Patients at the Centre for Health Research – Patient, Carer and Public Invol...Nowgen
"Patients at the Centre for Health Research –
Patient, Carer and Public Involvement in NICE Decision-Making", presented by Victoria Thomas, NICE, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Patient involvement in medicines development – the views of patients and key ...Nowgen
"EUPATI – EU: An overview", held by Bella Starling & Suzanne Parsons (EUPATI / Nowgen) at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Involving People: Patients, Participants & Consumers in U.K.Cancer Research (...Nowgen
Involving People: Patients, Participants & Consumers in U.K.Cancer Research, presented by Richard Stephens at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Bringing the patient voice into GSK for educational, awareness and patient ce...Nowgen
"Bringing the patient voice into GlaxoSmithKline for educational, awareness and patient centred decisions within medicine development", presented by Kay Warner, Global Manager, Focus on the Patient, GlaxoSmithKline, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
INVOLVE perspectives on learning and development (Sarah Buckland, INVOLVE)Nowgen
"INVOLVE perspectives on learning and development", presented by Sarah Buckland, INVOLVE, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Patient involvement in clinical research and long term conditions -what can b...Nowgen
"Patient involvement in clinical research and long term conditions -what can be achieved by working in partnership", presented by Dr. J. Paul Schofield, ABPI, at EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
PPI Summer School, UL - Laura Kavanagh - June 2017ipposi
This document discusses patient involvement in health innovation and research. It introduces IPPOSI, a patient-led organization that advocates for improved patient access to health innovation and meaningful patient involvement in health research and policy. IPPOSI runs various patient-led activities and provides training to educate patient communities. The EUPATI program also trains "expert patients" on medicines research and development to take on leadership roles advising organizations. While challenges remain, patient involvement can provide different perspectives to improve research quality by ensuring methods and outcomes important to patients are considered. Education and training of both patients and researchers is key to furthering patient involvement.
Health information Seminar - Dr Derick Mitchell - Oct 2017ipposi
This document summarizes discussions from an IPPOSI (Influencing Policy, Activating Patients, Harnessing Industry) event on patient involvement in health innovation.
IPPOSI is a patient-led organization that advocates for improved patient access to health innovation by promoting meaningful patient involvement in health research and policy. The event discussed how patient voices are changing health innovation through surveys and the EUPATI program which trains patients as experts in medical research. National platforms in many European countries have been established through EUPATI to address educational needs and disseminate training. Patient roles and leadership have increased as a result of the EUPATI course. A roadmap was presented on how patients can be involved at different stages of the
Patients at the Centre for Health Research – Patient, Carer and Public Invol...Nowgen
"Patients at the Centre for Health Research –
Patient, Carer and Public Involvement in NICE Decision-Making", presented by Victoria Thomas, NICE, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Patient involvement in medicines development – the views of patients and key ...Nowgen
"EUPATI – EU: An overview", held by Bella Starling & Suzanne Parsons (EUPATI / Nowgen) at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Involving People: Patients, Participants & Consumers in U.K.Cancer Research (...Nowgen
Involving People: Patients, Participants & Consumers in U.K.Cancer Research, presented by Richard Stephens at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Bringing the patient voice into GSK for educational, awareness and patient ce...Nowgen
"Bringing the patient voice into GlaxoSmithKline for educational, awareness and patient centred decisions within medicine development", presented by Kay Warner, Global Manager, Focus on the Patient, GlaxoSmithKline, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
INVOLVE perspectives on learning and development (Sarah Buckland, INVOLVE)Nowgen
"INVOLVE perspectives on learning and development", presented by Sarah Buckland, INVOLVE, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Patient involvement in clinical research and long term conditions -what can b...Nowgen
"Patient involvement in clinical research and long term conditions -what can be achieved by working in partnership", presented by Dr. J. Paul Schofield, ABPI, at EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
PPI Summer School, UL - Laura Kavanagh - June 2017ipposi
This document discusses patient involvement in health innovation and research. It introduces IPPOSI, a patient-led organization that advocates for improved patient access to health innovation and meaningful patient involvement in health research and policy. IPPOSI runs various patient-led activities and provides training to educate patient communities. The EUPATI program also trains "expert patients" on medicines research and development to take on leadership roles advising organizations. While challenges remain, patient involvement can provide different perspectives to improve research quality by ensuring methods and outcomes important to patients are considered. Education and training of both patients and researchers is key to furthering patient involvement.
Health information Seminar - Dr Derick Mitchell - Oct 2017ipposi
This document summarizes discussions from an IPPOSI (Influencing Policy, Activating Patients, Harnessing Industry) event on patient involvement in health innovation.
IPPOSI is a patient-led organization that advocates for improved patient access to health innovation by promoting meaningful patient involvement in health research and policy. The event discussed how patient voices are changing health innovation through surveys and the EUPATI program which trains patients as experts in medical research. National platforms in many European countries have been established through EUPATI to address educational needs and disseminate training. Patient roles and leadership have increased as a result of the EUPATI course. A roadmap was presented on how patients can be involved at different stages of the
A presentation delivered by IPPOSI CEO, Derick Mitchell at the Irish Brain Council-Neurological Allinace of ireland joint event in the Science Gallery, Dublin on March 7th, 2017.
A presentation delivered by IPPOSI CEO, Derick Mitchell at the University College Dublin PharmTox Society event on Clinical Trials in Ireland on March 6th, 2017
CER 2016 Jacoby stakeholder engagementCTSI at UCSF
This document discusses stakeholder engagement in patient-centered outcomes research. It begins by explaining the change from a researcher-centered model to including stakeholders. Key stakeholders are identified as patients, providers, drug/device companies, insurers, and advocates. Stakeholder engagement is required by PCORI to support funding, improve enrollment, strengthen research design, and broaden impact. Examples are provided of how a study on uterine fibroid treatment engaged stakeholders in design, recruitment, and dissemination of results. Challenges and new approaches like crowdsourcing input are also discussed.
The document discusses new initiatives at the Patient-Centered Outcomes Research Institute (PCORI) related to pragmatic clinical studies and engagement. Key points include:
- PCORI is emphasizing large pragmatic clinical studies to compare medical interventions and engage patients and other stakeholders throughout the research process.
- New areas of focus include establishing study advisory committees involving stakeholders, engaging medical societies in research, and funding the dissemination of study results.
- PCORI is prioritizing research topics nominated by patients and other stakeholders and conducting targeted funding opportunities on focused clinical questions.
Richard Neal LTC _Consensus Meeting 10-Nov-2015angewatkins
PRIME Centre Wales
Long Term Conditions Consensus Meeting
Tuesday 10th November 2015, St Mary's Priory, Abergavenny, NP7 5ND
http://www.primecentre.wales/ltc-consensus-meeting.php
UCD Rare Disease Module 2017 - Dr Derick Mitchell - March 28th 2017ipposi
Medical students taking the elective course in rare diseases are provided a number of patient perspectives throughout the module. This is what IPPOSI presented in 2017.
PE101: Introduction to Patient Engagement in Health ResearchCHICommunications
The document introduces patient engagement and the PREPPP award launch. It defines patient-oriented research as research engaged conducted with patients as partners that focuses on patient priorities and aims to improve outcomes and healthcare. Patient engagement means the meaningful involvement of patients in the governance, priority-setting, conduct, and knowledge translation of research. It discusses why engagement is important to ensure research addresses issues important to patients and improves outcomes. It also outlines levels of engagement from passive to active collaborative partnerships and provides resources for learning more about patient engagement.
This document discusses engaging patients in clinical research. It notes that currently many clinical practice guidelines have low levels of evidence due to gaps in research evidence. Involving patients throughout the research process from designing studies to disseminating results can help address these gaps. The document outlines various roles patients can play at each stage of research, from providing input on study design to assisting with study recruitment and monitoring studies. It also discusses challenges like making protocols feasible for patients. The PROSPER study is highlighted as an example of patient-centered research that addresses outcomes important to patients. The conclusion emphasizes that patients will continue driving improvements in care and should be meaningfully engaged in the research process.
CHESS Connected Health training network - Derick Mitchell - August 2016ipposi
Patient-led organizations can play an important role in health research by providing the patient perspective. Training programs help develop "expert patients" who understand the research process and can actively partner with researchers. The EUPATI program has trained over 100 patient experts across Europe to collaborate in academic research, industry research, and regulatory committees. Their involvement aims to make research more relevant to patients' real needs and lives.
This document discusses improving patient involvement in clinical research. It outlines potential advantages of patient involvement including better understanding patient needs, identifying trial hurdles and relevant outcomes, and improving trial protocols and recruitment. Challenges to patient involvement include a lack of experience, unclear rules for collaborating with advocacy groups, and balancing patient wishes with feasibility. The document describes Janssen collaborating with advocacy groups on a prostate cancer trial after they identified recruitment issues. It also discusses overcoming barriers through codes of practice and measuring outcomes of collaboration developed with EUPATI.
This case study by PREPPP Award winner Dr. Anna Chudyk and her team discusses experiences, lessons learned, and barriers and facilitators to engaging in health research scoping reviews.
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.
CER 2016 Nguyen ctsi collaborative researchCTSI at UCSF
This document describes the Health Within Reach project, a collaborative effort between UCSF, SFGH, and SF Hep B Free to improve hepatitis B and C screening for Asian Americans. The team was formed due to their shared focus on Asian American health disparities and complementary expertise in clinical research, community engagement, and multi-lingual interventions. Challenges in collaborating across organizations were addressed through regular communication, consensus decision-making, and flexibility. The project aims to develop and evaluate a video and provider alert intervention to increase screening rates.
CER 2016 Phillips cer symposium pcori 2016 from 012716CTSI at UCSF
This document discusses the development of PCORI's research agenda on personalized and precision medicine. It outlines Kathryn Phillips' role as an advisor to PCORI on this topic. Specifically, it describes efforts to develop targeted funding opportunities through PCORI that address key issues within personalized medicine while adhering to PCORI's mandate of comparative effectiveness research. This includes conducting expert interviews and stakeholder meetings to inform the development of research funding announcements focused on direct comparisons of personalized medicine approaches in real-world settings.
This document summarizes opportunities for patient and caregiver involvement in technology appraisals conducted by the National Institute for Health and Clinical Excellence (NICE) in the UK. It outlines when patients can provide input throughout the appraisal process, including topic suggestion, scoping, evidence submission and review, and committee meetings. Patient groups and individuals can comment on draft documents and attend meetings. The document also reviews what information patients provide, such as personal impacts, outcomes, and experiences using technologies. Finally, it discusses challenges of patient involvement and feedback from surveys and interviews, with some patients feeling their views are not weighted equally and processes can be intimidating.
Is there patient involvement in HTA? Can patients influence HTA decision making?Kathi Apostolidis
Is HTA purely technical?
drivers for patient involvement in HTA
patient participation or tokenism
medicines do not reach patients due to delays in HTA evaluation
need for harmonized HTA
This document discusses the benefits of patient and public involvement (PPI) in clinical trials. PPI can enhance the relevance of clinical research by ensuring the research questions and design address patient priorities and experiences. Case studies demonstrate how PPI improved informed consent materials, addressed logistical barriers to participation, and increased recruitment and retention. When done effectively, PPI leads to clinical trials that are more meaningful to patients and deliver research that better addresses patient needs.
EUPATI 2013 Conference: Vision on Patient involvement in medicines R&D: Here...EUPATI
This document discusses increasing patient involvement in medical research and development. It notes that the medical landscape is transforming rapidly through innovations like personalized medicine and biomarkers. While this benefits patients, it also means smaller trial populations and a need for more post-marketing data. The document advocates for increasing patient involvement in areas like clinical trial design, setting research priorities, measuring quality of life, and pharmaceutical policy. It highlights the European Patients' Academy (EUPATI) project, which aims to empower patients through education on medical research and development processes in order to facilitate greater patient engagement.
PPPI - the involvement of patients or people in the design and development o...ipposi
Dr Jean Saunders, University of Limerick, and IPPOSI Board Member (Science) presents at the 5th World Congress on Advanced Clinical Trials and Clinical Research on public and patient involvement in clinical trials.
A presentation delivered by IPPOSI CEO, Derick Mitchell at the Irish Brain Council-Neurological Allinace of ireland joint event in the Science Gallery, Dublin on March 7th, 2017.
A presentation delivered by IPPOSI CEO, Derick Mitchell at the University College Dublin PharmTox Society event on Clinical Trials in Ireland on March 6th, 2017
CER 2016 Jacoby stakeholder engagementCTSI at UCSF
This document discusses stakeholder engagement in patient-centered outcomes research. It begins by explaining the change from a researcher-centered model to including stakeholders. Key stakeholders are identified as patients, providers, drug/device companies, insurers, and advocates. Stakeholder engagement is required by PCORI to support funding, improve enrollment, strengthen research design, and broaden impact. Examples are provided of how a study on uterine fibroid treatment engaged stakeholders in design, recruitment, and dissemination of results. Challenges and new approaches like crowdsourcing input are also discussed.
The document discusses new initiatives at the Patient-Centered Outcomes Research Institute (PCORI) related to pragmatic clinical studies and engagement. Key points include:
- PCORI is emphasizing large pragmatic clinical studies to compare medical interventions and engage patients and other stakeholders throughout the research process.
- New areas of focus include establishing study advisory committees involving stakeholders, engaging medical societies in research, and funding the dissemination of study results.
- PCORI is prioritizing research topics nominated by patients and other stakeholders and conducting targeted funding opportunities on focused clinical questions.
Richard Neal LTC _Consensus Meeting 10-Nov-2015angewatkins
PRIME Centre Wales
Long Term Conditions Consensus Meeting
Tuesday 10th November 2015, St Mary's Priory, Abergavenny, NP7 5ND
http://www.primecentre.wales/ltc-consensus-meeting.php
UCD Rare Disease Module 2017 - Dr Derick Mitchell - March 28th 2017ipposi
Medical students taking the elective course in rare diseases are provided a number of patient perspectives throughout the module. This is what IPPOSI presented in 2017.
PE101: Introduction to Patient Engagement in Health ResearchCHICommunications
The document introduces patient engagement and the PREPPP award launch. It defines patient-oriented research as research engaged conducted with patients as partners that focuses on patient priorities and aims to improve outcomes and healthcare. Patient engagement means the meaningful involvement of patients in the governance, priority-setting, conduct, and knowledge translation of research. It discusses why engagement is important to ensure research addresses issues important to patients and improves outcomes. It also outlines levels of engagement from passive to active collaborative partnerships and provides resources for learning more about patient engagement.
This document discusses engaging patients in clinical research. It notes that currently many clinical practice guidelines have low levels of evidence due to gaps in research evidence. Involving patients throughout the research process from designing studies to disseminating results can help address these gaps. The document outlines various roles patients can play at each stage of research, from providing input on study design to assisting with study recruitment and monitoring studies. It also discusses challenges like making protocols feasible for patients. The PROSPER study is highlighted as an example of patient-centered research that addresses outcomes important to patients. The conclusion emphasizes that patients will continue driving improvements in care and should be meaningfully engaged in the research process.
CHESS Connected Health training network - Derick Mitchell - August 2016ipposi
Patient-led organizations can play an important role in health research by providing the patient perspective. Training programs help develop "expert patients" who understand the research process and can actively partner with researchers. The EUPATI program has trained over 100 patient experts across Europe to collaborate in academic research, industry research, and regulatory committees. Their involvement aims to make research more relevant to patients' real needs and lives.
This document discusses improving patient involvement in clinical research. It outlines potential advantages of patient involvement including better understanding patient needs, identifying trial hurdles and relevant outcomes, and improving trial protocols and recruitment. Challenges to patient involvement include a lack of experience, unclear rules for collaborating with advocacy groups, and balancing patient wishes with feasibility. The document describes Janssen collaborating with advocacy groups on a prostate cancer trial after they identified recruitment issues. It also discusses overcoming barriers through codes of practice and measuring outcomes of collaboration developed with EUPATI.
This case study by PREPPP Award winner Dr. Anna Chudyk and her team discusses experiences, lessons learned, and barriers and facilitators to engaging in health research scoping reviews.
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.
CER 2016 Nguyen ctsi collaborative researchCTSI at UCSF
This document describes the Health Within Reach project, a collaborative effort between UCSF, SFGH, and SF Hep B Free to improve hepatitis B and C screening for Asian Americans. The team was formed due to their shared focus on Asian American health disparities and complementary expertise in clinical research, community engagement, and multi-lingual interventions. Challenges in collaborating across organizations were addressed through regular communication, consensus decision-making, and flexibility. The project aims to develop and evaluate a video and provider alert intervention to increase screening rates.
CER 2016 Phillips cer symposium pcori 2016 from 012716CTSI at UCSF
This document discusses the development of PCORI's research agenda on personalized and precision medicine. It outlines Kathryn Phillips' role as an advisor to PCORI on this topic. Specifically, it describes efforts to develop targeted funding opportunities through PCORI that address key issues within personalized medicine while adhering to PCORI's mandate of comparative effectiveness research. This includes conducting expert interviews and stakeholder meetings to inform the development of research funding announcements focused on direct comparisons of personalized medicine approaches in real-world settings.
This document summarizes opportunities for patient and caregiver involvement in technology appraisals conducted by the National Institute for Health and Clinical Excellence (NICE) in the UK. It outlines when patients can provide input throughout the appraisal process, including topic suggestion, scoping, evidence submission and review, and committee meetings. Patient groups and individuals can comment on draft documents and attend meetings. The document also reviews what information patients provide, such as personal impacts, outcomes, and experiences using technologies. Finally, it discusses challenges of patient involvement and feedback from surveys and interviews, with some patients feeling their views are not weighted equally and processes can be intimidating.
Is there patient involvement in HTA? Can patients influence HTA decision making?Kathi Apostolidis
Is HTA purely technical?
drivers for patient involvement in HTA
patient participation or tokenism
medicines do not reach patients due to delays in HTA evaluation
need for harmonized HTA
This document discusses the benefits of patient and public involvement (PPI) in clinical trials. PPI can enhance the relevance of clinical research by ensuring the research questions and design address patient priorities and experiences. Case studies demonstrate how PPI improved informed consent materials, addressed logistical barriers to participation, and increased recruitment and retention. When done effectively, PPI leads to clinical trials that are more meaningful to patients and deliver research that better addresses patient needs.
EUPATI 2013 Conference: Vision on Patient involvement in medicines R&D: Here...EUPATI
This document discusses increasing patient involvement in medical research and development. It notes that the medical landscape is transforming rapidly through innovations like personalized medicine and biomarkers. While this benefits patients, it also means smaller trial populations and a need for more post-marketing data. The document advocates for increasing patient involvement in areas like clinical trial design, setting research priorities, measuring quality of life, and pharmaceutical policy. It highlights the European Patients' Academy (EUPATI) project, which aims to empower patients through education on medical research and development processes in order to facilitate greater patient engagement.
PPPI - the involvement of patients or people in the design and development o...ipposi
Dr Jean Saunders, University of Limerick, and IPPOSI Board Member (Science) presents at the 5th World Congress on Advanced Clinical Trials and Clinical Research on public and patient involvement in clinical trials.
Research managers jan 14th, 2016 - ipposi presentationipposi
Irish Platform for Patient Organisations, Science & Industry - the importance of patient involvement in research, and patient training on medicines development and health research.
Introduction to the workshop and EUPATI updateEUPATI
The European Patients' Academy (EUPATI) project aims to educate patients and the public about medical research and development. It provides training to help patients become experts who can actively partner with researchers. The project is led by patients and involves various stakeholders. It has made progress in developing educational materials in multiple languages and establishing national networks. The first training course for patient experts recently began. EUPATI seeks to build understanding and empower patients to more actively engage in research.
NCPE Annual Training Day - March 10th 2016 - Derick Mitchellipposi
This document summarizes a training course on patient involvement in healthcare decision-making hosted by IPPOSI, a partnership between patient groups, industry, and science in Ireland. It discusses IPPOSI's mission to bring the patient perspective to research and policy. It outlines IPPOSI's goals for patient involvement in health technology assessment, their partnership with HIQA and NCPE, and an annual HTA training for patients. It also provides examples of patient involvement in other jurisdictions and values for patient and public involvement.
Education of patients (advocates) on R&D: European Patients’ Academy EUPATI...jangeissler
"Education of patients (advocates) on R&D: European Patients’ Academy EUPATI", presented by Jan Geissler at the Careum Congress on 18 March 2014 in Basel
This document summarizes a presentation about patient involvement in research. It discusses:
1) IPPOSI, an organization that brings together patient groups, industry, and science to expedite development of innovative therapies and influence related policy in Ireland.
2) Current levels of clinical trial activity and the Irish public's attitudes toward clinical research, which show limited understanding but willingness to participate.
3) The need for more patient and researcher training to build understanding and partnership. The EUPATI program provides such training to develop "patient experts" who can meaningfully contribute to research.
4) Ireland's national platform involves several patient organizations to disseminate EUPATI training and build expertise among patients and advocates.
EUPATI Status Update at EMA PCWP Meeting, 26 Nov 2015jangeissler
Overview and Status Quo of the European Patients Academy (EUPATI) project, presented by EUPATI Director Jan Geissler at the EMA Patient and Consumer Working Party (PCWP) meeting in London on 26 Nov 2015
European Patients' Academy - Presentation at IMI Patient Focus Meeting on 12 ...EUPATI
European Patients' Academy - Presentation at IMI Patient Focus Meeting on 12 June 2013, presented by Jan Geissler (@jangeissler), Director EUPATI (@EUPATIents) at the IMI's "Patient Focus" meeting, convening patient leaders from across Europe
EUPATI’s framework on Informing the “health-interested” public about medicine...Nowgen
"EUPATI's framework on Informing the “health-interested” public objectively and comprehensively about medicines R&D", presented by Jan Geissler at the EUPATI 2014 Workshop in Warsaw
This document discusses biobanking from the patient perspective. It provides information about IPPOSI, a partnership between patient groups, industry, and science that aims to expedite development and patient access to innovative therapies. IPPOSI receives funding from the Irish Department of Health and industry membership fees. It also discusses the role of "patient experts" who are trained by IPPOSI and EUPATI on clinical research, health technology assessment, and other topics to disseminate information. The document outlines IPPOSI's involvement with BBMRI to include the patient perspective in biobanking initiatives and form research partnerships. It notes challenges with patient consent, data management, and costs for patient registries and the potential for legislation to mandate
This document summarizes an organization called IPPOSI that trains patient experts on clinical research, health technology assessment, and eHealth. It discusses IPPOSI's members from science and industry backgrounds. It also describes EUPATI, a project that develops patient education on medicines research and development. EUPATI has trained over 100 patient experts and created educational materials available to over 12,000 patient advocates and 100,000 members of the public interested in health topics. The goal is to facilitate greater patient involvement in research by building competencies among patients.
This document summarizes Derick Mitchell's presentation on the Irish Patient Partnership for Science, Industry and Society (IPPOSI). The key points are:
1. IPPOSI brings together patient groups, industry, and science to expedite development and patient access to innovative therapies in Ireland. They aim to bring a patient perspective to clinical research and policy development.
2. Preliminary results from a Northern Ireland electronic clinical records program showed an 80% reduction in medical report requests and improved quality of doctor-patient interactions.
3. Ensuring good communication, privacy, access and accountability will be important considerations for Ireland's planned National Register of Individual Health Identifiers.
4. Training "expert patients"
Future Health Summit - Dr Derick Mitchell - May 26th 2016ipposi
This document discusses patient involvement in health research. It describes how patients can play key roles across various aspects of research including as public advisors, reviewers, co-researchers, and driving forces. It also outlines training programs for patients, such as those developed by IPPOSI and EUPATI, and how patients can be educated on clinical research, health technology assessment, and other areas. The goal is for patients to have objective knowledge about medical research and development processes to facilitate greater collaboration between patients and researchers.
IPPOSI CEO Derick Mitchell delivered a presentation on Dec 6th 2019 at the Digital health Conference, organised as part of the Royal College of Physicians, Ireland
EPIS meeting - Dr Derick Mitchell - October 2017ipposi
Derick Mitchell gave a talk on sustaining patient engagement resources through public-private platforms. Some key points:
1. He discussed IPPOSI, a patient-led organization that advocates for patient involvement in health innovation and research.
2. Patient organizations and industry can interact by moving past compliance and instead measuring the value of their interactions through trust and transparency.
3. Generating patient-based evidence through patient registries, mobile apps, and other tools can provide cost-effective, patient-relevant data to inform decision making.
A presentation delivered by Derick Mitchell, IPPOSI CEO at the event to celebrate International Clinical Trials Day on May 10th, 2018 in the Mansion House, Dublin, organised by HRB-CRCI.
This document discusses patient involvement in science, industry, and research. It describes how the Irish Platform for Patient Organizations, Science and Industry (IPPOSI) brings together patient experts and organizations to encourage dialogue and influence decision making. IPPOSI members include patient experts in science and industry. The document also discusses the European Patients' Academy on Therapeutic Innovation (EUPATI) which provides training for patient experts through courses and educational materials. EUPATI aims to facilitate greater patient involvement in research and development.
The document discusses setting up a National Learning Team (NLT) to establish a European Patients' Academy (ENP) in their country to implement the EUPATI program before the end of 2015. Key points discussed include finding champions in patient organizations, academia, and industry; creating effective partnerships between these stakeholders; developing strategic links and growing networks; and emphasizing the benefits EUPATI can provide like training opportunities and access to resources to promote patient public involvement.
Similar to EUPATI – EU: An overview (Eibhlin Mulroe, EUPATI / IPPOSI) (20)
The document discusses patient involvement in pharmaceutical research and development. It describes the European Patients' Academy project, which aims to build patient and public competencies and facilitate their involvement in research. The findings of a qualitative study on pharmaceutical industry professionals' beliefs are presented. While most believed patients should be involved, there were few concrete plans and uncertainty around how to operationalize involvement. Challenges included patients' research knowledge and distrust of industry. Facilitators included increased transparency and revised codes of practice. The discussion focuses on lessons to be learned across public and private research and recommendations for meaningful patient involvement.
This document discusses lessons learned from improving patient involvement in clinical research based on studies of Alkaptonuria (AKU), a rare genetic disorder. It outlines the history and metabolic pathway of AKU and efforts by patient groups to fund pre-clinical research. This included developing a cell and mouse model of AKU, identifying the drug Nitisinone which reduces the main toxin in AKU by 95%, and conducting three clinical trials of Nitisinone across sites in the UK, France and Slovakia. The trials demonstrated promise for treating AKU and improving patients' lives. The document concludes by addressing challenges and solutions for greater collaboration between patient groups, industry and academia.
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.
What do people think about medicines research and development? (Starling, EUP...Nowgen
The document summarizes findings from a large survey and qualitative research exploring public knowledge and attitudes towards medicines research and development (R&D) in six European countries. Key findings include:
- Low overall knowledge about medicines R&D across countries, ranging from 13-30% knowledgeable.
- Varied levels of trust in different R&D stakeholders between countries.
- Greatest interest in learning more about medicines safety, personalized medicine, and drug discovery.
- Preferred sources of information are doctors, websites, and television.
- Suggested focus areas for public engagement include the R&D process, clinical trials, regulations, and patient roles.
Reaching a public audience on medicines development: Anna ZawadaNowgen
"Reaching a public audience on medicines development", presented by Anna Zawada, Agency for Health Technology Assessment at EUPATI 2014 Workshop on 2 April 2014 in Warsaw
What were the success factors in this morning good practices examples, what a...Nowgen
"What were the success factors in this morning good practices examples", Results from Workgroup 2 presented by at EUPATI 2014 Workshop on 2 April 2014 in Warsaw
How to raise interest in medicines development: Results from Workgroup 1Nowgen
The document reports on a workshop discussing strategies to raise public interest in medicines development. Participants were divided into tables to brainstorm potential messaging approaches. The top four issues agreed upon were: 1) knowledge of one's health leads to wellness, 2) people care about food ingredients so they should care about medicine ingredients, 3) patients are essential to medical research, and 4) people can learn about drugs from the independent EUPATI website. Some discussion followed on how to frame each message.
FASS - Presentation and discussion of Good Practice Example: MaliniakNowgen
"FASS - Presentation and discussion of Good Practice Example", presented by Ann Maliniak, Swedish Association of the Pharmaceutical Industry (LIF), Sweden, at EUPATI 2014 Workshop on 2 April 2014 in Warsaw
Working with young people to shape research – reaping the benefits & the impo...Nowgen
"Working with young people to shape research – reaping the benefits & the importance of education in this setting", presented by Jenny Preston, Medicines for Children Research Network, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Patients at the core of medical research & development (Emma Law, Scottish De...Nowgen
"Patients at the core of medical research & development", presented by Emma Law, Scottish Dementia Clinical Research Network, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Travel Clinic Cardiff: Health Advice for International TravelersNX Healthcare
Travel Clinic Cardiff offers comprehensive travel health services, including vaccinations, travel advice, and preventive care for international travelers. Our expert team ensures you are well-prepared and protected for your journey, providing personalized consultations tailored to your destination. Conveniently located in Cardiff, we help you travel with confidence and peace of mind. Visit us: www.nxhealthcare.co.uk
How to Control Your Asthma Tips by gokuldas hospital.Gokuldas Hospital
Respiratory issues like asthma are the most sensitive issue that is affecting millions worldwide. It hampers the daily activities leaving the body tired and breathless.
The key to a good grip on asthma is proper knowledge and management strategies. Understanding the patient-specific symptoms and carving out an effective treatment likewise is the best way to keep asthma under control.
Giloy in Ayurveda - Classical Categorization and SynonymsPlanet Ayurveda
Giloy, also known as Guduchi or Amrita in classical Ayurvedic texts, is a revered herb renowned for its myriad health benefits. It is categorized as a Rasayana, meaning it has rejuvenating properties that enhance vitality and longevity. Giloy is celebrated for its ability to boost the immune system, detoxify the body, and promote overall wellness. Its anti-inflammatory, antipyretic, and antioxidant properties make it a staple in managing conditions like fever, diabetes, and stress. The versatility and efficacy of Giloy in supporting health naturally highlight its importance in Ayurveda. At Planet Ayurveda, we provide a comprehensive range of health services and 100% herbal supplements that harness the power of natural ingredients like Giloy. Our products are globally available and affordable, ensuring that everyone can benefit from the ancient wisdom of Ayurveda. If you or your loved ones are dealing with health issues, contact Planet Ayurveda at 01725214040 to book an online video consultation with our professional doctors. Let us help you achieve optimal health and wellness naturally.
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The purpose of this webcast is to:
Discuss and demonstrate the approaches with array and NGS genotyping methods for star allele calling to prep for downstream analysis.
Following genotyping, explore alternative tertiary workflow concepts in VarSeq to handle PGx reporting.
Moreover, we will include insights users will need to consider when validating their PGx workflow for all possible star alleles and options you have for automating your PGx analysis for large number of samples. Please join us for a session dedicated to the application of star allele genotyping and subsequent PGx workflows in our VarSeq software.
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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
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10. Describe the Cheyne-Stokes breathing
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2. Chapter 36, Ganong’s Review of Medical Physiology, 26th edition
3. Chapter 13, Human Physiology by Lauralee Sherwood, 9th edition
STUDIES IN SUPPORT OF SPECIAL POPULATIONS: GERIATRICS E7shruti jagirdar
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After getting it read you will definitely understand the topic.
Histololgy of Female Reproductive System.pptxAyeshaZaid1
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EUPATI – EU: An overview (Eibhlin Mulroe, EUPATI / IPPOSI)
1. EUPATI
The project is receiving support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115334, resources of which are composed
of financial contribution from the European Union's Seventh Framework Programme (FP7/2007-2013) and EFPIA companies.
An overview
2. In summary
Who are IPPOSI?
EUPATI Ireland
Why get involved in EUPATI?
What is EUPATI all about!
4. IPPOSI Strategy 2012-2014
4
Our Mission
We expedite
development
of and patient
access to
innovative
therapies
through a
unique
partnership of
Patient
Groups,
Industry and
Science
Vision
Patients in Ireland
have prompt access
to new and
developing
innovative therapies
To deliver on our Vision
Our Strategic Priorities
• Bring a patient perspective
to clinical research in Ireland
• Actively influence policy
that impacts on research
and access to innovative
therapies
• Increase understanding of
the work done by IPPOSI
• Source funding to ensure
IPPOSI’s sustainability
12. HTAi
Patient involvement in HTA: What added value?
K.M. Facey Health Economics and HTA, Institute of Health and Wellbeing, University of Glasgow, Glasgow, UK
“there is a need to move from emotive views to finding a way that allows
robust elicitation patients’
perspectives. As happens in the other parts of HTA, a systematic method is
needed, using an explicit analytical approach, and findings need to
scrutinized.”
13. EPF survey on HTA agencies,
decision makers and patients
• Patient involvement in HTA has the most impact in putting
forward patients’ needs in terms of QoL and providing a
real-life context to the use of health technologies; this is
acknowledged by all
• To facilitate patient involvement, HTA agencies and
decision-makers provide access to
• HTA reports/guides/protocols,
• easy-to-read HTA summaries
• – but no training support for patients
Patient organisations need
more capacity to engage on
HTA
15. CLINICAL RESEARCH
in Ireland
“Without a thriving clinical research
culture in Ireland, Irish patients with
severe unmet medical needs will be
deprived of life-saving treatments.”
Report from IPPOSI National Strategic Forum for
Clinical Research
Farmleigh, Dublin, 27 November 2009
16. REPORT INTO THE GENERAL PUBLIC’S ATTITUDES
TOWARDS CLINICAL RESEARCH
Prepared for IPPOSI
by
Drury Research
November 2009
17. Agree v Disagree with Attitudinal
Statements RANKING 1 - 5
26 12 20 12 29 1
50 15 16 5 14
56 14 11 4 14 1
60 17 14 3 5 2
I w ould only participate in
clinical trials if I w as very
sick
I w ould be w illing to supply
personal medical
information for medical
research if it is done in a
confidential manner
I w ould be w illing to donate
blood to be used for clinical
research
I think carrying out clinical
research in I reland w ith the
aim of developing new w ays
to treat many diseases is a
good idea
Strongly agree Agree Neither/nor Disagree Disagree strongly DK
{Base: n=1000, All adults}
19. EUPATI Ireland
The project is receiving support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115334, resources of which are composed
of financial contribution from the European Union's Seventh Framework Programme (FP7/2007-2013) and EFPIA companies.
NLT
20. EUPATI Ireland
National Liason Team
The project is receiving support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115334, resources of which are composed
of financial contribution from the European Union's Seventh Framework Programme (FP7/2007-2013) and EFPIA companies.
Mr. Peter Kelly, Irish Chronic Pain Association
Ms Siobhan Gaynor, Molecular Medicine Ireland and ICRIN
Ms Sinead Duffy, Bayer Healthcare
21. EUPATI Ireland
The project is receiving support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115334, resources of which are composed
of financial contribution from the European Union's Seventh Framework Programme (FP7/2007-2013) and EFPIA companies.
HTA Training Day with National Agency and Patients
January 2014
OUTCOMEREPORTAVAILABLEON
ipposi.ie
Katie Murphy @KatieMurphy1989 Jan 24
@EibhlinMulroe @ipposi thanks for organising a
great,informative session! Looking forward to
forming some action points & moving forward �
Dmitri Wall @DmitriWall Jan 24
At another great @IPPOSI
conference where the NCPE are
discussing health technology
assessment
22.
23. EUPATI
The project is receiving support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115334, resources of which are composed
of financial contribution from the European Union's Seventh Framework Programme (FP7/2007-2013) and EFPIA companies.
The backdrop to the setting up of EUPATI
24. Medical landscape is transforming
at a fast pace
Innovation transforms the lives of
patients with serious, lifelong conditions:
Molecular targets/pathways
Genome sequencing,
Translational research
Personalized medicine
• Small trial populations
• Biomarkers, companion diagnostics
Need for post-marketing data
Health Technology Assessment,
QoL, endpoints, comparators
BUT long term pressure on health
budgets – here to stay
Window of
opportunity
trial design
relationship
between
researchers,
regulators,
industry,
patients
24
25. Patients as partners of research:
More needs to be done!
Rare cancers will never be a priority unless the patients make it
one. Patients themselves must therefore play a larger role in
driving forward the search for therapies. They are able to see
connections that have eluded scientists.
“ „
26. Patient advocates have a key role in
building new environment for R&D
Patient organisations have unique insights into
„real life“ and „real needs“ of patients:
• Gaps research priorities
• Clinical trial design
• Quality of Life measurement
• Real-world access to therapies
• „Value“
• Patient-centered research policy
Training essential to get expertise to contribute to
medicines research & development (R&D) Research subject
Info provider
Advisor
ReviewerReviewer
Co-researcherCo-researcher
Driving forceDriving force
PatientPartner FP7 Project (2010),
www.patientpartner-europe.eu
With more than 200
cancers and >6000 rare
diseases, we need
many qualified patient
experts!
27. Addressing public scrutiny and
distrust of research…
Only 6-12% of cancer patients
participate in clinical studies
75% of Phase II-IV studies delayed due to
slow patient recruitment
Bad image one reason for
delayed generation of
meaningful clinical data
?
Europe has a lot of safeguards
in medicines R&D – but public
image lagging behind
28. Patient advocates working with
regulators…
EMA track record since 2005…
Patients‘ and Consumers‘ Working
Party (PCWP, 34 POs)
Full members of MA Management
Board, COMP (rare diseases), PDCO
(pediatric), CAT (advanced therapies)
Assessment of EPARs,
Package leaflets, safety information
Ad-hoc support in CHMP:
Product assessment, guidelines,
Pharmacovigilance WG, protocol assistance
Speakers and participants at
EMA conferences/workshops .....
AND AT THE NATIONAL LEVEL
... Patient involvement ‚by accident‘
Patient organisations need
more qualified advocates to
engage with regulators
29. Having a patient (advocate) in every
Research Ethics Committee…
• 9.400 EU applications for
clinical studies/year
• 5.000 clinical studies initiated
in EU/year
– 25% multinational
= ~1250 studies/year
– 4.5 Member States on
average per
multinational study
– Single opinion per
country assumed
– For 1250 multinational
studies, more than
5.000 ethics panels with
35.000 panelists needed
Sources: Impact on Clinical Research of European Legislation (ICREL),
Final Report, Feb. 2009, and Rokus de Zeeuw 2010
If patients are to be involved in
RECs on a broad level, we need
more patients who understand
how trials work
30. Patient advocates through
IPPOSI in Ireland working with…
Irish Medicines Board
Health Information and Quality Authority
Department of Health Steering Group on Rare Diseases
Health Service Executive Patient Forum
National Centre for Pharmacoeconomics (HTA)
Patient organisations needmore qualified advocates toengage with regulators
31. Patients want a seat at the table.
Currently, there are many empty seats.
This is why we have
established the
European Patients‘ Academy (EUPATI).
32. http://www.patientsacademy.eu – info@patientsacademy.eu
European Patients’ Academy
on Therapeutic Innovation
The project is receiving support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115334, resources of which are composed
of financial contribution from the European Union's Seventh Framework Programme (FP7/2007-2013) and EFPIA companies.
34. Audiences: advocacy leaders
and the public at large
EUPATI Certificate Training Programme
Academic Modular Certificate Programme
Patient Ambassadors in committees, R&D teams, …
Patient Journalists raising awareness
Patient Trainers for patient communities & networks
100
patient
advocates
12.000
patient
advocates
100.000
individuals
EUPATI Educational Toolbox
Educational tools for patient advocates
Variety of distributable formats: Paper-based booklets,
presentations, eLearning, webinars, videos etc.
EUPATI Internet Library
Patients & lay public at large, e.g. on specific aspects of
the development process of medicines for patients with
low (health) literacy.
Wiki, YouTube, films and/or cartoons
35. Topics of EUPATI Training Courses
(which will also be covered in web library – more info
later today)
Topic areas:
nDiscovery of Medicines & Planning of Medicine Development
nNon-Clinical Testing and Pharmaceutical Development
nExploratory and Confirmatory Clinical Development
nClinical Trials
nRegulatory Affairs, Medicinal Product Safety, Pharmacovigilance
and Pharmaco-epidemiology
nHTA principles and practices
+Patients‘rolesand
responsibilities
35
…and NOT:
develop indication-
or therapy-specific
information!
36. Patients' Academy: up, running and real. Workshop,
5 Sept 2012 and National Liaisons Workshop in March
2013. Warsaw next in April, 2014!
Patients' Academy: up, running and real. Workshop,
5 Sept 2012 and National Liaisons Workshop in March
2013. Warsaw next in April, 2014!
100 participants from 24
countries
Majority patient advocates
12 countries building
national platforms
100 participants from 24
countries
Majority patient advocates
12 countries building
national platforms
36
37. AT
BE
CH
DE
ES
FR
IT
IE
LUX
MT
PL
UK
National EUPATI “National Liaison
Teams” and “National Platforms”
Initiated by “trio” of patient orgs, academia, industry
Patient LEAD and
• make sure EUPATI understands educational
needs in R&D on national level
• disseminate EUPATI’s existing training material
and information on the national level
• raise public awareness & interest about EUPATI
• identify training faculty, logistics and financial
support on the national level
Budget of 9k available to all 12 NLTs to begin work.
38. EUPATI: A paradigm shift in empowering
patients on medicines R&D
Launched Feb ’12, runs for 5 years,
30 consortium members,
PPP of EU Commission and EFPIA
will develop and disseminate
objective, credible, correct knowledge
about medicines R&D
will build competencies
& expert capacity among patients
& public
will facilitate patient involvement in R&D
to support industry, academia, authorities
and ethics committees
39. EUPATI platform complete with training courses,
education, information material in multiple
languages
Good practice guidelines on patient involvement
available and in use
Public conferences and regional workshops will
lead to an extensive expert network established.
12 National Platforms established in 12 countries
Robust strategy on sustainability and political
buy-in
EUPATI by 2017:
Where we want to be.
40. EUPATI can make the difference.
creating the tipping point for patient
engagement in medicines R&D
It‘s for all of us to make it happen.
41. EUPATI NATIONAL LIAISON TEAM UK
GET INVOLVED!
Irene Oldfather, Life Changes Trust Programme Director, Health and
Social Care Alliance Scotland www.alliance-scotland.org.uk
Dr Sue Pavitt, Reader in Applied Health Research, Leeds Institute of
Health Sciences, University of Leeds
http://www.leeds.ac.uk/lihs/
Bella Starling PhD, Director of Public Programmes, Nowgen,
Manchester Academic Health Sciences Centre. www.nowgen.org.uk
Kay Warner, Project Manager, GlaxoSmithKline
http://www.gsk.com/
42. Get to know us!
Web:
www.patientsacademy.eu
Twitter: @eupatients
as well as:
43. For further information: emulroe@ipposi.ie
Sign up for newsletter info@ipposi.ie
Twitter @EibhlinMulroe
@ipposi
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