August 2, 2017
Sarah Madrid
Co-Chair, HCSRN Patient Engagement in Research SIG
Institute for Health Research, Kaiser Permanente or Colorado
A presentation of the Southern California Regional Dissemination, Implementation and Improvement Science Webinar Series
Provided by the UCLA CTSI
Tricks of the Trade: Patient Recruitment & Retention for Different Study TypesImperial CRS
In efforts to raise the bar for medical advancement, clinical trials are growing increasingly complex. This complexity, more often than not, leads to costly delays in enrollment. In this ebook, we'll take a look at 4 case studies for different study types, and examine the unique factors to consider during planning.
Basic Study Recruitment and Regulatory Issues: Which Methods are Appropriate?CTSI at UCSF
Presentation by Laurie Herraiz, RD, CCRP in May 2012 at CHR sponsored workshop on UCSF Campus. Topics include, basics of regulatory and recruitment, iMedrRIS application instructions, waivers of consent/authorization for recruitment purposes, examples of approved recruitment materials, and common challenges to recruitment.
Clinical trial educators from Quintiles can help accelerate patient enrollment, improve site performance, and streamline clinical trials. As specialized professionals, they address common barriers like a need for better education, communication, and relationships between sites and sponsors. Educators increase enrollment through training site staff, identifying untapped recruitment pathways, and enrolling previously excluded patients. They have helped increase monthly enrollment by up to 85% in some studies. Educators also facilitate faster site selection and prepare sites for successful early enrollment. Working directly with sites and patients, they provide specialized training, problem-solving support, and patient coaching to improve retention and trial performance.
This document discusses stakeholder involvement in processes conducted by KCE, an independent Belgian health research institution. It outlines key principles for stakeholder involvement, including involving those affected by or able to influence an issue. It also describes KCE's current experience with stakeholder involvement, such as involving its Board and communities. Finally, it proposes strategic objectives like making issues tangible for stakeholders, getting research questions right, and effective communication. It provides an example approach of conducting on-site visits to healthcare providers to understand practical aspects without aiming for representativeness. The document emphasizes openness, transparency, and addressing stakeholder concerns in KCE's research.
Tom Macek, Takeda Global Research and Development - Speaker at the marcus evans Evolution Summit 2012, held in Wheeling, IL, April 30-May 2, 2012, delivered his presentation entitled Site Identification and Patient Recruitment and Retention – A Perfect Union
The document outlines an agenda for a session on introducing the Q-PAC model for patient activation and involvement in quality management. The agenda includes introductions, an overview of patient activation, building patient capacity, patient-centered data reporting, and a panel discussion. The objectives are to introduce patient activation as a method for improving consumer involvement, provide a model for consumer involvement, and discuss a framework for patient data in quality management.
Martina Garau presented on using multi-criteria decision analysis (MCDA) to value orphan medicines. A pilot study developed a value framework with 10 attributes related to disease impact and treatment benefits. Expert and patient workshops then weighted the attributes and applied them to two case studies, finding treatment A more valuable than B. The study demonstrated MCDA's potential to structure complex decisions around orphan drugs in a transparent, replicable manner. Further research is needed to validate attributes and determine a consensus weighting approach for potential cross-country orphan drug valuation.
This document provides information about an upcoming conference on physician revalidation in the UK. It summarizes presentations that will discuss implementing revalidation, doctors' experiences piloting revalidation, and available support for preparing for the first revalidation cycle. Testing of revalidation found the appraisal process takes similar time as before and patients feel the proposed model meets their needs. While progress has been made, some challenges remain regarding locum doctors, SAS doctors, and ensuring all organizations are ready.
Tricks of the Trade: Patient Recruitment & Retention for Different Study TypesImperial CRS
In efforts to raise the bar for medical advancement, clinical trials are growing increasingly complex. This complexity, more often than not, leads to costly delays in enrollment. In this ebook, we'll take a look at 4 case studies for different study types, and examine the unique factors to consider during planning.
Basic Study Recruitment and Regulatory Issues: Which Methods are Appropriate?CTSI at UCSF
Presentation by Laurie Herraiz, RD, CCRP in May 2012 at CHR sponsored workshop on UCSF Campus. Topics include, basics of regulatory and recruitment, iMedrRIS application instructions, waivers of consent/authorization for recruitment purposes, examples of approved recruitment materials, and common challenges to recruitment.
Clinical trial educators from Quintiles can help accelerate patient enrollment, improve site performance, and streamline clinical trials. As specialized professionals, they address common barriers like a need for better education, communication, and relationships between sites and sponsors. Educators increase enrollment through training site staff, identifying untapped recruitment pathways, and enrolling previously excluded patients. They have helped increase monthly enrollment by up to 85% in some studies. Educators also facilitate faster site selection and prepare sites for successful early enrollment. Working directly with sites and patients, they provide specialized training, problem-solving support, and patient coaching to improve retention and trial performance.
This document discusses stakeholder involvement in processes conducted by KCE, an independent Belgian health research institution. It outlines key principles for stakeholder involvement, including involving those affected by or able to influence an issue. It also describes KCE's current experience with stakeholder involvement, such as involving its Board and communities. Finally, it proposes strategic objectives like making issues tangible for stakeholders, getting research questions right, and effective communication. It provides an example approach of conducting on-site visits to healthcare providers to understand practical aspects without aiming for representativeness. The document emphasizes openness, transparency, and addressing stakeholder concerns in KCE's research.
Tom Macek, Takeda Global Research and Development - Speaker at the marcus evans Evolution Summit 2012, held in Wheeling, IL, April 30-May 2, 2012, delivered his presentation entitled Site Identification and Patient Recruitment and Retention – A Perfect Union
The document outlines an agenda for a session on introducing the Q-PAC model for patient activation and involvement in quality management. The agenda includes introductions, an overview of patient activation, building patient capacity, patient-centered data reporting, and a panel discussion. The objectives are to introduce patient activation as a method for improving consumer involvement, provide a model for consumer involvement, and discuss a framework for patient data in quality management.
Martina Garau presented on using multi-criteria decision analysis (MCDA) to value orphan medicines. A pilot study developed a value framework with 10 attributes related to disease impact and treatment benefits. Expert and patient workshops then weighted the attributes and applied them to two case studies, finding treatment A more valuable than B. The study demonstrated MCDA's potential to structure complex decisions around orphan drugs in a transparent, replicable manner. Further research is needed to validate attributes and determine a consensus weighting approach for potential cross-country orphan drug valuation.
This document provides information about an upcoming conference on physician revalidation in the UK. It summarizes presentations that will discuss implementing revalidation, doctors' experiences piloting revalidation, and available support for preparing for the first revalidation cycle. Testing of revalidation found the appraisal process takes similar time as before and patients feel the proposed model meets their needs. While progress has been made, some challenges remain regarding locum doctors, SAS doctors, and ensuring all organizations are ready.
Iu Ahrq Hai Assessment Ctr Presentation Feb 22 2010 FinalBrad Doebbeling
75. Healthcare Associated Infections: Assessment Center Findings , Invited Talk, NCQIP, Agency for Healthcare Research and Quality, Bethesda, MD, February 22, 2010.
This document summarizes a presentation on using multicriteria decision analysis (MCDA) to address ethical dilemmas in healthcare decision making. It discusses how MCDA could support a natural decision process that integrates evidence and values. Specifically, it proposes that MCDA could provide a framework to structure criteria based on the common goal of health and its underlying ethical aspects, allow for interpretation of distinct concepts like effectiveness and costs, and support qualitative reasoning and judgment in decision making. The EVIDEM collaboration aims to develop an open source MCDA framework based on these principles to help make fair and legitimate healthcare decisions.
Multi criteria decision analysis for healthcareSunhong Kwon
Multi-criteria decision analysis (MCDA) is a process used to evaluate multiple criteria in healthcare decision making. Three key aspects of MCDA are summarized:
1. MCDA identifies criteria like clinical benefits, safety, costs, and other factors to evaluate healthcare interventions. Studies consider criteria like disease severity, population affected, clinical guidelines, and costs.
2. Interventions are measured and scored on each criterion using evidence and expert opinion. Scores are often on predefined scales.
3. Criteria weights reflecting importance are generated, commonly using analytic hierarchy process or defined scales. Weights involve multiple stakeholders.
Sensitivity analysis assesses uncertainty, though many studies do not report this. MCD
How to Initiate and Promote Research in Health V1 Imad Hassan
The document discusses how to initiate and promote research in health institutions. It outlines several essential structures needed to start research, including offices, equipment, research committees, personnel, and funding. It also describes important processes like regular training for researchers, department research days, journal clubs, and protected research time. Mechanisms to promote output include research incentives, consultant rotations, multi-center studies, and weekly research meetings. The goal is to establish the proper supports and encourage a culture that drives ongoing research.
Chem 1405 introductory chemistry i determination of density cRAJU852744
This document summarizes the findings of a study that evaluated the impact of conflict management training for pediatric healthcare staff. The training aimed to help staff identify potential conflict triggers, understand patients' perspectives, and implement resolution strategies. Staff reported that the 4-hour course improved their ability to recognize warning signs of escalating conflict and de-escalate tensions, especially around communication issues. Immediate post-training surveys showed staff felt more equipped to handle conflicts, and 6-month follow-up data found the skills were retained over time, with most staff who experienced conflicts applying lessons from the training to successfully resolve the situations. The study demonstrates this training approach can help reduce the costs that unresolved conflicts impose on healthcare systems, staff, and
This document provides an overview and introduction to evidence-based decision making (EBDM) for dental professionals. It defines key terms like evidence-based practice and discusses the need for EBDM to improve patient care and address variations in practice. The document outlines the 5 steps of EBDM and emphasizes that evidence alone is not sufficient, and a hierarchy of evidence exists. It also discusses forming answerable clinical questions as the first step using the PICO framework.
This document summarizes a webinar on improving patient involvement in clinical research activities. It includes presentations from panelists on the benefits of patient involvement from different perspectives. A professor discusses how patient input improved trial design, logistics, and recruitment in past studies. A patient representative talks about their organization's work with industry to fund research and develop a treatment for a rare disease. A pharmaceutical representative discusses challenges and opportunities for patient collaboration in clinical research and development. The webinar aimed to explore how frameworks and guidelines could better enable patient-industry partnerships in research.
This document discusses evidence-based dentistry and randomized controlled trials (RCTs) in orthodontics. It defines evidence-based dentistry as integrating systematic assessments of scientific evidence with clinical expertise and patient preferences. RCTs are described as the gold standard for testing hypotheses as they minimize bias through randomization and blinding. However, RCTs can be challenging to conduct in orthodontics due to long treatment times and variability between patients. Recommendations for improving RCT quality include clearly defining the research question, proper randomization, sufficient sample sizes, and using valid and reliable methods.
1 week 6 assignment ebp change process form ace star model SUKHI5
This document outlines a nursing student's plan to implement a change project to reduce postoperative surgical site infections. Specifically, the student proposes prohibiting artificial nails among clinical staff members. The rationale is that artificial nails harbor pathogens and have been linked to outbreaks of similar infections in surgical patients. The student identifies relevant stakeholders, including nurses, technicians, managers, and administrators. The plan involves educating staff on the new policy, conducting audits to collect infection rate data before and after implementation, and reporting outcomes to stakeholders. If successful, the policy would become permanent. The goal is to improve patient outcomes and safety by reducing opportunities for infection transmission in the operating room.
This document summarizes a presentation about the Patient Centered Outcomes Research Institute (PCORI) and its methods. It discusses how PCORI funds research to help patients make informed healthcare decisions by producing high-quality evidence. Key points include that PCORI research must be patient-centered, compare at least two alternatives, and use outcomes that matter to patients. It also outlines PCORI's research portfolio, methodology standards, and application review process.
Introduction to Evidence Based DentistryRasha Adel
The document discusses evidence-based dentistry (EBD), which involves integrating the best available research evidence with a dentist's expertise and their patient's values and circumstances. It outlines the five steps of EBD: asking a focused question, acquiring evidence by searching databases, appraising the evidence by evaluating its validity and reliability, applying the evidence to patient care, and assessing how effective the process was. It provides details on critically appraising research studies, such as looking for biases, and defines key terms like systematic reviews, meta-analyses, internal and external validity.
This document provides a template for critically appraising an article on diagnosis using evidence-based medicine. It outlines steps for formulating a clinical question, searching for relevant research, selecting an article, summarizing the results, and applying an appraisal scheme to assess the article's relevance, validity, results, and applicability. The template provides guidance on assessing the various components of the article, identifying biases and strengths/weaknesses, and resolving the original clinical question. It aims to guide the reader through an objective, systematic evaluation of a diagnostic research article.
This document provides guidance on developing budgets for industry-sponsored clinical research studies. It outlines key steps like reading the study protocol to identify expenses, determining recruitment needs, categorizing different budget items, and considering various costs. Examples of budget categories and costs that should be included are given, such as start-up fees, staff salaries, data collection, indirect costs, and closing costs. The document advises negotiating with sponsors and building a payment schedule that allows full cost recovery. Overall approval from the institution is required before finalizing any study budget or contract terms.
The document summarizes a qualitative analysis of discussions from a workshop aimed at developing quality indicators for injury care. The analysis identified four key themes in the consensus process: 1) specifying a clear purpose and goals for the indicators, 2) incorporating evidence, expertise, and patient perspectives, 3) considering contextual variations between health centers, and 4) contemplating data collection and management issues. The analysis provides insight into the domains discussed by experts seeking to develop standardized quality measures.
Alexander Baldridge has over 3 years of experience as a Clinical Research Associate and over 5 years of experience in clinical research roles. He currently works as a CRA II at SCRI, where his responsibilities include assisting with investigator selection, developing patient recruitment strategies, performing site monitoring visits, and ensuring compliance. Previously he has held CRA roles at ICON Clinical Research and roles in clinical trial coordination and management. He has experience across multiple therapeutic areas, including oncology trials in lung cancer, leukemia, breast cancer, and molecular profiling.
The purpose of the webinar will be to discuss key differences between quality certifications and certificate programs. To do this, presenters will engage in a discussion surrounding the importance of NCCA accreditation, the differences between a quality certification program vs. assessment-based certificate program, the Health Education Specialist Practice Analysis, and other certification related topics.
Knowledge Translation Tool Dr. I Hassan V14Imad Hassan
This document outlines a 9-step knowledge translation template to address gaps between evidence and practice in healthcare organizations. The template involves: 1) identifying the knowledge-to-action gap; 2) measuring the magnitude of the issue; 3) forming a multidisciplinary team; 4) searching for and appraising evidence; 5) assessing barriers; 6) adapting knowledge to the local context; 7) selecting, tailoring and implementing interventions; 8) monitoring knowledge use and outcomes; and 9) sustaining knowledge use over time. The goal is to standardize care, closely monitor processes, and drive robust quality improvement through applying high reliability organization principles in healthcare settings.
Patient Perspectives on Lay Trial Results SummariesCISCRP Page
This presentation will be presented by Behtash Bahador, CISCRP's Senior Manager of Quality and Compliance at the Disclosure & Transparency for Clinical Data Summit on August 13-14, 2018. To learn more at CISCRP's Lay Summaries visit www.ciscrp.org or contact Jay Matthews at jmatthews@ciscrp.org.
The document provides guidance on structuring impact case studies for Australian National Health and Medical Research Council (NHMRC) grant applications. It discusses the five key elements of impact: 1) knowing your pathway to impact, 2) mapping outputs, outcomes and impacts, 3) using a problem statement, 4) backing statements with evidence, and 5) showing rather than telling. Impact case studies for NHMRC grants should follow a backward pathway structure with three fields addressing the reach and significance of impact, the research program's contribution, and the applicant's role. The document provides examples and tips for writing each field effectively with evidence to support statements about impact.
This document summarizes recommendations from a workshop aimed at improving patient engagement in research. The workshop included 142 representatives from patient and research communities. Participants recommended that research evaluations: 1) pre-define engagement goals by research phase; 2) establish feedback channels for all partners; and 3) assess perceptions of engagement value before and after research. Additional metrics should measure engagement quality and diversity objectively and subjectively. Funding applicants should integrate engagement evaluations, and funding could depend on evaluation results. Incentivizing co-learning and including patient experts could strengthen engagement. Evaluations should link engagement quality to research quality and impact.
Involving patients in research what have we done and how did we do it? Jean R. Slutsky, Patient-Centered Outcomes Research Institute (PCORI) Foredrag, Brukermedvirkning i helseforskning, fra ord til handling. Diakonhjemmet Sykehus 4. november 2014.
Iu Ahrq Hai Assessment Ctr Presentation Feb 22 2010 FinalBrad Doebbeling
75. Healthcare Associated Infections: Assessment Center Findings , Invited Talk, NCQIP, Agency for Healthcare Research and Quality, Bethesda, MD, February 22, 2010.
This document summarizes a presentation on using multicriteria decision analysis (MCDA) to address ethical dilemmas in healthcare decision making. It discusses how MCDA could support a natural decision process that integrates evidence and values. Specifically, it proposes that MCDA could provide a framework to structure criteria based on the common goal of health and its underlying ethical aspects, allow for interpretation of distinct concepts like effectiveness and costs, and support qualitative reasoning and judgment in decision making. The EVIDEM collaboration aims to develop an open source MCDA framework based on these principles to help make fair and legitimate healthcare decisions.
Multi criteria decision analysis for healthcareSunhong Kwon
Multi-criteria decision analysis (MCDA) is a process used to evaluate multiple criteria in healthcare decision making. Three key aspects of MCDA are summarized:
1. MCDA identifies criteria like clinical benefits, safety, costs, and other factors to evaluate healthcare interventions. Studies consider criteria like disease severity, population affected, clinical guidelines, and costs.
2. Interventions are measured and scored on each criterion using evidence and expert opinion. Scores are often on predefined scales.
3. Criteria weights reflecting importance are generated, commonly using analytic hierarchy process or defined scales. Weights involve multiple stakeholders.
Sensitivity analysis assesses uncertainty, though many studies do not report this. MCD
How to Initiate and Promote Research in Health V1 Imad Hassan
The document discusses how to initiate and promote research in health institutions. It outlines several essential structures needed to start research, including offices, equipment, research committees, personnel, and funding. It also describes important processes like regular training for researchers, department research days, journal clubs, and protected research time. Mechanisms to promote output include research incentives, consultant rotations, multi-center studies, and weekly research meetings. The goal is to establish the proper supports and encourage a culture that drives ongoing research.
Chem 1405 introductory chemistry i determination of density cRAJU852744
This document summarizes the findings of a study that evaluated the impact of conflict management training for pediatric healthcare staff. The training aimed to help staff identify potential conflict triggers, understand patients' perspectives, and implement resolution strategies. Staff reported that the 4-hour course improved their ability to recognize warning signs of escalating conflict and de-escalate tensions, especially around communication issues. Immediate post-training surveys showed staff felt more equipped to handle conflicts, and 6-month follow-up data found the skills were retained over time, with most staff who experienced conflicts applying lessons from the training to successfully resolve the situations. The study demonstrates this training approach can help reduce the costs that unresolved conflicts impose on healthcare systems, staff, and
This document provides an overview and introduction to evidence-based decision making (EBDM) for dental professionals. It defines key terms like evidence-based practice and discusses the need for EBDM to improve patient care and address variations in practice. The document outlines the 5 steps of EBDM and emphasizes that evidence alone is not sufficient, and a hierarchy of evidence exists. It also discusses forming answerable clinical questions as the first step using the PICO framework.
This document summarizes a webinar on improving patient involvement in clinical research activities. It includes presentations from panelists on the benefits of patient involvement from different perspectives. A professor discusses how patient input improved trial design, logistics, and recruitment in past studies. A patient representative talks about their organization's work with industry to fund research and develop a treatment for a rare disease. A pharmaceutical representative discusses challenges and opportunities for patient collaboration in clinical research and development. The webinar aimed to explore how frameworks and guidelines could better enable patient-industry partnerships in research.
This document discusses evidence-based dentistry and randomized controlled trials (RCTs) in orthodontics. It defines evidence-based dentistry as integrating systematic assessments of scientific evidence with clinical expertise and patient preferences. RCTs are described as the gold standard for testing hypotheses as they minimize bias through randomization and blinding. However, RCTs can be challenging to conduct in orthodontics due to long treatment times and variability between patients. Recommendations for improving RCT quality include clearly defining the research question, proper randomization, sufficient sample sizes, and using valid and reliable methods.
1 week 6 assignment ebp change process form ace star model SUKHI5
This document outlines a nursing student's plan to implement a change project to reduce postoperative surgical site infections. Specifically, the student proposes prohibiting artificial nails among clinical staff members. The rationale is that artificial nails harbor pathogens and have been linked to outbreaks of similar infections in surgical patients. The student identifies relevant stakeholders, including nurses, technicians, managers, and administrators. The plan involves educating staff on the new policy, conducting audits to collect infection rate data before and after implementation, and reporting outcomes to stakeholders. If successful, the policy would become permanent. The goal is to improve patient outcomes and safety by reducing opportunities for infection transmission in the operating room.
This document summarizes a presentation about the Patient Centered Outcomes Research Institute (PCORI) and its methods. It discusses how PCORI funds research to help patients make informed healthcare decisions by producing high-quality evidence. Key points include that PCORI research must be patient-centered, compare at least two alternatives, and use outcomes that matter to patients. It also outlines PCORI's research portfolio, methodology standards, and application review process.
Introduction to Evidence Based DentistryRasha Adel
The document discusses evidence-based dentistry (EBD), which involves integrating the best available research evidence with a dentist's expertise and their patient's values and circumstances. It outlines the five steps of EBD: asking a focused question, acquiring evidence by searching databases, appraising the evidence by evaluating its validity and reliability, applying the evidence to patient care, and assessing how effective the process was. It provides details on critically appraising research studies, such as looking for biases, and defines key terms like systematic reviews, meta-analyses, internal and external validity.
This document provides a template for critically appraising an article on diagnosis using evidence-based medicine. It outlines steps for formulating a clinical question, searching for relevant research, selecting an article, summarizing the results, and applying an appraisal scheme to assess the article's relevance, validity, results, and applicability. The template provides guidance on assessing the various components of the article, identifying biases and strengths/weaknesses, and resolving the original clinical question. It aims to guide the reader through an objective, systematic evaluation of a diagnostic research article.
This document provides guidance on developing budgets for industry-sponsored clinical research studies. It outlines key steps like reading the study protocol to identify expenses, determining recruitment needs, categorizing different budget items, and considering various costs. Examples of budget categories and costs that should be included are given, such as start-up fees, staff salaries, data collection, indirect costs, and closing costs. The document advises negotiating with sponsors and building a payment schedule that allows full cost recovery. Overall approval from the institution is required before finalizing any study budget or contract terms.
The document summarizes a qualitative analysis of discussions from a workshop aimed at developing quality indicators for injury care. The analysis identified four key themes in the consensus process: 1) specifying a clear purpose and goals for the indicators, 2) incorporating evidence, expertise, and patient perspectives, 3) considering contextual variations between health centers, and 4) contemplating data collection and management issues. The analysis provides insight into the domains discussed by experts seeking to develop standardized quality measures.
Alexander Baldridge has over 3 years of experience as a Clinical Research Associate and over 5 years of experience in clinical research roles. He currently works as a CRA II at SCRI, where his responsibilities include assisting with investigator selection, developing patient recruitment strategies, performing site monitoring visits, and ensuring compliance. Previously he has held CRA roles at ICON Clinical Research and roles in clinical trial coordination and management. He has experience across multiple therapeutic areas, including oncology trials in lung cancer, leukemia, breast cancer, and molecular profiling.
The purpose of the webinar will be to discuss key differences between quality certifications and certificate programs. To do this, presenters will engage in a discussion surrounding the importance of NCCA accreditation, the differences between a quality certification program vs. assessment-based certificate program, the Health Education Specialist Practice Analysis, and other certification related topics.
Knowledge Translation Tool Dr. I Hassan V14Imad Hassan
This document outlines a 9-step knowledge translation template to address gaps between evidence and practice in healthcare organizations. The template involves: 1) identifying the knowledge-to-action gap; 2) measuring the magnitude of the issue; 3) forming a multidisciplinary team; 4) searching for and appraising evidence; 5) assessing barriers; 6) adapting knowledge to the local context; 7) selecting, tailoring and implementing interventions; 8) monitoring knowledge use and outcomes; and 9) sustaining knowledge use over time. The goal is to standardize care, closely monitor processes, and drive robust quality improvement through applying high reliability organization principles in healthcare settings.
Patient Perspectives on Lay Trial Results SummariesCISCRP Page
This presentation will be presented by Behtash Bahador, CISCRP's Senior Manager of Quality and Compliance at the Disclosure & Transparency for Clinical Data Summit on August 13-14, 2018. To learn more at CISCRP's Lay Summaries visit www.ciscrp.org or contact Jay Matthews at jmatthews@ciscrp.org.
The document provides guidance on structuring impact case studies for Australian National Health and Medical Research Council (NHMRC) grant applications. It discusses the five key elements of impact: 1) knowing your pathway to impact, 2) mapping outputs, outcomes and impacts, 3) using a problem statement, 4) backing statements with evidence, and 5) showing rather than telling. Impact case studies for NHMRC grants should follow a backward pathway structure with three fields addressing the reach and significance of impact, the research program's contribution, and the applicant's role. The document provides examples and tips for writing each field effectively with evidence to support statements about impact.
This document summarizes recommendations from a workshop aimed at improving patient engagement in research. The workshop included 142 representatives from patient and research communities. Participants recommended that research evaluations: 1) pre-define engagement goals by research phase; 2) establish feedback channels for all partners; and 3) assess perceptions of engagement value before and after research. Additional metrics should measure engagement quality and diversity objectively and subjectively. Funding applicants should integrate engagement evaluations, and funding could depend on evaluation results. Incentivizing co-learning and including patient experts could strengthen engagement. Evaluations should link engagement quality to research quality and impact.
Involving patients in research what have we done and how did we do it? Jean R. Slutsky, Patient-Centered Outcomes Research Institute (PCORI) Foredrag, Brukermedvirkning i helseforskning, fra ord til handling. Diakonhjemmet Sykehus 4. november 2014.
This session—delivered on March 1, 2024—aims to provide prospective applicants useful information about the Preparing for Research by Engaging Public and Patient Partners (PREPPP) Awards.
Topics include eligibility and assessment criteria, overall quality, and information about the Dr. Wattamon Srisakuldee Memorial PREPPP Award.
This document provides an overview and instructions for submitting a Letter of Intent (LOI) for the August 2013 cycle of funding announcements from the Patient-Centered Outcomes Research Institute (PCORI). It introduces PCORI's mission and funding areas, describes the Improving Methods for Conducting Patient-Centered Outcomes Research funding announcement, outlines the LOI submission process and requirements, and provides resources and dates for applicants. Representatives from PCORI are present to answer any questions about the LOI or application process.
This presentation features key information about CHI's Preparing for Research by Engaging Public & Patient Partners (PREPPP) Award including eligibility criteria, key dates, and application package information.
Perspectives on Research Funding: the why, what and how of commissioning exce...The Impact Initiative
The document provides an overview of the research commissioning process from the perspectives of multiple stakeholders.
It discusses the key elements of a successful research proposal, including clearly demonstrating how the proposed research addresses the specific call, advances existing knowledge, and is methodologically rigorous. It emphasizes the importance of assembling the right team and planning the project realistically.
The pathways to impact section is identified as an opportunity to show non-academic users have been considered. Key recommendations include identifying actual and potential users, securing support from partners, and outlining pragmatic engagement and communication tools. Coherence and evidence of involvement from named organizations is important.
The document provides an overview of the Agency for Healthcare Research and Quality's (AHRQ) Effective Health Care Program. It describes the program's goals of conducting comparative effectiveness research to inform healthcare decisions. It outlines the key players and their roles, including Evidence-based Practice Centers that conduct evidence syntheses, stakeholders that provide input, and dissemination of findings to patients and policymakers.
If you're a researcher interested in Cancer Council NSW grant funding, this presentation will guide you through the application process, as well as how and why we ask you to get consumers involved.
Consortium metrics discussion with IOM Drug ForumMark David Lim
Presentation made to the IOM Forum on Drug Discovery, Development, and Translation to explore the possibility of metrics that evaluate the performance of biomedical research consortia
The document provides guidance on best practices for evaluation, impact, and sustainability of student partnership projects. It recommends identifying the rationale and need for evaluation upfront, choosing appropriate qualitative and quantitative evaluation approaches, adopting a range of data collection techniques, identifying impact on stakeholders and the institution, developing case studies for communications, and developing recommendations to support sustaining student partnerships as part of the evaluation process.
HIT Use in Primary Care Practices: Understanding and Eliminating Disparity UCLA CTSI
UCLA CTSI and University of Minnesota Cross-Institutional Award Projects
Principal Investigators: Hector Rodriguez (UCLA) and William Riley (University of Minnesota)
Large-scale federal investments in health information technology (HIT) are intended to spur health care providers and organizations to share patient information to better coordinate and improve quality of care. However, the uptake of HIT has lagged in ambulatory care settings that care for high proportions of low-income patients. Our pilot study seeks to generate knowledge about facilitators and barriers to the spread of electronic health information exchange (HIE) for improving quality of care among underserved populations. We have established partnerships with two health care organizations: Citrus Valley Health Partners (CVHP), a provider network serving many underserved patients in the East San Gabriel Valley, Calf., and the Federally Qualified Health Center Urban Health Network (FUHN), a group of ten clinic organizations serving the Minneapolis-St. Paul area. We are conducting key informant interviews of physicians, front office staff, IT personnel, and executives. Through these interviews, we are learning about the barriers to electronic exchange of health information within the clinics and practices, between these sites, and at city-wide or regional levels. This multi-level framework elucidates the opportunities and challenges for ambulatory care practices serving underserved populations in adopting and sustaining HIT.
The document provides information about the launch of the Eugene Washington PCORI Engagement Awards Program. It summarizes the three areas of funding opportunities - Knowledge Awards, Training and Development Awards, and Dissemination and Implementation Awards. Eligible applicants can apply through an online system. The review process considers criteria such as program fit, project plan and timeline, qualifications, personnel, past performance, and budget. Questions from webinar participants would be answered.
Quality improvement across our healthcare system - Mirek Skrypak.pptxlibrary66
This document discusses quality improvement in healthcare. It defines quality improvement as giving staff the skills and resources to solve issues affecting care quality. It outlines Donabedian's structure-process-outcome model for quality improvement and describes how the organization will use clinical audits and the model for improvement to engage staff. The document proposes a strategy for training staff in quality improvement over the next 3 years and establishes partnerships and an evaluation plan to support continuous quality improvement across the system.
This presentation was made at a large pharmaceutical company's R&D and corporate affairs campus - going a little more indepth than the one from the prior Science of Team Science Conference
Highlights from ExL Pharma's 4th Latin America Clinical TrialsExL Pharma
This document summarizes presentations from ExLPharma's 4th Latin America Clinical Trials conference. It discusses topics like IRB collaboration between institutions, using microfinance organizations' infrastructure to aid in clinical trial recruitment and retention, ensuring quality in clinical research, and considerations for outsourcing clinical research functions. Key aspects covered include developing countries' IRB competencies, challenges and benefits of the clinical trial-microfinance partnership model, importance of quality oversight and planning, and factors to consider for outsourcing research and development activities.
Grant Proposals (SF 424): K08-K23 Applications and Individual CDAsUCLA CTSI
UCLA CTSI K Workshop - February 4, 2016
Isidro B. Salusky, MD
Distinguished Professor of Pediatrics at UCLA Chief, Division of Pediatric Nephrology
Director, Clinical Translational Research Center
Associate Dean of Clinical Research
Considering applying for CHI's Preparing for Research by Engaging Patient and Public Partners (PREPPP) Award? Check out this slide deck of tips & suggestions for your application.
More info at www.chimb.ca/preppp
The document presents an engagement cycle as a conceptual framework for patient and public engagement (PPE) in healthcare commissioning. The cycle outlines key PPE activities that should occur at each stage of the commissioning process, including engaging communities to identify health needs, engaging the public in priority-setting and strategic decisions, engaging patients in service design and improvement, patient-centered procurement and contracting, and patient-centered monitoring and performance management. It provides the rationale and benefits for each activity, and suggestions for how they can be implemented to meaningfully involve patients and the public throughout commissioning.
Similar to DII - A Patient Engagement Workbook for Research Teams (20)
What Next: When You are not Funded on the First Round - 2023UCLA CTSI
CTSI R Workshop: What Next: When You are not Funded on the First Round.
Scott G. Filler, MD
Professor of Medicine at Lundquist Institute/Harbor-UCLA and UCLA
Leader, CTSI Pilot Translational and Clinical Studies Program
Co-Leader, CTSI KL2 Institutional Development Core
How to Write the “Specific Aims” Section - 2023UCLA CTSI
CTSI R Workshop: How to Write the “Specific Aims” Section of a Grant Application.
Tannaz Moin, MD, MBA, MSHS
Associate Professor of Medicine at UCLA
AssociateDirector, UCLA Specialty Training and Advanced Research (STAR) Program
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DII - A Patient Engagement Workbook for Research Teams
1. Creating a Patient Engagement Workbook
for Research Teams
SARAH MADRID
CO-CHAIR, HCSRN PATIENT ENGAGEMENT IN RESEARCH SIG
INSTITUTE FOR HEALTH RESEARCH, KAISER PERMANENTE OF COLORADO
DISSEMINATION, IMPLEMENTATION & IMPROVEMENT SCIENCE WEBINAR SERI ES:
AUGUST 2, 2017
2. o Scientific Interest Group since 2014
• Today: 117 members representing 13 HMORN member organizations, the VA,
PCORI, and other academic research institutions
o Mission of the SIG:
Improve the HCSRN’s capacity to meaningfully engage patients as members of
research teams to increase the value and applicability of research findings for
patients, and to enable them to make informed healthcare decisions and achieve
better health outcomes.
[HCSRN: Healthcare Services Research Network]
3. o Develop a community of engagement practice among HMORN researchers,
patients and other stakeholders
o Conduct baseline and follow up assessments of engagement resources
available in member organizations
o Consult on building engagement infrastructure within member organizations
o Consult on planning for and implementing patient engagement in all phases of
research
o Recruit patient partners as members of the SIG
o Identify best practices for measuring the engagement of patient partners
4. Purposes of Survey:
1. Elicit engagement practices of HMORN research teams
2. Identify best practices in engagement
3. Develop a tool for research teams
5. o Roles and Stages of Engagement
o Identification/Recruitment/ Screening
o IRB Oversight
o Organizational Support
o Compensation/Contracting/Hiring
o Training – Patient Partners and
Research Team
o Data Sharing
o Feedback and Evaluation/Retention
Results of survey used to create a
user’s manual for researchers
preparing to engage patients in
research.
6. As a basis for customization to individual research teams or
research shops
Examples:
o include organization-specific templates for contracting or hiring
o add decision flows for determining appropriate compliance
trainings depending on intensity or duration of engagement
o incorporate organizational standards for compensation
7. I. Why Engage Patient Partners on
This Study?
OUTCOME: Reasons for engagement are clearly articulated
Justify the need for engaging
patients on the research team: Notes:
Is engagement required for the
study proposal?
How will the patient perspective
enhance the study?
At what stages of the research
process will patients be engaged?
How much will it cost to engage
patients on the study? (see following
slides)
Do the benefits of engagement
outweigh the costs?
8. Estimating Costs of Engagement:
How much time will it take to:
Identify and recruit patient
partner(s)
Train patient partner(s) and
research team
Consult with IRB/Compliance
Consult with HR, IT, Sponsored
Projects, or Member Relations
Evaluate the impacts of engagement
on project and research team
Other
9. Estimating Costs of Engagement (cont.):
Consider costs of: Notes:
Compensating patient partner(s)
Reimbursing partner(s)’ expenses
(transport, parking, mileage, etc)
Travel for patient partner(s) to
conference(s) to present study
findings
Other
10. II. Define the role(s) of patient partner(s)
on the team:
Outcome: Clear role statement(s) for patient partner(s)
Roles #
Stage(s) of
Research Define the roles and list the responsibilities
Investigator/Co-
Investigator
Consultant
Advisory panel member
Focus group member
Research staff: who will have primary responsibility for communicating with patient partner(s)?
11. III. Engagement Logistics
OUTCOME: Logistics are thought through; preparations begun
For each patient partner to be engaged, answer the following:
How often will s/he be needed and for
how long?
When will s/he be needed?
Where will s/he need to go?
How many weeks/months/years will
s/he be needed?
How much will s/he be compensated?
In person or virtual participation?
What kind of contract(s) will be needed?
12. Compensation Considerations
List any limitations or compensation
restrictions
NB: Compensation should be proportional to the role(s)
played by the patient partner(s)
Organizational restrictions?
Budget limitations?
Equity with other team members?
Other?
13. Compensation Considerations (cont.)
Context? Contracting?
• Adopt compensation rates used
in other studies – adequate?
• Any relevant organizational
requirements?
• Use the government consultant
rate? (recommended by PCORI)
• Volunteer basis (not recommended)?
• Will you reimburse participant
travel? (recommended by
PCORI)
• Consulting/service agreement?
• Confidentiality issues?
14. IV. Identification & Recruitment of Patient
Partners
OUTCOME: Clear description of patient partner you want to target
Define any inclusion or exclusion criteria for recruiting patients to the team
according to the specific needs of the study:
Disease burden/ health
condition/ experience?
Particular demographic
or other
characteristic(s)?
Other inclusion or
exclusion criteria?
15. V. Recruitment: assess options and needs of study
OUTCOME: Recruitment strategy(ies) that best fits study needs
Options: Options:
Existing patient panels or patient
support groups
Social media
Referrals from clinicians/providers Internal patient registry
Health system broadcast
communications to members
Online “matching” registry
Flyers in clinics Flyers at disease specific
fundraisers/community events
Referrals from/network with community
organizations
Local media advertising
16. VI. IRB/Compliance
OUTCOME: Clear guidelines to meet any IRB oversight requirements, or to
receive formalized exemption
Review recruitment and engagement plans with
IRB: Notes:
Does IRB require oversight or review of patient
engagement?
What documentation is required by IRB for patient
partners on your research team?
Are you accessing PHI in your identification or
recruitment processes?
What are the potential risks – and benefits - to the
patient(s) in joining the research team?
17. Focus Group
Stakeholder Advisory
Panel
SCOPE OF WORK?
Research Team Collaborator:
- data collection
- instrument development
- community gatekeeper
- data analysis review and/or
interpretation
- dissemination activities
- research question generation
-conference attendance and/
or presentation
- manuscript development/
report writing
FREQUENCY of
PARTICIPATION?
One Time Episodic On-going Intense On-going
Gift card
Confidentiality
agreement if needed
MoU or 1 Day Service
Agreement
Stipend or Gift card
Independent
Contractor Service
Agreement [ICSA]
Stipend
COMPENSATION?
C o n t i n u u m o f E n g a g e m e n t
INPUT? DATA
Advice/Opinion/
Guidance/Perspective
USE of INPUT?
Conduct Research
I.e., analyze, publish
data
Design, Interpretation
and Improvement of
Processes
18. VII. Other Departments
OUTCOME: Organizational approvals in hand, and cooperation in preparing
for patient partners
Review the implications of your recruitment and engagement plans with:
Sponsored Projects office
Human Resources
IT
Governance or Member
Relations
19. VIII. Prepare to Screen Promising Candidates
Note: Characteristics of the ideal candidate(s) will depend on specifics of
your study. Over-recruit to accommodate attrition during screening.
OUTCOME: Prepared to select best candidate(s) for positions
Select screening method(s):
Personal interviews (phone or in-
person)
Survey or questionnaire administered
remotely
Previous participation on a study
Prepare screening questions:
20. IX. Screening Practices (1/2)
Guidelines to Avoid Bias: Comments:
Patient(s) shows ease expressing self,
including when opposing views are aired
No apparent desire for a platform to
communicate dissatisfaction
Previous experience in a similar capacity
(e.g., in a school, faith community, etc.)
Isn’t already “savvy” about negotiating the
health system (depends on role(s) – not
necessarily a disadvantage)
Is the study topic controversial? If so, determine whether patient holds extreme views for or
against the topic. If so, how will that affect her/his participation?
21. Screening Practices (2/2)
Communicate Logistics:
Role on study
Expectations for
participation
Study timeline
Time requirements
Compensation
Training
Ground rules
Answer patient(s)’ questions; give her/him time to consider participation.
OUTCOME: confirmed patient partner(s) who understand all aspects and
expectations of participation.
22. X. Research Team Training
OUTCOME: research team is prepared to work respectfully and effectively
with patient partners.
Train current research team members in preparation for working with patient team members
Review goals of engagement and role
requirements for patient(s)
Clarify expectations for patient(s)
engagement
Review any institutional restrictions
(e.g., on information sharing)
Emphasize the rules of engagement;
the patient(s)’ expertise is her/his
experience as a patient
23. 6 Meta-Criteria
for successful
engagement:
1. TRUST
2. RESPECT
3. ACCOUNTABILITY
4. LEGITIMACY
5. FAIRNESS
6. COMPETENCE
Lavallee DC et al., “Stakeholder
engagement in CER: how will we measure
success?” JCER, 1(5), 1-11 (2012)
24. XI. Formalize
OUTCOME: patient partner(s) is assured that her/his participation is official,
and integration into research team is initiated.
Complete on-boarding formalities with patient partner(s):
Collect information for initiating the
compensation mechanism
Execute any contractual mechanism(s),
including confidentiality agreements
Provide organizational employee information
as needed, including email address and
password(s)
Establish data sharing protocols
25. XII. Train Patient Partner(s)
OUTCOME: Patient partner(s) can be fully engaged in the study, feel useful
and valued, and share her/his expertise willingly
Conduct as needed for your particular study:
IRB/HIPAA/Human Subject training
Health plan or organizational information; required health system training(s)
Develop ground rules for participation, including grounds for termination
Specifics of study; context, background, design, etc.
Specific role(s) on the study and responsibilities for both research staff and patient partner(s)
Timeline and logistics of participation: when, where, how long, how often
Value of patient(s)’ perspective, importance of speaking up, especially in disagreement or when
unclear on an aspect of the study
Training materials: glossary, acronym list, study abstract (if available), other
Organizational policies (dress code, etc.)
26. Retention of Patient Partner(s)
Honesty, Transparency, and Respect
Communication = the key to retention
Establish and maintain close relationships with the patient partner(s)
Send regular updates on project progress unless patient partner(s) attends frequent,
regular meetings with the rest of the research team
Ask patient partner(s) what you can do for them to enhance the benefits to them of
participation.
Maintain good partner relationships throughout lifetime of study, from pre-proposal
through closeout and beyond.
Hold team buildings to enhance communication and relationships among all team
members (FOOD helps!)
27. XIII. Monitoring and Evaluation
OUTCOME: Patient partner(s) feels heard and respected as valued study team member(s)
Schedule a regular opportunity for patient partner(s) to provide feedback on their
experiences.
Should be a “safe” space for truthful feedback
Establish clear ground rules for facilitated group discussions
Online or written evaluation
Provide feedback to patient partner(s) on her/his participation
Respond to patient partner concerns or issues
End the patient partner’s participation if necessary
At the final evaluation, ask patient(s)’ preferences for being contacted again in the future
for information updates or possible participation in other studies
28. Assessing Impact of Patient Engagement in Research: effects on the research process
COREComponentsby
ResearchStage
Overarching
Principles(common
toALLstages)
DesiredOutcomesby
ResearchStage
IMPACTFLOW
Stage 1:
developing the
research
question
- measurable
Stage 2:
developing the
research proposal
- Balance of
scientific rigor and
incorporation of
partner
suggestions
Stage 3:
administrative
pre-launch
- shared
responsibilities
Stage 4: recruitment and
data collection
- methods implemented
with integrity
-adaptability
- meet pts where they are
- ensure truly “informed”
consent
Stage 5: data
analysis
- timeliness
- examine real world
implications
Stage 6: dissemination
and implementation:
Diverse methods used;
timely dissemination,
translation and
adoption; Legitimacy of
results; relationships
with partners sustained
Question
reflects, is
relevant,
meaningful and
impactful to the
community and
its stakeholders,
and is
understood by
all
Scientific rigor,
including plans
for data sharing,
dissemination &
implementation
, and
assessment of
impact
Appropriate
training; shared
responsibility for
ethics/protections;
shared development
of IRB, HR, training,
and budget;
transparent consent
forms/language
Anticipates participant issues;
methods are feasible for
participants and respect
diversity; Clear, engaging,
transparent materials,
messaging, methods for
recruitment that foster fair,
ethical, and informed consent;
tailored incentives; unbiased
methods ensure diverse
sampling
Share data and
information iteratively
with partners;
incorporate partner
interpretations on data,
solicit potential
community stigmas;
community relevance;
protect/respect
community
Timely, far-reaching messaging
done thru multiple channels;
process AND results
disseminated; translated/
adopted appropriately;
sustained partner relationships;
partners as advocates/
champions; no undue
evaluation burden on partners
Patient Centeredness – reflects/respects patient needs, preferences, experiences
Plain Language – all information is accessible to all partners
“Teamness” - shared responsibility for study; partner insights validated/incorporated
Check assumptions: researchers and partners
Outcomes have meaning/value to partners and community
Capacity Building – partners gain skills and knowledge through experience and/or training
Relevant
question
Improved study
design
Relevant
proposal
More effective
methods
Better and
sustained
recruitment
Higher quality
data
Improved data
interpretation
More legitimate
results
Higher chance of
translation/adoption
Results communicated
more broadly/
effectively
Improved clinical
practice and health
outcomes
29. XIV. Closure: End of Study
OUTCOME: Opportunity for all team members to reflect on value of study
and relationships developed
Sun-setting suggestions:
Share study results if patient partner(s) hasn’t been involved in later stages of study
Make a formal expression of gratitude for patient partner(s)’ contributions, e.g.,
provide a certificate of participation for patient partner(s)
Hold a team gathering to debrief on successes/challenges, and to celebrate a job well
done
Ask partner to provide a summary of her/his experience, including high and low
points, motivation for participating, and value of it personally and for the research.
30. Acknowledgements:
• Ellis Dillon, Leah Tuzzio: co-chairs of the HCSRN Patient Engagement in Research
Scientific Interest Group (PER SIG)
• PER SIG membership (to join this listserv, contact Sarah.Madrid@kp.org)
• Note: Flow diagram on p.17 is a product of collaboration with Borsika Rabin.
• Note: Flow diagram on p.28 is a product of the HCSRN Impact Assessment
Workshop, Oct. 26-28, 2016. We thank Ellis Dillon, Bob Greenlee, Jacquetta
Hinton, Deb Multerer, Gina Napolitano, Heather Olden, Mary Schramke, Ursula
Salas, Leah Tuzzio, and Neely Williams for their collaboration on the workshop
and the flow diagram.
31. Sarah Madrid
Sr. Project Manager, Institute for Health Research,
Kaiser Permanente of Colorado
Sarah.Madrid@kp.org
303-614-1358 (T)
http://www.hmoresearchnetwork.org/en/Tools%20&%20Materials/
Plan_Field/HMORNPatientEngagementWorkbook.pdf