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Patients, clinicians and researchers working together to improve cardiovascular health: a qualitative study of barriers and priorities for patient-oriented research.

ABSTRACT: OBJECTIVES:The overall goal of this study is to identify priorities for cardiovascular (CV) health research that are important to patients and clinician-researchers. We brought together a group of CV patients and clinician-researchers new to patient-oriented research (POR), to build a multidisciplinary POR team and form an advisory committee for the Libin Cardiovascular Institute of Alberta. DESIGN:This qualitative POR used a participatory health research paradigm to work with participants in eliciting their priorities. Therefore, participants were involved in priority setting, and analysis of findings. Participants also developed a plan for continued engagement to support POR in CV health research. SETTING:Libin Cardiovascular Institute of Alberta, Cumming School of Medicine, University of Calgary, Canada. PARTICIPANTS:A total of 23 participants, including patients and family caregivers (n=12) and clinician-researchers (n=11). RESULTS:Participants identified barriers and facilitators to POR in CV health (lack of awareness of POR and poor understanding on the role of patients) and 10 research priorities for improving CV health. The CV health research priorities include: (1) CV disease prediction and prevention, (2) access to CV care, (3) communication with providers, (4) use of eHealth technology, (5) patient experiences in healthcare, (6) patient engagement, (7) transitions and continuity of CV care, (8) integrated CV care, (9) development of structures for patient-to-patient support and (10) research on rare heart diseases. CONCLUSIONS:In this study, research priorities were identified by patients and clinician-researchers working together to improve CV health. Future research programme and projects will be developed to address these priorities. A key output of this study is the creation of the patient advisory council that will provide support and will work with clinician-researchers to improve CV health.

SUBMITTER: Santana MJ

PROVIDER: S-EPMC7044837 | biostudies-literature | 2020 Feb

REPOSITORIES: biostudies-literature

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Patients, clinicians and researchers working together to improve cardiovascular health: a qualitative study of barriers and priorities for patient-oriented research.

Santana Maria-Jose MJ Zelinsky Sandra S Ahmed Sadia S Doktorchik Chelsea C James Matthew M Wilton Stephen S Quan Hude H Fernandez Nicolas N Anderson Todd T Butalia Sonia S

BMJ open 20200206 2

<h4>Objectives</h4>The overall goal of this study is to identify priorities for cardiovascular (CV) health research that are important to patients and clinician-researchers. We brought together a group of CV patients and clinician-researchers new to patient-oriented research (POR), to build a multidisciplinary POR team and form an advisory committee for the Libin Cardiovascular Institute of Alberta.<h4>Design</h4>This qualitative POR used a participatory health research paradigm to work with par ...[more]

PMID: 32034018

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Project description:BackgroundRetinoblastoma is a childhood cancer of the eye that can have lifelong effects on patients and families. The purpose of this study was for people affected by retinoblastoma, clinicians and researchers to jointly determine the top 10 retinoblastoma research priorities in Canada.MethodsAn adaptation of the James Lind Alliance Priority Setting Partnership (PSP) methodology was employed. People were invited to participate in any stage of the priority-setting process if they were a resident of Canada, and were a patient with retinoblastoma (or a family member or friend of someone diagnosed with retinoblastoma) or a clinician or researcher interested in retinoblastoma. Patients were full partners in study design and implementation, and result dissemination, through involvement in a national working group (1 patient and 9 nonpatients) and steering committee (4 patients and 11 nonpatients). In phase 1 of the study, participants responded to an online survey that asked, "What questions about retinoblastoma would you like to see answered by research?" In phase 2, the steering committee reviewed and refined the list of survey responses and decided on a list of 30 questions to be ranked by means of the nominal group technique in phase 3, a priority-setting workshop.ResultsIn total, 175 retinoblastoma research questions were suggested by 59 survey participants (38 patients and 21 nonpatients). The categories with the greatest number of questions were genetics and molecular (45 [25.7%]), second cancer (29 [16.6%]) and psychosocial (27 [15.4%]). The top 10 questions as ranked by the workshop participants (10 patients and 10 nonpatients) fell into 7 categories: second cancer (2 questions), follow-up (2), psychosocial (2), treatment (1), diagnosis (1), global health (1) and miscellaneous (1). The early diagnosis of retinoblastoma was identified as the top retinoblastoma research priority in Canada.InterpretationThe list of priorities will serve as a resource for advocacy groups, research teams and funding agencies that focus on retinoblastoma. The inclusion of researchers as participants was an adaptation of the James Lind Alliance PSP methodology and enriched the research prioritization process.

Project description:BackgroundMeasurement-based care (MBC) is the practice of routinely administering standardized measures to support clinical decision-making and monitor treatment progress. Despite evidence of its effectiveness, MBC is rarely adopted in routine substance use disorder (SUD) treatment settings and little is known about the factors that may improve its adoptability in these settings. The current study gathered qualitative data from SUD treatment clinicians about their perceptions of MBC, the clinical outcomes they would most like to monitor in MBC, and suggestions for the design and implementation of MBC systems in their settings.MethodsFifteen clinicians from one publicly-funded and two privately-funded outpatient SUD treatment clinics participated in one-on-one research interviews. Interviews focused on clinicians' perceived benefits, drawbacks, and ideas related to implementing MBC technology into their clinical workflows. Interviews were audio recorded, transcribed, and coded to allow for thematic analysis using a mixed deductive and inductive approach. Clinicians also completed a card sorting task to rate the perceived helpfulness of routinely measuring and monitoring different treatment outcomes.ResultsClinicians reported several potential benefits of MBC, including improved patient-provider communication, client empowerment, and improved communication between clinicians. Clinicians also expressed potential drawbacks, including concerns about subjectivity in patient self-reports, limits to personalization, increased time burdens, and needing to learn to use new technologies. Clinicians generated several ideas and preferences aimed at minimizing burden of MBC, illustrating clinical changes over time, improving ease of use, and improving personalization. Numerous patient outcomes were identified as "very helpful" to track, including coping skills, social support, and motivation for change.ConclusionsMBC may be a beneficial tool for improving clinical care in SUD treatment settings. MBC tools may be particularly adoptable if they are compatible with existing workflows, help illustrate gradual and nonlinear progress in SUD treatment, measure outcomes perceived as clinically useful, accommodate multiple use cases and stakeholder groups, and are framed as an additional source of information meant to augment, rather than replace, existing practices and information sources.

Dataset Information

Patients, clinicians and researchers working together to improve cardiovascular health: a qualitative study of barriers and priorities for patient-oriented research.

Publications

Patients, clinicians and researchers working together to improve cardiovascular health: a qualitative study of barriers and priorities for patient-oriented research.

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