Dataset Information

Developing a patient and family research advisory panel to include people with significant disease, multimorbidity and advanced age.

ABSTRACT:

Background

People who have experienced illness due to significant disease, multimorbidity and/or advanced age are high utilizers of the health care system. Yet this population has had little formal opportunity to participate in guiding the health care research agenda, and few mechanisms exist for researchers to engage this population in an efficient way.

Objective

We describe the process of developing a standing patient and family advisory panel to incorporate this population's voice into research in the USA.

Methods

The panel was created at the University of Colorado. Preliminary panel development consisted of a needs assessment, information gathering and participant recruitment. We collected feedback from researchers who consulted with the panel and from panel members in order to better understand the experience from the patient and family member perspective.

Results

The patient and family research advisory panel consists of eight advisors who have experience with significant disease, multimorbidity and/or advanced age, two physicians and a program manager. The panel meets every other month for 2 hours with the main purpose of advising diverse researchers on health care studies.

Conclusion

People with significant disease, multimorbidity and/or advanced age represent a growing demographic in the USA, and their engagement in research is essential as the model of health care delivery moves from volume to value.

SUBMITTER: Portalupi LB

PROVIDER: S-EPMC6080532 | biostudies-literature | 2017 Jun

REPOSITORIES: biostudies-literature

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Publications

Developing a patient and family research advisory panel to include people with significant disease, multimorbidity and advanced age.

Portalupi Laura B LB Lewis Carmen L CL Miller Carl D CD Whiteman-Jones Kerry L KL Sather Kay A KA Nease Donald E DE Matlock Daniel D DD

Family practice 20170601 3

<h4>Background</h4>People who have experienced illness due to significant disease, multimorbidity and/or advanced age are high utilizers of the health care system. Yet this population has had little formal opportunity to participate in guiding the health care research agenda, and few mechanisms exist for researchers to engage this population in an efficient way.<h4>Objective</h4>We describe the process of developing a standing patient and family advisory panel to incorporate this population's vo ...[more]

PMID: 28122848

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Project description:ObjectivesDespite varying degrees in research training, most academic clinicians are expected to conduct clinical research. The objective of this research was to understand how clinical researchers of different skill levels include variables in a case report form for their clinical research.SettingThe setting for this research was a major academic institution in Beijing, China.ParticipantsThe target population was clinical researchers with three levels of experience, namely, limited clinical research experience, clinicians with rich clinical research experience and clinical research experts.MethodsUsing a qualitative approach, we conducted 13 individual interviews (face to face) and one group interview (n=4) with clinical researchers from June to September 2016. Based on maximum variation sampling to identify researchers with three levels of research experience: eight clinicians with limited clinical research experience, five clinicians with rich clinical research experience and four clinical research experts. These 17 researchers had diverse hospital-based medical specialties and or specialisation in clinical research.ResultsOur analysis yields a typology of three processes developing a case report form that varies according to research experience level. Novice clinician researchers often have an incomplete protocol or none at all, and conduct data collection and publication based on a general framework. Experienced clinician researchers include variables in the case report form based on previous experience with attention to including domains or items at risk for omission and by eliminating unnecessary variables. Expert researchers consider comprehensively in advance data collection and implementation needs and plan accordingly.ConclusionThese results illustrate increasing levels of sophistication in research planning that increase sophistication in selection for variables in the case report form. These findings suggest that novice and intermediate-level researchers could benefit by emulating the comprehensive planning procedures such as those used by expert clinical researchers.

Dataset Information

Developing a patient and family research advisory panel to include people with significant disease, multimorbidity and advanced age.

Background

Objective

Methods

Results

Conclusion

Publications

Developing a patient and family research advisory panel to include people with significant disease, multimorbidity and advanced age.

Similar Datasets

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