Webinar of the European Patients' Academy on Therapeutic Innovation (EUPATI) held on 4 Nov 2013 to update participants of its focus groups about project progress, results of the qualitative research, and how the recommendations translate into content production and dissemination activities of the project.
Patient Engagement in Health Economic and Outcomes Research: Current and Future ISPOR Initiatives, presentation from the ISPOR 20th International meeting Philadelphia, May 2015, by the Patient Centered Special Interest Group
Presentation carried out during the EMBC'16 conference in Orlando the 17th of August by Paulo Carvalho and Vicente Traver introducing the LINK project and the results of the first iteration with experts about the future opportunities and challenges for research on personalised health care for cardiovascular disease management.
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
Patient Engagement in Health Economic and Outcomes Research: Current and Future ISPOR Initiatives, presentation from the ISPOR 20th International meeting Philadelphia, May 2015, by the Patient Centered Special Interest Group
Presentation carried out during the EMBC'16 conference in Orlando the 17th of August by Paulo Carvalho and Vicente Traver introducing the LINK project and the results of the first iteration with experts about the future opportunities and challenges for research on personalised health care for cardiovascular disease management.
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
Workshop 6 - Brainstorming & Policy Development session: Training, information and education of MDs
"Sharing expertise: transfer of experience from patient organizations to doctors and between patient
organisations"
Rainald von Gizycki, Retina Europe,
Germany
Conference talk during the IEEE EMBC'16 conference about experiences of a GP in the daily practice about Digital Health Literacy and the real needs. Other authors are M. Traver, Ignacio Basagioti, C. Fernandez-Llatas, and A. Martinez-Millana
The Networked Patient Group: How technology changes the face of patient advocacyjangeissler
"The Networked Patient Group: How technology changes the face of patient advocacy", presented by Jan Geissler (@jangeissler) at European Patient Innovation Summit on 4 Oct 2016
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
Presentation done by V. Traver at EMBC'16 conference in Orlando based on a work carried out by Suleman Atique, Mowafa Hosueh, Luis Fernandez-Luque, Elia Gabarron, Marian Wan, Onkar Singh, Yu-Chuan (Jack) Li and Syed-Abdul Shabbir (main author)
'Open stakeholder meeting on mHealth assessment guidelines'
presentation of the guidelines by Andrew Ruck and Charles Lowe.
For more information visit:
https://ec.europa.eu/digital-single-market/en/news/open-stakeholder-meeting-mhealth-assessment-guidelines-presentations-and-survey
Presentation in the framework of the International Conference "10th anniversary of the Spanish Network of Health Technology Assessment Agencies. Towads patient and public engagement in HTA" Zaragoza 27-28 April 2017
Presentation in the framework of the International Conference "10th anniversary of the Spanish Network of Health Technology Assessment Agencies. Towads patient and public engagement in HTA" Zaragoza 27-28 April 2017
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
Tripartite dimension of interaction of patients, regulators and industry (Jan...jangeissler
Tripartite dimension of interaction of patients, regulators and industry, presented by Jan Geissler as a scene-setting presentation at the EUPATI Workshop on the interaction of patients, regulators and industry on 20 July 2016 in Berlin
European Patients’ Academy on Therapeutic Innovation:Shifting paradigms in ...patvocates
"European Patients’ Academy on Therapeutic Innovation: Shifting paradigms in empowering patients on medical R&D": Presentation by Jan Geissler (Twitter @jangeissler) at the Belgian Association of Clinical Research Professionals (ACRP.be) meeting on 25 Oct 2012
Workshop 6 - Brainstorming & Policy Development session: Training, information and education of MDs
"Sharing expertise: transfer of experience from patient organizations to doctors and between patient
organisations"
Rainald von Gizycki, Retina Europe,
Germany
Conference talk during the IEEE EMBC'16 conference about experiences of a GP in the daily practice about Digital Health Literacy and the real needs. Other authors are M. Traver, Ignacio Basagioti, C. Fernandez-Llatas, and A. Martinez-Millana
The Networked Patient Group: How technology changes the face of patient advocacyjangeissler
"The Networked Patient Group: How technology changes the face of patient advocacy", presented by Jan Geissler (@jangeissler) at European Patient Innovation Summit on 4 Oct 2016
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
Presentation done by V. Traver at EMBC'16 conference in Orlando based on a work carried out by Suleman Atique, Mowafa Hosueh, Luis Fernandez-Luque, Elia Gabarron, Marian Wan, Onkar Singh, Yu-Chuan (Jack) Li and Syed-Abdul Shabbir (main author)
'Open stakeholder meeting on mHealth assessment guidelines'
presentation of the guidelines by Andrew Ruck and Charles Lowe.
For more information visit:
https://ec.europa.eu/digital-single-market/en/news/open-stakeholder-meeting-mhealth-assessment-guidelines-presentations-and-survey
Presentation in the framework of the International Conference "10th anniversary of the Spanish Network of Health Technology Assessment Agencies. Towads patient and public engagement in HTA" Zaragoza 27-28 April 2017
Presentation in the framework of the International Conference "10th anniversary of the Spanish Network of Health Technology Assessment Agencies. Towads patient and public engagement in HTA" Zaragoza 27-28 April 2017
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
Tripartite dimension of interaction of patients, regulators and industry (Jan...jangeissler
Tripartite dimension of interaction of patients, regulators and industry, presented by Jan Geissler as a scene-setting presentation at the EUPATI Workshop on the interaction of patients, regulators and industry on 20 July 2016 in Berlin
European Patients’ Academy on Therapeutic Innovation:Shifting paradigms in ...patvocates
"European Patients’ Academy on Therapeutic Innovation: Shifting paradigms in empowering patients on medical R&D": Presentation by Jan Geissler (Twitter @jangeissler) at the Belgian Association of Clinical Research Professionals (ACRP.be) meeting on 25 Oct 2012
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 2013 Conference: Patient involvement in medicines R&D: Bringing to li...EUPATI
"Patient involvement in medicines R&D: Bringing to life with EUPATI", presented by Jan Geissler, EUPATI Director, at the EUPATI 2013 Conference on 19 April 2013
Professional services delivery management can have strategic
value, when there is link between the level of effectiveness and the efficiency with which services delivery is accomplished and when the project’s outcomes (product or services), can provide overall business value.
Quite often, due to cultural inconsistencies the whole process
can fail. For example: if services delivery requirement(s) change dramatically increases the risk of failure then, it is logical to avoid a decision leading to its ratification.
EUPATI 2013 Conference: Building Knowledge & Competences for Patients’ Involv...EUPATI
EUPATI 2013 Conference: Building Knowledge & Competences for Patients’ Involvement in Medicines R&D, “Bring to life with EUPATI examples”, by Niels Westergaard, PhD, DSc Biopeople, University of Copenhagen, Denmark
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
EUPATI 2013 Conference: Vision on Patient involvement in medicines R&D: Here...EUPATI
"Patient involvement in medicines R&D: Here we are, and where we want to be in 2020" by Nicola Bedlington, Executive Director of European Patients' Forum and Coordinator of the EUPATI project, at the EUPATI 2013 Conference on 19 April 2013.
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
Workshop 5 - Brainstorming & Policy Development session: Social Aspects
"Feedback from the 15 National Conferences on social aspects"
Britta Berglund, Ehlers Danlos, Sweden
Presentation in the framework of the International Conference "10th anniversary of the Spanish Network of Health Technology Assessment Agencies. Towads patient and public engagement in HTA" Zaragoza 27-28 April 2017
A snapshot of EUPATI: Why the educated patient is so vital to success in clin...jangeissler
A snapshot of EUPATI: Why the educated patient is so vital to success in clinical trials - Jan Geissler - EUPATI Director - presented at DIA EuroMeeting on 6 March 2013 in Amsterdam
Involving patients in research what have we done and how did we do it? Jean R. Slutsky, Patient-Centered Outcomes Research Institute (PCORI) Foredrag, Brukermedvirkning i helseforskning, fra ord til handling. Diakonhjemmet Sykehus 4. november 2014.
EU Clinical Trials Regulation - IPPOSI perspectiveipposi
IPPOSI CEO, Dr Derick Mitchell delivered a presentation on the EU Clinical Trials Regulation from the patients' perspective at the 20th International Conference on Pharmaceutical Medicine, Athens, Greece.
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
Drug development and treatment strategies may go hand in hand.EUPATI
How early in the development of a new medicine should the discussion between researchers and patients occur? Can such early strategic interaction really maximize the value of the outcome? In this EUPATI webinar, a pharmaceutical industry researcher and a patient expert will present two cases describing the research questions, their interaction and the outcome of this early collaboration. Join us in listening and discussing two very interesting experiences of successful patient involvement in the development of new medicines.
EUPATI guidances for interaction between Patient organisations and other stak...EUPATI
David Haerry
Increasing patient involvment
EUPATI guidances for interaction between Patient organisations and other stakeholders in medicines development
Researching information needs and beliefs of patients, professionals and the ...EUPATI
"Researching information needs and beliefs of patients, professionals and the public regarding medicines development", presentation held by Bella Starling on 6 March 2013 at DIA EuroMeeting
Ozempic: Preoperative Management of Patients on GLP-1 Receptor Agonists Saeid Safari
Preoperative Management of Patients on GLP-1 Receptor Agonists like Ozempic and Semiglutide
ASA GUIDELINE
NYSORA Guideline
2 Case Reports of Gastric Ultrasound
CDSCO and Phamacovigilance {Regulatory body in India}NEHA GUPTA
The Central Drugs Standard Control Organization (CDSCO) is India's national regulatory body for pharmaceuticals and medical devices. Operating under the Directorate General of Health Services, Ministry of Health & Family Welfare, Government of India, the CDSCO is responsible for approving new drugs, conducting clinical trials, setting standards for drugs, controlling the quality of imported drugs, and coordinating the activities of State Drug Control Organizations by providing expert advice.
Pharmacovigilance, on the other hand, is the science and activities related to the detection, assessment, understanding, and prevention of adverse effects or any other drug-related problems. The primary aim of pharmacovigilance is to ensure the safety and efficacy of medicines, thereby protecting public health.
In India, pharmacovigilance activities are monitored by the Pharmacovigilance Programme of India (PvPI), which works closely with CDSCO to collect, analyze, and act upon data regarding adverse drug reactions (ADRs). Together, they play a critical role in ensuring that the benefits of drugs outweigh their risks, maintaining high standards of patient safety, and promoting the rational use of medicines.
Flu Vaccine Alert in Bangalore Karnatakaaddon Scans
As flu season approaches, health officials in Bangalore, Karnataka, are urging residents to get their flu vaccinations. The seasonal flu, while common, can lead to severe health complications, particularly for vulnerable populations such as young children, the elderly, and those with underlying health conditions.
Dr. Vidisha Kumari, a leading epidemiologist in Bangalore, emphasizes the importance of getting vaccinated. "The flu vaccine is our best defense against the influenza virus. It not only protects individuals but also helps prevent the spread of the virus in our communities," he says.
This year, the flu season is expected to coincide with a potential increase in other respiratory illnesses. The Karnataka Health Department has launched an awareness campaign highlighting the significance of flu vaccinations. They have set up multiple vaccination centers across Bangalore, making it convenient for residents to receive their shots.
To encourage widespread vaccination, the government is also collaborating with local schools, workplaces, and community centers to facilitate vaccination drives. Special attention is being given to ensuring that the vaccine is accessible to all, including marginalized communities who may have limited access to healthcare.
Residents are reminded that the flu vaccine is safe and effective. Common side effects are mild and may include soreness at the injection site, mild fever, or muscle aches. These side effects are generally short-lived and far less severe than the flu itself.
Healthcare providers are also stressing the importance of continuing COVID-19 precautions. Wearing masks, practicing good hand hygiene, and maintaining social distancing are still crucial, especially in crowded places.
Protect yourself and your loved ones by getting vaccinated. Together, we can help keep Bangalore healthy and safe this flu season. For more information on vaccination centers and schedules, residents can visit the Karnataka Health Department’s official website or follow their social media pages.
Stay informed, stay safe, and get your flu shot today!
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.
micro teaching on communication m.sc nursing.pdfAnurag Sharma
Microteaching is a unique model of practice teaching. It is a viable instrument for the. desired change in the teaching behavior or the behavior potential which, in specified types of real. classroom situations, tends to facilitate the achievement of specified types of objectives.
Title: Sense of Smell
Presenter: Dr. Faiza, Assistant Professor of Physiology
Qualifications:
MBBS (Best Graduate, AIMC Lahore)
FCPS Physiology
ICMT, CHPE, DHPE (STMU)
MPH (GC University, Faisalabad)
MBA (Virtual University of Pakistan)
Learning Objectives:
Describe the primary categories of smells and the concept of odor blindness.
Explain the structure and location of the olfactory membrane and mucosa, including the types and roles of cells involved in olfaction.
Describe the pathway and mechanisms of olfactory signal transmission from the olfactory receptors to the brain.
Illustrate the biochemical cascade triggered by odorant binding to olfactory receptors, including the role of G-proteins and second messengers in generating an action potential.
Identify different types of olfactory disorders such as anosmia, hyposmia, hyperosmia, and dysosmia, including their potential causes.
Key Topics:
Olfactory Genes:
3% of the human genome accounts for olfactory genes.
400 genes for odorant receptors.
Olfactory Membrane:
Located in the superior part of the nasal cavity.
Medially: Folds downward along the superior septum.
Laterally: Folds over the superior turbinate and upper surface of the middle turbinate.
Total surface area: 5-10 square centimeters.
Olfactory Mucosa:
Olfactory Cells: Bipolar nerve cells derived from the CNS (100 million), with 4-25 olfactory cilia per cell.
Sustentacular Cells: Produce mucus and maintain ionic and molecular environment.
Basal Cells: Replace worn-out olfactory cells with an average lifespan of 1-2 months.
Bowman’s Gland: Secretes mucus.
Stimulation of Olfactory Cells:
Odorant dissolves in mucus and attaches to receptors on olfactory cilia.
Involves a cascade effect through G-proteins and second messengers, leading to depolarization and action potential generation in the olfactory nerve.
Quality of a Good Odorant:
Small (3-20 Carbon atoms), volatile, water-soluble, and lipid-soluble.
Facilitated by odorant-binding proteins in mucus.
Membrane Potential and Action Potential:
Resting membrane potential: -55mV.
Action potential frequency in the olfactory nerve increases with odorant strength.
Adaptation Towards the Sense of Smell:
Rapid adaptation within the first second, with further slow adaptation.
Psychological adaptation greater than receptor adaptation, involving feedback inhibition from the central nervous system.
Primary Sensations of Smell:
Camphoraceous, Musky, Floral, Pepperminty, Ethereal, Pungent, Putrid.
Odor Detection Threshold:
Examples: Hydrogen sulfide (0.0005 ppm), Methyl-mercaptan (0.002 ppm).
Some toxic substances are odorless at lethal concentrations.
Characteristics of Smell:
Odor blindness for single substances due to lack of appropriate receptor protein.
Behavioral and emotional influences of smell.
Transmission of Olfactory Signals:
From olfactory cells to glomeruli in the olfactory bulb, involving lateral inhibition.
Primitive, less old, and new olfactory systems with different path
New Drug Discovery and Development .....NEHA GUPTA
The "New Drug Discovery and Development" process involves the identification, design, testing, and manufacturing of novel pharmaceutical compounds with the aim of introducing new and improved treatments for various medical conditions. This comprehensive endeavor encompasses various stages, including target identification, preclinical studies, clinical trials, regulatory approval, and post-market surveillance. It involves multidisciplinary collaboration among scientists, researchers, clinicians, regulatory experts, and pharmaceutical companies to bring innovative therapies to market and address unmet medical needs.
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
263778731218 Abortion Clinic /Pills In Harare ,sisternakatoto
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Basavarajeeyam is a Sreshta Sangraha grantha (Compiled book ), written by Neelkanta kotturu Basavaraja Virachita. It contains 25 Prakaranas, First 24 Chapters related to Rogas& 25th to Rasadravyas.
Tom Selleck Health: A Comprehensive Look at the Iconic Actor’s Wellness Journeygreendigital
Tom Selleck, an enduring figure in Hollywood. has captivated audiences for decades with his rugged charm, iconic moustache. and memorable roles in television and film. From his breakout role as Thomas Magnum in Magnum P.I. to his current portrayal of Frank Reagan in Blue Bloods. Selleck's career has spanned over 50 years. But beyond his professional achievements. fans have often been curious about Tom Selleck Health. especially as he has aged in the public eye.
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Introduction
Many have been interested in Tom Selleck health. not only because of his enduring presence on screen but also because of the challenges. and lifestyle choices he has faced and made over the years. This article delves into the various aspects of Tom Selleck health. exploring his fitness regimen, diet, mental health. and the challenges he has encountered as he ages. We'll look at how he maintains his well-being. the health issues he has faced, and his approach to ageing .
Early Life and Career
Childhood and Athletic Beginnings
Tom Selleck was born on January 29, 1945, in Detroit, Michigan, and grew up in Sherman Oaks, California. From an early age, he was involved in sports, particularly basketball. which played a significant role in his physical development. His athletic pursuits continued into college. where he attended the University of Southern California (USC) on a basketball scholarship. This early involvement in sports laid a strong foundation for his physical health and disciplined lifestyle.
Transition to Acting
Selleck's transition from an athlete to an actor came with its physical demands. His first significant role in "Magnum P.I." required him to perform various stunts and maintain a fit appearance. This role, which he played from 1980 to 1988. necessitated a rigorous fitness routine to meet the show's demands. setting the stage for his long-term commitment to health and wellness.
Fitness Regimen
Workout Routine
Tom Selleck health and fitness regimen has evolved. adapting to his changing roles and age. During his "Magnum, P.I." days. Selleck's workouts were intense and focused on building and maintaining muscle mass. His routine included weightlifting, cardiovascular exercises. and specific training for the stunts he performed on the show.
Selleck adjusted his fitness routine as he aged to suit his body's needs. Today, his workouts focus on maintaining flexibility, strength, and cardiovascular health. He incorporates low-impact exercises such as swimming, walking, and light weightlifting. This balanced approach helps him stay fit without putting undue strain on his joints and muscles.
Importance of Flexibility and Mobility
In recent years, Selleck has emphasized the importance of flexibility and mobility in his fitness regimen. Understanding the natural decline in muscle mass and joint flexibility with age. he includes stretching and yoga in his routine. These practices help prevent injuries, improve posture, and maintain mobilit
Webinar: EUPATI Update to participants of the EUPATI Focus Groups - 4 Nov 2013
1. EUPATI Update
to participants of the EUPATI Focus Groups
EUPATI Webinar
on 4 November 2013
- For presentation purposes only, not for further dissemination -
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.
2. Aims of webinar
To provide webinar participants with an overview on the current status
of the EUPATI project
To provide feedback to webinar participants on the findings and
recommendations made from the focus groups that they participated
in at EUPATI events
To provide details of how the findings and recommendations from this
work have informed the development and implementation of the
EUPATI training course for patient advocates
To say thank you for your participation
2
3. Overview of today’s webinar
Topic
Speaker
Progress update on the status of EUPATI
Annamarie Dillon
Findings and recommendations from needs assessment
focus groups
Suzanne Parsons
Content development overview and response to
recommendations from focus groups
Niels Westergaard
Deployment and dissemination overview and response to
recommendations from focus groups
Liuska Sanna
Next steps and questions
Annamarie Dillon
3
4. EUPATI Project Update
4 November 2013
For presentation purposes only, not for further dissemination
5. European Patients' Academy on
Therapeutic Innovation…
Public-Private Partnership of EU Commission and EFPIA
Launched February 2012, runs for 5 years
Patient-led, coordinated by European Patients’ Forum,
and EGAN, EURORDIS, EATG in leadership roles
Will develop and disseminate objective, credible,
correct and up-to-date public knowledge about medicines
R&D
A strong multi-stakeholder consortium of patient
organisations, academia, NGOs and industry –
30 organisations
6. By 2016, the Patients’ Academy
will…
develop and disseminate accessible, well-structured and userfriendly information and education on medicines R&D
build expert capacity by training patient advocates,
and enhancing capacities among patients and the public
create a leading public library on medicines R&D: translated into
7 languages, published under “creative commons license”
facilitate patient involvement in R&D to partner up with
academia,
authorities, industry and ethics committees
THAT WILL LEAD TO
- a paradigm shift in empowering patients and
the public to understand the medicines development
process and how to contribute to it
…we do not
offer indicationor therapyspecific
information!
7. Audiences: Advocacy leaders as
well as the general public
1
2
3
EUPATI Certificate Training Programme
Academic Modular Certificate Programme
Patient Ambassadors in various committees, R&D teams, …
Patient Journalists raising awareness
Patient Trainers for patient communities & networks
EUPATI Educational Toolbox
Educational tools for patient advocates
Variety of distributable formats: Paper-based booklets, ppt
presentations, eLearning, webinars, videos etc.
100
patient
experts
12,000
patient
advocates
EUPATI Internet Library
Patients & the general public, eg, on specific aspects of
the development process of medicines for patients with
little health literacy experience
Wiki, YouTube, films, cartoons, etc.
100,000
individuals
8. Task Forces within EUPATI
Project Secretariat
Network
Implementation
Needs
Assessment,
Gap Analysis
Content
Development
IT Infrastructure
Deployment &
Quality Control
Sustainability
Task Forces
Task Forces
Task Forces
Task Force
2.1 Establishment and
Coordination of the EUPATI
Network
4.1 Medicines development
process from research to
approval
5.1 Functional
specification
Communications
Task Force
2.2 Organisation of EUPATI
Conferences and Regional
Workshops
4.2 Personalized and predictive
medicine
5.2 Implementation of the
signed-off functional
specification
4.3 Drug safety and risk/benefit
assessment of (novel and
existing) medicines
5.3 Support and training
to defined users in
the organisation
4.4 Pharmacoeconomics and
health technology assessment
5.4 Handover of
infrastructure and
hosting of the portal
to EUPATI
2.3 Organisation of National
Liaison Teams to support
other WPs' activities
2.4 Design, management
and maintenance of a
digital communication
platform for all Network
Members
2.5 EUPATI Ethics Panel
4.5 Design and objectives of
clinical trials (& involved
stakeholders)
4.6 Patients' roles and
responsibilities in innovative
medicines development
(4.7) Editorial Board
9. European Patients’ Academy:
General Progress
Website available in all 7 languages, collaboration tools established
Advisory Board meetings ongoing
Ethics Panel established, Ethics Framework finalised
“EUPATI Network” launched, National Liaison teams forming
Communications: Multiple presentations at conferences,
Communications plan in place
First conference held in Rome in March 2013
Needs assessment data analysis underway
10. European Patients’ Academy:
Progress in Work Packages
Monthly EUPATI newsletters now available and active on social
media – join the discussions
10 out of 12 National Liaison Teams have drafted country maps
and have plans to engage individuals and groups on a national
level; April 2014 meeting in Warsaw, P, being planned
Needs assessment fieldwork completed; themes have been
identified and recommendations have been shared within the
project
Content for training course being developed
IT infrastructure and web platform being designed, user testing
will start soon
Selection criteria and application process for training course
being finalised
Examples of best practices / public private partnerships have been
identified, call will continue
12. Overview of needs assessment work
Review Work
Review of existing
information
resources on
medicines
development aimed
at patients and the
public
Review of research
literature on patients’
and the public’s
knowledge, attitudes
and beliefs regarding
medicines development
Online Surveys
General public across 6
European countries (GB,
Spain, Poland, Italy, France
and Germany)
Qualitative Studies
Patient advocates and
expert patients across
Europe
Of patients, public,
patient advocates,
pharmaceutical industry,
clinical research
professionals and policy
makers in UK, ES, PL
470 responses from
patient advocates and
expert patients across
Europe
148 reported current
research involvement
and 98 previous
involvement
125 commented on
PILs
70 involved in
identifying research
priorities
90 member of project
advisory group
Across all sites
Final report
Final report
Country reports
Findings
306 resources
submitted. 230
included in review.
Highest number of
resources covering
drug safety.
Lowest number
covering
personalised and
predictive medicine.
12600 titles and
abstracts reviewed
134 included in review.
Medicines development
(1 study
Personalised and
predictive medicine 52
studies
Medicines safety 28
studies
HTA 10 studies
Clinical trials 40 studies
7003 members of the public
surveyed
6931 responses recorded
Interest in learning more about
medicines developed areas had
a similar pattern in all countries
•Medicines safety
•Personalised and predictive
medicine
•Drug discovery
•HTA
•Clinical trials
•Patients roles and
responsibilities
•Regulation
•Pharmacoeconomics
91 patient advocates
34 members of the public
13 policy makers
20 pharmaceutical
industry representatives
23 Clinical research
professionals / Health
care academics
181participants I total
Reports
Information review
executive summary
and full report,
Interim report in Nov
2012
Evidence summary doc.
Methods and data doc.
Abstracts and interim
report
Final report Oct 2013
Methods and data document
Interim report
12
13. Aims
To explore patient advocates’ attitudes and information needs
regarding medicines development and their involvement in it
Qualitative research approach used:
•
•
Useful if there is little known about an issue
Best way of exploring key stakeholders’ perspectives and understanding and what
an issue means to them
13
14. Recruitment
EUPATI meeting participants (Regional workshop; NLT meeting;
EUPATI Conference)
Information sheet and consent form
Conference organisers collected
•
•
•
•
Organisation type
Disease area
Geographical scope
Experience of medicines development
14
15. Sampling
Key sampling criteria – Patient organisation with a National, European
or International focus
Reported experience of medicines development (some experience
versus no experience)
15
16. Focus group topic guide
Medicines development experience
How patient advocates support patients’ awareness of and
involvement in medicines development
Patient advocates information, training and support needs to increase
patients’ awareness of and involvement in medicines development
•
•
For patient advocates
For patients at large
Barriers and facilitators to developing and / or improving patient
information
16
17. Focus groups undertaken
5 FGs at regional workshop in Frankfurt, September 2012
1 FG at NLT meeting in Barcelona, March 2013
2 FGs at EUPATI conference in Rome, April 2013
53 patient advocates took part overall
17
18. Key Themes
Role of patient advocates in general and in relation to medicines
development
Beliefs about patient involvement in the medicines development
process
Beliefs about information needs regarding the medicines development
process
•
•
•
Training course content
Training course format
Additional areas which EUPATI Should cover
Beliefs about the quality and trustworthiness of the training and
information produced by EUPATI
18
19. Role of patient advocates in general
Multi-faceted role
•
•
•
•
•
Support patients – day-to-day symptom management
Awareness raising of condition
Producing and disseminating information
Managing patient expectations regarding new treatments
Involvement in research
19
20. Role of patient advocates in research
As participants
Recruiting participants
Providing advice about research participation
Facilitating links between doctors, patients, scientists and the
pharmaceutical industry
Influencing on a regulatory level
Being co-researchers
•
•
•
•
Organisers
Funders
Influencing research priorities
Developing patient information
20
21. Role of patient advocates in research
As participants - ‘I also took part in a study and we…only time I saw
the doctor was one evening, had a doctor and study nurse explain the
study. And then I had to go to the study nurse every time’
Recruiting participants - ‘I've participated in a short term clinical trial
myself but then I spent most of my time, like five years helping other
patients get into clinical trials’.
Providing advice about participation – ‘We added all the clinical
trials which are going on and we informed the patient from the early
beginning what it means being part of a clinical trial. And now for our
organisation we have the same, we are working together with our
registry and they are all the specialists, the researchers; and we can
provide all our patients with ongoing trials’
21
22. Role of patient advocates in medicines
development
Research involvement just one of the many roles played by patient
advocates
Need for realism and recognition of how patients can incorporate
playing an active role in medicine R&D into their many other roles
Importance of clarifying and communicating the roles that patients can
play in medicines development
Relationships are vitally important – everybody (including patients,
industry and academia) needs training in how to communicate with
each other, work together and respect one another’s perspectives
Feeling that industry can be unapproachable
Health professional still act as the gatekeeper to industry for many
patients
22
23. Role of patient advocates in medicines
development
Relationships - All the times they [pharmaceutical companies] forget
to talk with the patients’ organisations first’
Perceptions of industry - I was with a pharmaceutical company in
Germany about a year ago, and they were developing a new
medication. They wouldn’t give us any information. They wouldn’t let
us anywhere near it. No cameras, nothing. They said it was all
commercially sensitive’.
Health professional as gatekeeper to industry - ‘Sometimes,
depends on the physicians. How do they inform the patients? If they
are open to information, they do follow the path of education on that. If
they do not inform them, they just don’t know what they are going
through. So it’s patients’ position depends on many other factors, not
just physicians’ approach…But in general, it’s basically still in the
hands of physicians, how they prepare patients for that occasion.’
23
24. Beliefs about patient involvement in
medicines development
Some patient advocates/expert patients want to be professionalised,
others don't
•
Feeling amongst some that having to take an accredited course could
be a barrier.
•
“If I don't do it, I won't be seen as an expert, but I already am”.
Importance of patients’ knowledge about their own conditions being
taken into account and valued
•
“I agree you have to professionalise otherwise you don’t score an effect”
‘Patient groups are our expert patients’
Patients’ needs and expectations regarding involvement may vary
depending on their condition and their prior experiences of
involvement in medicines development
Different needs of patient advocates depending on the condition they
represent
•
‘There are different needs behind different diseases’
24
25. Information should be…
Accurate and up-to-date
Quick and easy to navigate
Easy to judge that it is high quality
Developed by a credible source which is trustworthy, pan-European
and driven by patients
Quality stamp – impartial, trustworthy information
Jargon free
Simple, easy to understand and ‘straight to the point’
25
26. Training courses content
Increasing content knowledge will increase patients’ confidence in
getting involved in medicines development
•
Support and training to work effectively work with industry and other
stakeholders essential, eg, training in influencing skills
“Rome wasn't built in a day”: a gradual approach is necessary to
what is essentially a culture change
‘What we need to do is try to educate our patient representatives to feel at home in
this kind of tables and boards. So the people can consider them as peers.’
‘Just like magic bullets are not always evident in medicines development, a training
course alone is not going to ‘solve’ misconceptions and myths and help people to
learn how to work effectively with one another.’
“Pick and mix”: Need for training about medicines R&D expressed
but they do not necessarily want to be trained in all aspects.
Advocates should be informed of their rights as patients
•
‘The patient group should advocate also and promote patient’s rights because
although patients might not have the knowledge on innovative medicines and
development in the medicines scene but they have to be well informed of their rights
26
27. Training courses content
Further information required on:
Science behind / scientific aspects of studies eg, HTA, Drug safety,
Benefits and risks of involvement
Importance of defining roles for patients in medicines development
Empowering and supporting patients to become involved and engaged in
medicines development and to judge whether information is useful
Transparent information about the results of trials
Patient-reported outcomes
How the cost of medicines is determined
How pharmaceutical companies decide where to invest their resources
Scientific terminology
•
‘I don’t have a scientific background at all, so when we try and get into discussions
with scientists or pharma-companies or whoever it is that is dealing with drug
development, be it governmental bodies or regulatory agencies, we lack this
vocabulary. We lack the basic scientific knowledge that empowers us to be able to
direct things in the way we want’.
27
28. Training courses format
Face to face elements provide “validation”; however, there is a danger of
“decay” - not being able to use training soon after its delivery.
Importance of communicating the roles that patients can play in medicines
development
Expert level courses can be difficult to follow: importance of prior preparation
and guidelines for speakers
Importance of refresher courses in a rapidly changing area
For elements of the course to be delivered by fellow patient advocates
•
‘Patients believe more the experience from their peers.’
Case studies are useful:
• From basic research to post-marketing
• Examples of successful/unsuccessful involvement in research
• To allow patient advocates to learn from each other
28
29. Delivery of training courses
Importance of using virtual methods of delivery
29
30. Recommendations to content
development team
Degree of emphasis placed on some modules compared to others
That the time devoted to each module is clarified and communicated
both to patients and to those developing the module
Roles of patients within the medicines development process
That the training course syllabus should more precisely define or
describe the roles of patients in the medicines development process or
where they don’t currently exist, what such roles might be
That the current roles that patients have played within the medicines
development process are documented and communicated within the
training course – Examples of current good practice in involvement
That patients with experience of involvement in medicines development
are able to contribute to the teaching of the Expert Level course
30
31. Recommendations to content
development team
Quality, credibility and impartiality of the information and training
produced by EUPATI
To ensure that EUPATI content is viewed as credible and trustworthy
that the process of producing, reviewing, assessing and user testing
EUPATI content should be clearly outlined and made available
Support and training for partnership working between patient
advocates, industry and other key stakeholders
To ensure that the course enables participants to have ‘hands on’
practice of the course content
31
32. Recommendations to content
development team
Recommendations on course content
That course content clearly describes patients’ roles and responsibilities
within medicines development
Current low awareness but high interest levels in personalised /
stratified medicine suggest that this is an area of great interest
Content on the roles of the various key stakeholders in medicines
development will be important to include as greater knowledge of this will
facilitate greater patient involvement in medicines development
Importance of course covering how patients can be involved in early
research and development, eg, in setting research priorities
Patient advocates are particularly interested in how to interpret clinical
research evidence. This is an area of importance for the course
32
33. Recommendations to deployment and
dissemination team
Recommendations on application process for expert level training
course
Importance of ensuring that the course application process is as
inclusive as possible, enabling as wide a range of participants in terms of
their experience of medical research and medicines development, their
perspectives and the condition they represent to take part
33
34. Work Package 3 team
University of Manchester
Bella Starling – WP3 lead
Suzanne Parsons – WP3 Project Manager
Su-Gwan Tham – WP3 Project Assistant
GlaxoSmithKline
Kay Warner – WP3 co-lead
Novo Nordisk
Christine Mullan-Jensen – WP3 Deputy Co-lead
EGAN / GAUK
Kim Wever
Celine Lewis
Amgen, Genzyme, Roche, AstraZeneca, VFA
34
35. Get to know us!
Web:
www.patientsacademy.eu
Twitter: @eupatients
as well as:
36. Building Knowledge & Capacities for
Patients’ Involvement in Medicines
R&D
Niels Westergaard, PhD, DSc
Biopeople
University of Copenhagen
Denmark
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.
37. Audiences: Advocacy leaders as
well as the general public
1
2
3
EUPATI Certificate Training Programme
Academic Modular Certificate Programme
Patient Ambassadors in various committees, R&D teams, …
Patient Journalists raising awareness
Patient Trainers for patient communities & networks
EUPATI Educational Toolbox
Educational tools for patient advocates
Variety of distributable formats: Paper-based booklets, ppt
presentations, eLearning, webinars, videos etc.
100
patient
experts
12,000
patient
advocates
EUPATI Internet Library
Patients & the general public, eg, on specific aspects of
the development process of medicines for patients with
little health literacy experience
Wiki, YouTube, films, cartoons, etc.
100,000
individuals
38.
39.
40. First version of the syllabus: 133 Topics
F2F and eLearning
•2 x 4 days F2F
•240 h of eLearning
Topics:
Topics:
Heavy: 2-6 h
Heavy: 2-6 h
or
or
Light: up to 2 h
Light: up to 2 h
45. WP6 Objectives
To implement the EUPATI expert, education and information
programmes at European and national levels with the three patient
audiences: 100 patient experts, 12,000 patient advocacy leaders and
100,000 patients at large
To disseminate the availability of the programmes widely
To assure high quality standards in development and implementation
of training content and courses
To monitor and evaluate on an on-going basis the quality and impact
of the programmes’ delivery
46. WP6 Activities
Development and implementation of Communication Strategy for
dissemination of programmes
Programme roll out for all 3 EUPATI audiences
Monitoring and evaluation on an on-going basis; the quality and
impact of the programmes’ delivery (online tools, surveys, focus
groups, interviews)
48. Progress update
Communication strategy being drafted – to be completed by end of
November
Audience 1 - Patient Experts:
Programme of F2F training component being developed
Recruitment procedure being drafted – recruitment to be launched in
January 2014
•
•
49. Recruitment Audience 1
Eligibility
Individual Employee of a patient organisation who does not have the condition
represented by the patient organisation
Employee of a patient organisation who has the condition represented by the
patient organisation
Volunteer of a patient organisation who does not have the condition
represented by the patient organisation
Volunteer of a patient organisation who has the condition represented by the
patient organisation
Patient with a chronic and/or lifelong condition who is not affiliated to a patient
organisation and who participates in policy/projects/activities/committees/etc.
to represent his/her personal experience as patient and/or the perspective of a
patient group
Family member of a patient with a chronic and/or lifelong condition who is not
affiliated to a patient organisation and who participates to
policy/projects/activities/committees/etc. to represent the experience of his/her
relative and/or the perspective of a patient group.
OPEN to ALL EUROPEAN COUNTRIES
50. Recruitment Audience 1
Selection criteria
1)
Individual motivation
2)
Commitment to complete training
3)
Commitment to use and apply learning
4)
Good knowledge of English
1)
Experience of being involved in medicines research and development
2)
Experience related to the three EUPATI profiles
3)
Country of origin – Open to all Europe
4)
Disease area
5)
Being a patient/informal carer
51. Selection procedure
1)
Review of compliance with eligibility criteria + completeness of
application package (WP6)
2)
Selection done by ad-hoc Committee consisting of 5 members: 3
representatives of the EUPATI Consortium (1 patient organisation, 1
academia and 1 industry), one member of the EP and one member of
the PAB.
3)
Applications shortlisted to be revised independently by each member
4)
F2F meeting to decide final assessment of applications and selection
5)
Communication to all applicants on the result (WP6).
52. Next steps and questions
Web:
www.patientsacademy.eu
Twitter: @eupatients
as well as: