Dr. James A. Talcott is a nationally recognized medical oncologist and outcomes researcher who has held positions at several major cancer centers, including currently serving as Director of the Center for Health Care Quality and Outcomes Research at Mount Sinai Beth Israel-Mount Sinai West Integrated Cancer Network Programs in New York. He has over 25 years of experience in clinical research and has published over 60 research publications focused on patient outcomes, genitourinary cancers, and quality of cancer care. Dr. Talcott also has a strong background in teaching clinical research methodology and has trained many oncology leaders and fellows.
RoRI Research Funding Landscapes explores how to prioritize research agendas and align priorities with societal needs through the distribution of funding over diseases and research fields. The document outlines challenges in priority setting for health research funding and distribution over different diseases and research areas for a given disease. It introduces a demonstration project using scientometric data and tools combined with expert knowledge on priority setting as a first step toward a RoRI research program on improving methods for research priority setting.
An Overview of the Grant Programs Offered by the JWCFStephen Reeder
Stephen Reeder is an experienced real estate executive based in Redlands, California. The chief executive officer of The UCR Group, Stephen Reeder supports charitable organizations such as the John Wayne Cancer Foundation (JWCF)
Founded in memory of John Wayne, who beat lung cancer in 1964, the John Wayne Cancer Foundation is a charitable organization that funds innovative programs and research that improve the treatment of cancer and save lives through education, support, and awareness. As part of this work, JWCF funds three grants that advance cancer research initiatives.
First, the John Wayne Alumni Fellows is a grant program that benefits medical professionals who have completed the John Wayne Surgical Oncology program. It provides alumni fellows with adequate funding to perform clinical research in surgical oncology. The most recent grantees include Mark Faries, MD, David Ollila, MD, and Juan Santamaria.
The second grant program is the Funded Cancer Research program. This program allows the JWCF to fund the John Wayne Clinical Research Lecture at the Society for Surgical Oncology International Conference. The most recent speaker, Jatin P. Shah, MD, presented a talk titled New Avenues to Uplift Global Quality of Care in Surgical Oncology.
Finally, the John Wayne Cancer Foundation provides educational funding for The John Wayne Critical Issues in Breast Cancer Forum: Special Considerations in Breast Cancer.
Www.healthtalkonline.org a resource for patients, nice and commissioningMerlien Institute
Health Talk Online is a website featuring over 60 collections of qualitative interviews about various health conditions and experiences. The interviews are conducted using narrative methods with diverse patients throughout the UK. Over 3,000 video and audio clips have been extracted from the interviews. The site is a resource for patients, caregivers, health professionals, and those developing healthcare policy and quality standards. Researchers at the University of Oxford conduct the interviews and analyze them to identify key themes. The full interview collections are also available for secondary analysis by other researchers and to inform healthcare improvement initiatives.
The OHSU Knight Cancer Institute and Doernbecher Children's Hospital are accepting applications for the $10,000 Umpqua Bank Innovation Award for Pediatric Cancer Research. The award aims to fund preliminary research that will lead to national grants or career development proposals to improve cancer therapy, diagnosis, or prevention. Eligible applicants are faculty within five years of their first appointment or senior fellows/post-docs transitioning to independent research. Proposals are due August 29th and will be reviewed with funding decisions by September 15th. Applications should be submitted through the OHSU limited submission process.
The Miller-Coulson Academy of Clinical Excellence at Johns Hopkins Bayview Me...ABIM Foundation
The document outlines the rationale and goals for establishing the Miller-Coulson Academy of Clinical Excellence at Johns Hopkins Bayview Medical Center. The Academy aims to recognize clinicians who excel in patient care, advocate for academic clinicians, generate new knowledge in clinical practice, and measure clinical performance. Membership is determined by a clinical portfolio evaluating factors like productivity, quality improvement initiatives, and input from referees. The Academy will host educational programs and research to model excellence in patient care and influence institutional culture. It defines excellence as mastery in areas like communication, professionalism, and scholarly clinical practice. The rigorous selection process and committed members have gained leadership support for the new Academy.
This document discusses making biobank data and samples FAIR (Findable, Accessible, Interoperable, and Reusable).
It explains the four FAIR principles and provides examples of how to apply each one. To make resources findable, they need unique and persistent identifiers, rich metadata, and to be discoverable through other systems. To make them accessible, they need to be retrievable using open standards. To make them interoperable, standards for knowledge representation like ontologies should be used. And to make them reusable, they need to be richly described and released with clear usage terms and provenance.
The document recommends three steps to make samples and data FAIR: include sufficient metadata using
Dr. James A. Talcott is a nationally recognized medical oncologist and outcomes researcher who has held positions at several major cancer centers, including currently serving as Director of the Center for Health Care Quality and Outcomes Research at Mount Sinai Beth Israel-Mount Sinai West Integrated Cancer Network Programs in New York. He has over 25 years of experience in clinical research and has published over 60 research publications focused on patient outcomes, genitourinary cancers, and quality of cancer care. Dr. Talcott also has a strong background in teaching clinical research methodology and has trained many oncology leaders and fellows.
RoRI Research Funding Landscapes explores how to prioritize research agendas and align priorities with societal needs through the distribution of funding over diseases and research fields. The document outlines challenges in priority setting for health research funding and distribution over different diseases and research areas for a given disease. It introduces a demonstration project using scientometric data and tools combined with expert knowledge on priority setting as a first step toward a RoRI research program on improving methods for research priority setting.
An Overview of the Grant Programs Offered by the JWCFStephen Reeder
Stephen Reeder is an experienced real estate executive based in Redlands, California. The chief executive officer of The UCR Group, Stephen Reeder supports charitable organizations such as the John Wayne Cancer Foundation (JWCF)
Founded in memory of John Wayne, who beat lung cancer in 1964, the John Wayne Cancer Foundation is a charitable organization that funds innovative programs and research that improve the treatment of cancer and save lives through education, support, and awareness. As part of this work, JWCF funds three grants that advance cancer research initiatives.
First, the John Wayne Alumni Fellows is a grant program that benefits medical professionals who have completed the John Wayne Surgical Oncology program. It provides alumni fellows with adequate funding to perform clinical research in surgical oncology. The most recent grantees include Mark Faries, MD, David Ollila, MD, and Juan Santamaria.
The second grant program is the Funded Cancer Research program. This program allows the JWCF to fund the John Wayne Clinical Research Lecture at the Society for Surgical Oncology International Conference. The most recent speaker, Jatin P. Shah, MD, presented a talk titled New Avenues to Uplift Global Quality of Care in Surgical Oncology.
Finally, the John Wayne Cancer Foundation provides educational funding for The John Wayne Critical Issues in Breast Cancer Forum: Special Considerations in Breast Cancer.
Www.healthtalkonline.org a resource for patients, nice and commissioningMerlien Institute
Health Talk Online is a website featuring over 60 collections of qualitative interviews about various health conditions and experiences. The interviews are conducted using narrative methods with diverse patients throughout the UK. Over 3,000 video and audio clips have been extracted from the interviews. The site is a resource for patients, caregivers, health professionals, and those developing healthcare policy and quality standards. Researchers at the University of Oxford conduct the interviews and analyze them to identify key themes. The full interview collections are also available for secondary analysis by other researchers and to inform healthcare improvement initiatives.
The OHSU Knight Cancer Institute and Doernbecher Children's Hospital are accepting applications for the $10,000 Umpqua Bank Innovation Award for Pediatric Cancer Research. The award aims to fund preliminary research that will lead to national grants or career development proposals to improve cancer therapy, diagnosis, or prevention. Eligible applicants are faculty within five years of their first appointment or senior fellows/post-docs transitioning to independent research. Proposals are due August 29th and will be reviewed with funding decisions by September 15th. Applications should be submitted through the OHSU limited submission process.
The Miller-Coulson Academy of Clinical Excellence at Johns Hopkins Bayview Me...ABIM Foundation
The document outlines the rationale and goals for establishing the Miller-Coulson Academy of Clinical Excellence at Johns Hopkins Bayview Medical Center. The Academy aims to recognize clinicians who excel in patient care, advocate for academic clinicians, generate new knowledge in clinical practice, and measure clinical performance. Membership is determined by a clinical portfolio evaluating factors like productivity, quality improvement initiatives, and input from referees. The Academy will host educational programs and research to model excellence in patient care and influence institutional culture. It defines excellence as mastery in areas like communication, professionalism, and scholarly clinical practice. The rigorous selection process and committed members have gained leadership support for the new Academy.
This document discusses making biobank data and samples FAIR (Findable, Accessible, Interoperable, and Reusable).
It explains the four FAIR principles and provides examples of how to apply each one. To make resources findable, they need unique and persistent identifiers, rich metadata, and to be discoverable through other systems. To make them accessible, they need to be retrievable using open standards. To make them interoperable, standards for knowledge representation like ontologies should be used. And to make them reusable, they need to be richly described and released with clear usage terms and provenance.
The document recommends three steps to make samples and data FAIR: include sufficient metadata using
Health Datapalooza IV: June 3rd-4th, 2013
Action Beats and Announcements
Patient-Centered Outcomes Research Institute (PCORI) Challenge Winners
PCORI challenged teams to develop a proposal or prototype for a patient/researcher ‘matching’ mechanism or system that can effectively connect potential partners interested in seeking funding for rigorous patient-centered outcomes research. Two winners will be announced.
Presenter: Anne Beal, Chief Operating Officer, Patient-Centered Outcomes Research Institute (PCORI)
The Clinical and Molecular Epidemiology Shared Resource (CMESR) provides services including the collection, processing, and storage of biological samples and clinical data from various cancer patient populations. It assists with IRB protocols, questionnaire data entry and analysis, and sample and data requests for cancer research. The CMESR is located at the Lombardi Cancer Center and houses samples and data on prostate, head and neck, colon, lung, and breast cancers.
The document discusses issues related to building sustainable biobanks. It outlines key factors for biobanks including having a clear purpose that determines their potential for generating knowledge, obtaining sufficient funding, and having a mandate and governance structure. It also stresses the importance of measuring success not just by the number of samples collected but by whether the biobank has accelerated research and discovery. The document uses the example of the Tumour Bank at the Children's Hospital at Westmead, which has supported over 90 projects, contributed samples to studies worldwide, and resulted in numerous publications despite being a small single-institution biobank.
An analysis of patient diversity in oncology clinical trials found that women and minorities are underrepresented compared to their proportions in cancer incidence rates and the general population. The study analyzed data from 2002-2012 on five cancer types and found that women were underrepresented in lung cancer trials, and that black, Asian/Pacific Islander, and American Indian patients had lower odds of enrollment compared to their white counterparts. The results indicate a need for more inclusive trial recruitment practices to improve generalizability and alleviate health disparities.
Patient and doc engagement online westH. Jack West
The document discusses how the relationship between doctors and patients is changing from a unidirectional model to a bidirectional model due to the increasing amount of medical information available online. It notes that the rate of new medical information has more than doubled in the last 20 years, making it impossible for doctors to know everything. As a result, patients are increasingly informed and motivated to help themselves by seeking information from social networks and online resources. This is shifting the interaction between doctors and patients to a more collaborative bidirectional model where physicians are no longer expected to have all the answers and patients play a more active role in their own care.
Thyroid cancer rates are increasing rapidly in Canada. While survival rates are high, recurrence rates can be up to 20%. Effective long-term management is needed to monitor for recurrence but faces barriers like a lack of guidelines and coordination for primary care providers. New technologies like computerized clinical practice guidelines and decision aids have the potential to help provide personalized support to thyroid cancer survivors throughout their lifelong follow-up care.
This document announces a request for pilot project proposals focused on analyzing the genomics and transcriptomics of rare tumor subtypes and exceptional responders using already available human tissue samples. Funding of $25,000-$50,000 will be provided for around 5-6 projects to analyze available samples and answer clinically relevant questions. The goal is to encourage collaboration and application of genomic technologies at Fox Chase Cancer Center to classify tumors, identify drivers of cancer, and understand treatment response and resistance in order to advance clinical protocols. Proposals are due June 1, 2015 and must not exceed 5 pages excluding references and budgets.
The document provides an overview of the Department of Defense Ovarian Cancer Research Program (DoD OCRP). It discusses the history and organization of the Congressionally Directed Medical Research Programs (CDMRP) and the DoD OCRP. It summarizes the vision, mission, and funding amounts of the DoD OCRP. It also describes some of the key initiatives funded by the DoD OCRP, including the Consortium Award focusing on prevention, the Outcomes Consortium Award focusing on increasing survivorship, and the Ovarian Cancer Academy aimed at developing the next generation of ovarian cancer researchers.
Health Talk Online is a website featuring over 60 qualitative interview studies with thousands of video and audio clips illustrating patients' health experiences. Each condition-specific site is based on around 40 diverse video-recorded interviews, with around 25 chapters on important topics. The sites are intended for patients, carers, professionals, and policymakers. The collaboration between DIPEx charity and University of Oxford researchers learns from patients' experiences through qualitative research interviews.
The document discusses the qualifications and experiences of an intern applicant. It outlines several past volunteer roles including providing care to pediatric oncology patients, volunteering for a cancer non-profit, and working as a research assistant. The roles developed skills in areas like patient advocacy, public speaking, fundraising, and research strategies. The applicant aims to gain hospital experience and continue advocacy work to further their career as a potential oncologist.
The document discusses the partnership between the Veterans Innovation Center (VIC) and Healthcare Institute for Neuro-Recovery Innovation Labs (HINRI) to improve services for veterans. VIC aims to better coordinate non-government organizations that assist veterans, while HINRI seeks to advance research and treatment for neurological injuries through collaboration between academia, medicine, and business. Their partnership would create a clinical trials platform to test new rehabilitation approaches and treatments based on translational research.
Virtual tumor boards for remote patient oncologyJim Smurro
The document discusses improving cancer clinical trials through networked virtual tumor boards. It notes that multi-specialist team collaborations can boost recruitment and retention of patients for multi-site adaptive clinical trials. This improves treatment and care for remote, rural, and underserved patient populations. Virtual tumor boards allow specialists from different locations to collaborate on patient cases, which strengthens clinical trials and patient outcomes.
This document provides background and objectives for creating a LibGuide to support qualitative researchers in the health sciences. It notes an increasing interest in and use of qualitative research methods but challenges in finding relevant materials due to poor indexing, unfamiliar terminology, and lack of knowledge about social science resources. The guide aims to provide information on publishing qualitative research, finding articles, resources for training and support, and integrating qualitative research into systematic reviews, for both UNC and non-UNC users. It describes the methods used to collect resources, including scanning websites, searching guides and databases, and consulting with experts. The document outlines next steps such as soliciting feedback and considering additional topics.
Developing Evidence-Based Guidelines for Patient-Accessible Medical RecordsChristina Zarcadoolas
This document discusses a proposed study to develop guidelines for making patient medical records more accessible and understandable for patients with low health literacy. The study would analyze examples of personal health records and electronic medical records to identify areas of complexity. Through tasks like health literacy analysis, focus groups, and usability testing, the study aims to provide preliminary guidelines for designing medical records that can be better understood by low-income, minority patients with low education and literacy levels. The goal is to make patient medical information easier for underserved populations to read and use, and to eventually test the effectiveness of these guidelines in a larger study.
Novel Approaches to Value Assessment Within the Cost-Effectiveness Framework:...Office of Health Economics
Slides from the presentation Lou Garrison gave on Novel Approaches to Value Assessment Within the Cost-Effectiveness Framework at the ISPOR Value Summit in Washington DC on October 19th, 2018.
This document outlines the mission and initiatives of CURE OM, an organization dedicated to supporting research for ocular melanoma. Their mission is to support research to develop effective treatments and a cure for ocular melanoma through collaborations. They provide various programs for patients including an annual symposium, webinars, support groups and educational materials. CURE OM also funds research through grants and scientific meetings to bring experts together to advance the field. Their goals include continuing to develop a patient registry and expanding education, support and funding for ocular melanoma research.
Presentation by Sara Selig, MD, MPH. Presented at the 2018 Eyes on a Cure: Patient & Caregiver Symposium, hosted by the Melanoma Research Foundation's CURE OM initiative.
This document summarizes recommendations from a panel discussion on engaging patients in emergency medicine (EM) research. The panel reviewed literature on patient engagement and conducted interviews with EM researchers. They recommend that EM researchers adopt patient engagement to improve research relevance and impact. Specifically, they recommend that the Canadian Association of Emergency Physicians (CAEP) create resources and guidelines to support patient engagement at all stages of research. This includes establishing a national patient council, training materials, and making patient engagement eligible for funding. The panel also provides best practices for the preparatory, execution and translation phases of research that engages patients.
The document discusses the Intensive Care Foundation (ICF), which coordinates over 70% of UK intensive care research. The ICF was established 10 years ago by the Intensive Care Society (ICS) to promote critical care study and research. While the ICS currently provides most funding, the ICF's long-term focus is becoming self-funded through diverse income streams like other medical charities. The ICF has established an important role in the critical care community by funding quality research projects through a competitive peer review process.
The S.T.A.R. Initiative is a culturally appropriate methodology for minority communities to identify, select, and involve researchers to conduct patient-centered outcomes research. It forms "Patient Engagement Clusters" in communities to advise on research selection, planning, and dissemination. The initiative developed from a meeting where African American women saw a need to address disparities. It received awards and partners with researchers and communities. The initiative uses a mobile app and education to help communities select appropriate researchers sensitive to their needs. The goal is for communities to engage in research by selecting researchers and maintaining community-researcher partnerships.
This workshop was presented at the Stanford Medicine Medical and Biosciences Education Day on May 21, 2022. It contains information on training in medical education, publishing tips in health professions education, and some advice for thriving in the field.
Health Datapalooza IV: June 3rd-4th, 2013
Action Beats and Announcements
Patient-Centered Outcomes Research Institute (PCORI) Challenge Winners
PCORI challenged teams to develop a proposal or prototype for a patient/researcher ‘matching’ mechanism or system that can effectively connect potential partners interested in seeking funding for rigorous patient-centered outcomes research. Two winners will be announced.
Presenter: Anne Beal, Chief Operating Officer, Patient-Centered Outcomes Research Institute (PCORI)
The Clinical and Molecular Epidemiology Shared Resource (CMESR) provides services including the collection, processing, and storage of biological samples and clinical data from various cancer patient populations. It assists with IRB protocols, questionnaire data entry and analysis, and sample and data requests for cancer research. The CMESR is located at the Lombardi Cancer Center and houses samples and data on prostate, head and neck, colon, lung, and breast cancers.
The document discusses issues related to building sustainable biobanks. It outlines key factors for biobanks including having a clear purpose that determines their potential for generating knowledge, obtaining sufficient funding, and having a mandate and governance structure. It also stresses the importance of measuring success not just by the number of samples collected but by whether the biobank has accelerated research and discovery. The document uses the example of the Tumour Bank at the Children's Hospital at Westmead, which has supported over 90 projects, contributed samples to studies worldwide, and resulted in numerous publications despite being a small single-institution biobank.
An analysis of patient diversity in oncology clinical trials found that women and minorities are underrepresented compared to their proportions in cancer incidence rates and the general population. The study analyzed data from 2002-2012 on five cancer types and found that women were underrepresented in lung cancer trials, and that black, Asian/Pacific Islander, and American Indian patients had lower odds of enrollment compared to their white counterparts. The results indicate a need for more inclusive trial recruitment practices to improve generalizability and alleviate health disparities.
Patient and doc engagement online westH. Jack West
The document discusses how the relationship between doctors and patients is changing from a unidirectional model to a bidirectional model due to the increasing amount of medical information available online. It notes that the rate of new medical information has more than doubled in the last 20 years, making it impossible for doctors to know everything. As a result, patients are increasingly informed and motivated to help themselves by seeking information from social networks and online resources. This is shifting the interaction between doctors and patients to a more collaborative bidirectional model where physicians are no longer expected to have all the answers and patients play a more active role in their own care.
Thyroid cancer rates are increasing rapidly in Canada. While survival rates are high, recurrence rates can be up to 20%. Effective long-term management is needed to monitor for recurrence but faces barriers like a lack of guidelines and coordination for primary care providers. New technologies like computerized clinical practice guidelines and decision aids have the potential to help provide personalized support to thyroid cancer survivors throughout their lifelong follow-up care.
This document announces a request for pilot project proposals focused on analyzing the genomics and transcriptomics of rare tumor subtypes and exceptional responders using already available human tissue samples. Funding of $25,000-$50,000 will be provided for around 5-6 projects to analyze available samples and answer clinically relevant questions. The goal is to encourage collaboration and application of genomic technologies at Fox Chase Cancer Center to classify tumors, identify drivers of cancer, and understand treatment response and resistance in order to advance clinical protocols. Proposals are due June 1, 2015 and must not exceed 5 pages excluding references and budgets.
The document provides an overview of the Department of Defense Ovarian Cancer Research Program (DoD OCRP). It discusses the history and organization of the Congressionally Directed Medical Research Programs (CDMRP) and the DoD OCRP. It summarizes the vision, mission, and funding amounts of the DoD OCRP. It also describes some of the key initiatives funded by the DoD OCRP, including the Consortium Award focusing on prevention, the Outcomes Consortium Award focusing on increasing survivorship, and the Ovarian Cancer Academy aimed at developing the next generation of ovarian cancer researchers.
Health Talk Online is a website featuring over 60 qualitative interview studies with thousands of video and audio clips illustrating patients' health experiences. Each condition-specific site is based on around 40 diverse video-recorded interviews, with around 25 chapters on important topics. The sites are intended for patients, carers, professionals, and policymakers. The collaboration between DIPEx charity and University of Oxford researchers learns from patients' experiences through qualitative research interviews.
The document discusses the qualifications and experiences of an intern applicant. It outlines several past volunteer roles including providing care to pediatric oncology patients, volunteering for a cancer non-profit, and working as a research assistant. The roles developed skills in areas like patient advocacy, public speaking, fundraising, and research strategies. The applicant aims to gain hospital experience and continue advocacy work to further their career as a potential oncologist.
The document discusses the partnership between the Veterans Innovation Center (VIC) and Healthcare Institute for Neuro-Recovery Innovation Labs (HINRI) to improve services for veterans. VIC aims to better coordinate non-government organizations that assist veterans, while HINRI seeks to advance research and treatment for neurological injuries through collaboration between academia, medicine, and business. Their partnership would create a clinical trials platform to test new rehabilitation approaches and treatments based on translational research.
Virtual tumor boards for remote patient oncologyJim Smurro
The document discusses improving cancer clinical trials through networked virtual tumor boards. It notes that multi-specialist team collaborations can boost recruitment and retention of patients for multi-site adaptive clinical trials. This improves treatment and care for remote, rural, and underserved patient populations. Virtual tumor boards allow specialists from different locations to collaborate on patient cases, which strengthens clinical trials and patient outcomes.
This document provides background and objectives for creating a LibGuide to support qualitative researchers in the health sciences. It notes an increasing interest in and use of qualitative research methods but challenges in finding relevant materials due to poor indexing, unfamiliar terminology, and lack of knowledge about social science resources. The guide aims to provide information on publishing qualitative research, finding articles, resources for training and support, and integrating qualitative research into systematic reviews, for both UNC and non-UNC users. It describes the methods used to collect resources, including scanning websites, searching guides and databases, and consulting with experts. The document outlines next steps such as soliciting feedback and considering additional topics.
Developing Evidence-Based Guidelines for Patient-Accessible Medical RecordsChristina Zarcadoolas
This document discusses a proposed study to develop guidelines for making patient medical records more accessible and understandable for patients with low health literacy. The study would analyze examples of personal health records and electronic medical records to identify areas of complexity. Through tasks like health literacy analysis, focus groups, and usability testing, the study aims to provide preliminary guidelines for designing medical records that can be better understood by low-income, minority patients with low education and literacy levels. The goal is to make patient medical information easier for underserved populations to read and use, and to eventually test the effectiveness of these guidelines in a larger study.
Novel Approaches to Value Assessment Within the Cost-Effectiveness Framework:...Office of Health Economics
Slides from the presentation Lou Garrison gave on Novel Approaches to Value Assessment Within the Cost-Effectiveness Framework at the ISPOR Value Summit in Washington DC on October 19th, 2018.
This document outlines the mission and initiatives of CURE OM, an organization dedicated to supporting research for ocular melanoma. Their mission is to support research to develop effective treatments and a cure for ocular melanoma through collaborations. They provide various programs for patients including an annual symposium, webinars, support groups and educational materials. CURE OM also funds research through grants and scientific meetings to bring experts together to advance the field. Their goals include continuing to develop a patient registry and expanding education, support and funding for ocular melanoma research.
Presentation by Sara Selig, MD, MPH. Presented at the 2018 Eyes on a Cure: Patient & Caregiver Symposium, hosted by the Melanoma Research Foundation's CURE OM initiative.
This document summarizes recommendations from a panel discussion on engaging patients in emergency medicine (EM) research. The panel reviewed literature on patient engagement and conducted interviews with EM researchers. They recommend that EM researchers adopt patient engagement to improve research relevance and impact. Specifically, they recommend that the Canadian Association of Emergency Physicians (CAEP) create resources and guidelines to support patient engagement at all stages of research. This includes establishing a national patient council, training materials, and making patient engagement eligible for funding. The panel also provides best practices for the preparatory, execution and translation phases of research that engages patients.
The document discusses the Intensive Care Foundation (ICF), which coordinates over 70% of UK intensive care research. The ICF was established 10 years ago by the Intensive Care Society (ICS) to promote critical care study and research. While the ICS currently provides most funding, the ICF's long-term focus is becoming self-funded through diverse income streams like other medical charities. The ICF has established an important role in the critical care community by funding quality research projects through a competitive peer review process.
The S.T.A.R. Initiative is a culturally appropriate methodology for minority communities to identify, select, and involve researchers to conduct patient-centered outcomes research. It forms "Patient Engagement Clusters" in communities to advise on research selection, planning, and dissemination. The initiative developed from a meeting where African American women saw a need to address disparities. It received awards and partners with researchers and communities. The initiative uses a mobile app and education to help communities select appropriate researchers sensitive to their needs. The goal is for communities to engage in research by selecting researchers and maintaining community-researcher partnerships.
This workshop was presented at the Stanford Medicine Medical and Biosciences Education Day on May 21, 2022. It contains information on training in medical education, publishing tips in health professions education, and some advice for thriving in the field.
This document summarizes a meeting to discuss research priorities around treatment of severe asthma in African Americans and Hispanics/Latinos. The meeting included introductions from researchers, patients, and other stakeholders. It provided background on the Patient-Centered Outcomes Research Institute (PCORI) and its goal to fund high-priority research questions identified by patients and other stakeholders. The group's objectives were to identify major knowledge gaps in factors contributing to disparities and effective interventions, and to identify 3-5 priority research questions. Suggested questions included comparing interventions or strategies to improve outcomes and overcome barriers to care. The discussion focused on providing targeted input to identify the most critical research needs.
The document describes the S.T.A.R. Initiative, which aims to engage African American women in selecting researchers for patient-centered research. It involves forming "Engagement Clusters" of patients and community members who will identify appropriate researchers, participate in research design, and disseminate results. The initiative includes developing a mobile app for researcher selection, educational curricula, and partnerships with researchers and communities. The goal is to increase minority participation in research by selecting culturally sensitive researchers and involving communities in the entire research process.
Patient advocacy groups play an important role in supporting rare cancer patients and influencing healthcare policy and research. They provide crucial information to help patients make informed decisions. They also advocate for patient needs and priorities to be addressed in policy and research. Advocacy groups can contribute to research by identifying important issues, helping with patient recruitment and monitoring, and ensuring research results are disseminated. International rare cancer advocacy organizations collaborate to support patients globally.
Members of the Coleman Supportive Oncology Collaborative including over 169 cancer care providers from 44 institutions came together in person to share lessons from their 3-year project to improve supportive cancer care across the region and to launch the next step in the Coleman Foundation initiative which is to improve patient communication and experience.
The document discusses collaboration between patient advocacy organizations for rare cancers in Canada. It summarizes discussions from a panel on empowering patients which included representatives from Myeloma Canada, GIST Sarcoma Life Raft Group Canada, and the Canadian Organization for Rare Disorders. The panel addressed issues for rare cancers around definitions, impact vs attention and research, screening, access to specialists, regulatory challenges, treatment pathways, and opportunities for the rare cancers community to work together.
CI4CC Moonshot Blue Ribbon Panel Report 20161010Warren Kibbe
Presentation to the Fall CI4CC meeting in Utah. CI4CC Moonshot Blue Ribbon Panel Report. Highlights of Vice President Biden's Cancer Moonshot and the NCI Blue Ribbon Panel Recommendations.
This document discusses a project called EQUIP that aims to develop new methods for analyzing and displaying qualitative data in patient-centered outcomes research (PCOR). The project will draw on existing studies involving over 200 cancer patients to develop tools for extracting narratives from illness experiences. An "ethnoarray" approach is proposed to visually array patients' narratives based on domains like treatment decisions and social support. The goals are to engage stakeholders like researchers, providers, and patients to establish standards for using qualitative data in PCOR and assess new methods' feasibility in clinical practice. Challenges include bridging different disciplinary approaches, but the project sees opportunities to innovate at the intersection of qualitative and quantitative health research methods.
Treatment Compliance, Therapeutic Education And Phosphorus MissionFrederique Quinio
Phosphorus Mission Educational Tool - Partnership between EDTNA/ERCA and Sanofi
Phosphorus Mission Educational Tool is a software package developed by Sanofi for use by dialysis nurses to educate their patients on how to maintain healthy phosphorus levels.
The patients themselves will also have the option of downloading Phosphorus Mission Educational Tool onto their computers or their mobile telephones outside of a clinic setting.
EDTNA/ERCA validated and accredited this educational tool.
Challenges and Opportunities 07082022 Conference.pptxFredasirwa
The document summarizes a presentation by Prof. Fredrick Chite Asirwa on challenges and opportunities in cancer research reporting in sub-Saharan Africa. It finds that less than 1% of clinical cancer trials are conducted in Africa. Media in Kenya rarely reports on ongoing cancer studies, research findings, or centers conducting cancer research. Challenges include lack of health journalism training, short deadlines, and prioritizing sensational stories over research. Opportunities include partnerships to educate the public and advocate for improved cancer care through research. Recommendations include multidisciplinary collaboration to increase balanced, accurate research reporting across the cancer continuum.
Global Health Education—Global Health Programs: Sigrid HahnUWGlobalHealth
An Integrated Global Health Training Program at the Mt. Sinai School of Medicine, Mt. Sinai in Public Health Program, and Mt. Sinai Center
Sigrid Hahn, Mt. Sinai School of Medicine
'More than a top 10' presentation impact coffee club 4th feb 2020 (1)Claire Vaughan
How James Lind Alliance priority setting partnerships transform research, people and organisations - presentation from the AMRC/NIHR Impact Coffee Club, Tues 04 Feb 2020
In the driving seat: Health care and research led for, and by young peopleSimon R. Stones
This seminar was delivered as part of the University of Central Lancashire (UCLAN) Centre for Children and Young People’s Participation Seminar Series.
The document discusses uveal melanoma (UM) in Ireland. It notes that Ireland has the highest incidence rate of UM in the world at 17.2 cases per million population. An Irish Ocular Oncology Service was established in 2010 to treat UM patients in Dublin, as previously most were sent to Liverpool, UK for treatment. OcuMel Irl was formed in 2017 by three founding members to provide information, support, and advocacy for UM patients and their families, as there was a lack of verbal or written information from the health service. OcuMel Irl's goals are to continue advocating for UM patients, create awareness, support research collaborations, and work towards standardizing surveillance and treatment pathways.
The document summarizes the development of OcuMel UK, a charity that supports patients with ocular melanoma in the UK. It discusses how OcuMel UK was established in 2009, becoming registered as a charity in 2014. It grew its online community and now supports hundreds of patients through information on its website, a helpline, conferences, and by advocating for more research on ocular melanoma. Its priorities include reducing diagnosis delays, improving support for patients and medical professionals, and encouraging research.
Ocumel Canada presented at the Eyes on a Cure Patient & Caregiver Symposium in Raleigh, North Carolina on April 7, 2019. Their presentation discussed the results of a patient survey by the Save Your Skin Foundation to better understand ocular melanoma in Canada, with key goals being to improve patient support, emphasize emotional support, and live their organizational values. They thanked CureOM for their inspiration and support.
Kenny and Sue Colbert share the story of their daughter, Kenan Colbert Koll, and how it led to the initial investigation of ocular melanoma diagnoses in Huntersville, NC.
Uveal melanoma commonly spreads to the liver. This document discusses uveal melanoma (MUM) that has metastasized to the liver. It provides background on MUM, noting that half of patients develop metastases, usually first appearing in the liver. It describes genetic risk factors for metastasis and different risk classifications. The document advocates for locoregional therapies for liver metastases since there are no effective systemic therapies. It presents evidence that liver-directed therapies may prolong survival more than systemic treatments or surveillance alone.
This document provides an overview of targeted therapy approaches for uveal melanoma given by Dr. Marlana Orloff at a patient and caregiver symposium. It defines targeted therapy as drugs that interfere with specific cancer-related molecules and discusses examples of successful targeted therapies in other cancers. For uveal melanoma, the document outlines molecular targets like GNAQ/GNA11 mutations and discusses several targeted drug trials that have shown limited efficacy to date. It also presents emerging areas of interest like compounds targeting the GNAQ/GNA11 mutations directly and epigenetic approaches that could provide indirect targeting of difficult to target genes. In closing, the currently available clinical trials investigating targeted therapies for uveal melanoma are listed
This document summarizes a presentation on uveal melanoma given by Dr. Miguel Materin at a patient symposium. Some key points from the presentation include:
- The Collaborative Ocular Melanoma Study (COMS) showed high diagnostic accuracy for medium and large uveal melanoma tumors and found that for medium tumors, brachytherapy was not worse than enucleation. For large tumors, previous radiation before enucleation provided no benefit.
- Cutaneous and uveal melanoma have different risk factors, presentations, and treatments which are outlined in the NCCN guidelines.
- Dr. Materin discussed ongoing collaborative research including the Collaborative O
Richard Carvajal discusses navigating treatment options for uveal melanoma, focusing on immunotherapeutic strategies. He outlines several systemic treatment approaches including genetic, epigenetic, and immunological targeting. Checkpoint blockade with ipilimumab and nivolumab has shown some efficacy in uveal melanoma but responses are lower than in cutaneous melanoma potentially due to lower tumor mutation burden and PD-L1 expression. Adoptive T cell therapy clinical trials have also shown responses. Ipilimumab and nivolumab are being studied in the adjuvant and metastatic settings. Additional immunotherapies including T cell redirecting therapies targeting gp100 are in clinical trials. Combination strategies may be necessary to improve outcomes for
Overview of radiology basics, scan types and pros and cons of each, presented by David J. Eschelman, MD, FSIR, Professor of Radiology, Sidney Kimmel Medical College of Thomas Jefferson University, Co-Director of Interventional Radiology, Thomas Jefferson University Hospital.
1. Activating mutations in the GNAQ or GNA11 genes occur in approximately 90% of uveal melanoma cases and drive tumor proliferation through downstream signaling pathways.
2. The small GTPase ARF6 is activated by oncogenic GNAQ and plays a key role in orchestrating multiple oncogenic signaling pathways in uveal melanoma cells.
3. Inhibiting ARF6, either through genetic silencing or pharmacological inhibition with the specific ARF6 inhibitor NAV-2729, reduces uveal melanoma cell proliferation in vitro and tumor establishment and growth in vivo, suggesting ARF6 may be a promising molecular target for uveal melanoma treatment.
This document discusses treatment options for metastatic uveal melanoma to the liver. It describes Jefferson's experience treating over 650 patients per year with metastatic uveal melanoma through a multidisciplinary team approach. Key treatments discussed include immunoembolization using GM-CSF, which has shown response rates of 32% and median overall survival of 14.4 months. Yttrium-90 microsphere radioembolization is also discussed as a salvage treatment for patients who have progressed on other therapies, with median overall survival of 10 months. The document emphasizes the importance of locoregional therapies for this disease given the lack of effective systemic therapies.
Presentation by David J. Eschelman, MD, FSIR. Presented at the 2018 Eyes on a Cure: Patient & Caregiver Symposium, hosted by the Melanoma Research Foundation's CURE OM initiative.
Presentation by Michael Brennan, MD. Presented at the 2018 Eyes on a Cure: Patient & Caregiver Symposium, hosted by the Melanoma Research Foundation's CURE OM initiative.
Presentation by Chad Kimbler and Carla Tressell. Presented at the 2018 Eyes on a Cure: Patient & Caregiver Symposium, hosted by the Melanoma Research Foundation's CURE OM initiative.
Our backs are like superheroes, holding us up and helping us move around. But sometimes, even superheroes can get hurt. That’s where slip discs come in.
Muktapishti is a traditional Ayurvedic preparation made from Shoditha Mukta (Purified Pearl), is believed to help regulate thyroid function and reduce symptoms of hyperthyroidism due to its cooling and balancing properties. Clinical evidence on its efficacy remains limited, necessitating further research to validate its therapeutic benefits.
- Video recording of this lecture in English language: https://youtu.be/Pt1nA32sdHQ
- Video recording of this lecture in Arabic language: https://youtu.be/uFdc9F0rlP0
- Link to download the book free: https://nephrotube.blogspot.com/p/nephrotube-nephrology-books.html
- Link to NephroTube website: www.NephroTube.com
- Link to NephroTube social media accounts: https://nephrotube.blogspot.com/p/join-nephrotube-on-social-media.html
Osteoporosis - Definition , Evaluation and Management .pdfJim Jacob Roy
Osteoporosis is an increasing cause of morbidity among the elderly.
In this document , a brief outline of osteoporosis is given , including the risk factors of osteoporosis fractures , the indications for testing bone mineral density and the management of osteoporosis
One health condition that is becoming more common day by day is diabetes.
According to research conducted by the National Family Health Survey of India, diabetic cases show a projection which might increase to 10.4% by 2030.
Hiranandani Hospital in Powai, Mumbai, is a premier healthcare institution that has been serving the community with exceptional medical care since its establishment. As a part of the renowned Hiranandani Group, the hospital is committed to delivering world-class healthcare services across a wide range of specialties, including kidney transplantation. With its state-of-the-art facilities, advanced medical technology, and a team of highly skilled healthcare professionals, Hiranandani Hospital has earned a reputation as a trusted name in the healthcare industry. The hospital's patient-centric approach, coupled with its focus on innovation and excellence, ensures that patients receive the highest standard of care in a compassionate and supportive environment.
Rasamanikya is a excellent preparation in the field of Rasashastra, it is used in various Kushtha Roga, Shwasa, Vicharchika, Bhagandara, Vatarakta, and Phiranga Roga. In this article Preparation& Comparative analytical profile for both Formulationon i.e Rasamanikya prepared by Kushmanda swarasa & Churnodhaka Shodita Haratala. The study aims to provide insights into the comparative efficacy and analytical aspects of these formulations for enhanced therapeutic outcomes.
These lecture slides, by Dr Sidra Arshad, offer a quick overview of the physiological basis of a normal electrocardiogram.
Learning objectives:
1. Define an electrocardiogram (ECG) and electrocardiography
2. Describe how dipoles generated by the heart produce the waveforms of the ECG
3. Describe the components of a normal electrocardiogram of a typical bipolar lead (limb II)
4. Differentiate between intervals and segments
5. Enlist some common indications for obtaining an ECG
6. Describe the flow of current around the heart during the cardiac cycle
7. Discuss the placement and polarity of the leads of electrocardiograph
8. Describe the normal electrocardiograms recorded from the limb leads and explain the physiological basis of the different records that are obtained
9. Define mean electrical vector (axis) of the heart and give the normal range
10. Define the mean QRS vector
11. Describe the axes of leads (hexagonal reference system)
12. Comprehend the vectorial analysis of the normal ECG
13. Determine the mean electrical axis of the ventricular QRS and appreciate the mean axis deviation
14. Explain the concepts of current of injury, J point, and their significance
Study Resources:
1. Chapter 11, Guyton and Hall Textbook of Medical Physiology, 14th edition
2. Chapter 9, Human Physiology - From Cells to Systems, Lauralee Sherwood, 9th edition
3. Chapter 29, Ganong’s Review of Medical Physiology, 26th edition
4. Electrocardiogram, StatPearls - https://www.ncbi.nlm.nih.gov/books/NBK549803/
5. ECG in Medical Practice by ABM Abdullah, 4th edition
6. Chapter 3, Cardiology Explained, https://www.ncbi.nlm.nih.gov/books/NBK2214/
7. ECG Basics, http://www.nataliescasebook.com/tag/e-c-g-basics
Histololgy of Female Reproductive System.pptxAyeshaZaid1
Dive into an in-depth exploration of the histological structure of female reproductive system with this comprehensive lecture. Presented by Dr. Ayesha Irfan, Assistant Professor of Anatomy, this presentation covers the Gross anatomy and functional histology of the female reproductive organs. Ideal for students, educators, and anyone interested in medical science, this lecture provides clear explanations, detailed diagrams, and valuable insights into female reproductive system. Enhance your knowledge and understanding of this essential aspect of human biology.
These lecture slides, by Dr Sidra Arshad, offer a simplified look into the mechanisms involved in the regulation of respiration:
Learning objectives:
1. Describe the organisation of respiratory center
2. Describe the nervous control of inspiration and respiratory rhythm
3. Describe the functions of the dorsal and respiratory groups of neurons
4. Describe the influences of the Pneumotaxic and Apneustic centers
5. Explain the role of Hering-Breur inflation reflex in regulation of inspiration
6. Explain the role of central chemoreceptors in regulation of respiration
7. Explain the role of peripheral chemoreceptors in regulation of respiration
8. Explain the regulation of respiration during exercise
9. Integrate the respiratory regulatory mechanisms
10. Describe the Cheyne-Stokes breathing
Study Resources:
1. Chapter 42, Guyton and Hall Textbook of Medical Physiology, 14th edition
2. Chapter 36, Ganong’s Review of Medical Physiology, 26th edition
3. Chapter 13, Human Physiology by Lauralee Sherwood, 9th edition
2. FOUNDER: DIANA ASHBY
Diana founded the MRF after the third recurrence of her tumors
and the loss of several friends to melanoma. She started to
investigate alternative therapies and trials of promising new
drugs to discover research was limited by funding.
In accordance with Diana’s vision…by funding basic cancer
research…we can make a difference in the lives of others. Her
remarkable enthusiasm, hopeful vision and unique compassion
for others lives on in the organization she founded to help find
the cure for malignant melanoma. She worked night and
day…finally stopping only when the cancer had taken her
eyesight and her voice.”
- Captain Jeff Ashby, NASA astronaut and Diana’s
husband
5
3. To accelerate medical RESEARCH to find life-saving
advances;
To EDUCATE patients, caregivers, and the public about
prevention, diagnosis and treatment;
To serve as an ADVOCATE for the melanoma community,
both cutaneous and rare subtypes
2
MISSION
4. 3
“Thank you for
providing these life-
saving publications.
They have been
extremely beneficial
for our patients.”
“Without these
materials I would only
be providing
sunscreen educational
information and basic
skin cancer facts and
these materials are
extremely helpful for
educating the public,
especially during
health fairs.”
“I am the Melanoma
Nurse Navigator at our
hospital. Every new
patient with a
melanoma diagnosis
receives material from
MRF.”
EDUCATION
7. SCIENCE & RESEARCH: CORE ACTIVITIES
Grantmaking
Scientific Initiatives
– Creation of Resources
•Breakthrough Consortium
•Virtual Repository
– Rare Subtype Focus, Ocular Melanoma
– Scientific Topic Meetings, e.g., Brain Metastases
Support to the Field
– Society for Melanoma Research (SMR) Awards
5
8. SUMMARY OF GRANT PROGRAM
7
From 1998 to 2018, the MRF has awarded:
• Spans 69 institutions in 26 states
• Includes investigators at all stages in their career path
9. GRANT MECHANISMS
8
Types of
Grants
Purpose Eligibility Duration
Medical
Student
Introduces students early in their career to
clinical/ research opportunities under the
mentorship of an investigator engaged in
melanoma research
Medical students at an accredited
US medical school or institution
1 year
Career
Development
Enables young researchers to generate the
groundwork that can leverage additional
grant funding from other funding bodies
Junior investigators which include:
Postdoctoral fellows with less
than five years of postdoctoral
experience OR
A research associate,
instructor, assistant professor
or the equivalent.
2 years
Established
Investigator
Encourages proven researchers to
continue research on emerging challenges
in melanoma
Established researchers,mainly
faculty with at least an Associate
Professor appointment
2 years
Team Encourages collaboration across academic
disciplines in an institution or among
multiple institutions
A PI and at least one co-PI, ideally
from different institutions
2 years
10. 2019 RESARCH GRANTS
• Awarded 11 MRF Medical Student Awards
• Awarded 1 MRFBC-BMS YI Research Team Award to Advance the
Field of Translational Immuno-Oncology
• Current MRF Grant RFP includes:
– CURE OM Team Award
– Established Investigator Awards (EIAs)
– Career Development Awards (CDA) including specific CDAs on:
• Pediatric Melanoma
• Melanoma Brain Metastases
– Specific topics of interest (STPs) include epigenetics, prevention,
metastases, and response to treatment
Developing structured training to better support advocates in the grant review
program
5
11. AREAS OF FUNDED RESEARCH
(through traditional grant program only)
10
12. RESEARCH GRANT IMPACT (ROI)
5
As of August 2018, research grant funding from the MRF has resulted in:
• This grant was the first one I was awarded after finishing my medical training, and
tremendously helped me establish my academic career. Since then, 20 more grants (mostly
as PI) were obtained and finished. (CDA Recipient)
• The MRF grant was instrumental in helping us to advance our melanoma research program
and to connect with the melanoma community. (EIA Recipient)
• NIH-type funding mechanisms are not appropriate for the research proposed herein since it is
the kind of research that is considered “risky” by study sections. Only visionary funds like the
MRF can overcome the vicious cycle of “no preliminary data that demonstrate the concept/no
funding” which we are all used to getting from the NIH review process. (EIA Recipient)
Very active web presence – people are diagnosed, they google and they find the MRF.
Resources for newly diagnosed patients, support for caregivers, online patient communities for connecting to each other, Ask a Nurse hotline.
Young adult online community, MPIP, Buddy Program
Downloadable educational resources