to' section for each component. The framework was revised according to participant suggestions and validated through member checking.ConclusionsThe revised Valuing All Voices Framework provides guidance for teams looking to employ trauma-informed approaches, intersectional analysis, and critical reflexive practice in the co-development of meaningful, inclusive, and safe engagement strategies.Plain english summaryPatient engagement in health research continues to exclude many people who face challenges in accessing healthcare, including (but not limited to) First Nations, Inuit, and Metis people; immigrants, refugees, and newcomers; and people with lived experience of a mental health condition. We proposed a new guide to help researchers engage with patients and members of the public in research decision-making in a meaningful, inclusive, and safe way. We called this the Valuing All Voices Framework, and met with people who identify as members of some of these groups to help define the key parts of the framework (trust; self-awareness; empathy; and relationship building), to tell us what they liked and disliked about the proposed framework, and what needed to be changed. Input from participants was used to change the framework, including clarifying definitions of the key parts, adding another key part called "education and communication", and providing action items so teams can put these key parts into practice.

Project description:BackgroundSuccessful implementation of pay-for-quality (P4Q) programs mostly depends upon a valid, timely, and reliable data about quality measures generated by providers, and interpreted by payers. The aim of this study was to establish a data reporting method for P4Q program through an action research.MethodsQualitative method was used to align theory with action through a three-cycle action research. The study was conducted in September 15, 2015 to March 15, 2017, in East-Azerbaijan, Iran. The purposeful sampling was used to select participants. The participants included healthcare providers, staff in district health centers (DHC), experts, and managers in the provincial primary health center (PPHC). Data was collected by interviews, focus group discussions, and expert panels. Content analysis was used to synthesize the data. In each step, decisions about data reporting methods were made through a consensus of expert panel members.ResultsThe most important dimensions of data reporting method were data entry and accuracy, data reporting, data analysis and interpretations, the flexibility of method, and training. By establishment of an online data reporting system for the P4Q program, a major improvement was observed in the documentation of performance data, the satisfaction of health care providers and staff (e.g. either in DHCs or PPHC), improvement of the P4Q program and acceptance of the P4Q program by providers. Following the present study, the online system was expanded in Iran's public health system for data collection and estimating the amount of incentive payments in P4Q program. Moreover, more improvements were achieved by linking the system to EMRs and also, providing automated feedback to providers about their own performance.ConclusionsA web-based computerized system with the capability of linking medical record and also its ability to provide feedback to healthcare providers was identified as an appropriate method of data reporting in the P4Q program from the viewpoints of participants in this study.

Project description:BackgroundThere is a growing awareness of the need to adequately integrate sex and gender into health-related research. Although it is widely known that the entangled dimensions sex/gender are not comprehensively considered in most studies to date, current publications of conceptual considerations and guidelines often only give recommendations for certain stages of the research process and - to the best of our knowledge - there is a lack of a detailed guidance that accompanies each step of the entire research process. The interdisciplinary project "Integrating gender into environmental health research" (INGER) aimed to fill this gap by developing a comprehensive checklist that encourages sex/gender transformative research at all stages of the research process of quantitative health research. In the long term this contributes to a more sex/gender-equitable research.MethodsThe checklist builds on current guidelines on sex/gender in health-related research. Starting from important key documents, publications from disciplines involved in INGER were collected. Furthermore, we used a snowball method to include further relevant titles. The identification of relevant publications was continued until saturation was reached. 55 relevant publications published between 2000 and 2021 were identified, assessed, summarised and included in the developed checklist. After noticing that most publications did not cover every step of the research process and often considered sex/gender in a binary way, the recommendations were modified and enriched based on the authors' expertise to cover every research step and to add further categories to the binary sex/gender categories.ResultsThe checklist comprises 67 items in 15 sections for integrating sex/gender in quantitative health-related research and addresses aspects of the whole research process of planning, implementing and analysing quantitative health studies as well as aspects of appropriate language, communication of results to the scientific community and the public, and research team composition.ConclusionThe developed comprehensive checklist goes beyond a binary consideration of sex/gender and thus enables sex/gender-transformative research. Although the project INGER focused on environmental health research, no aspects that were specific to this research area were identified in the checklist. The resulting comprehensive checklist can therefore be used in different quantitative health-related research fields.

Dataset Information

A Framework to Ensure Patient Partners Have Equal and Contributing Voices Throughout the Research Program Evaluation Process.

Publications

A Framework to Ensure Patient Partners Have Equal and Contributing Voices Throughout the Research Program Evaluation Process.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets