This document provides an overview and update of the work being done by IPPOSI, the Irish Platform for Patient Organisations, Science and Industry. It discusses several initiatives including a citizens' jury on the future use of genomics, public and patient involvement training, digital health developments, and the European Health Data Space. Key activities highlighted include engaging patients and the public to provide input on important issues, advocating for patient representation, and raising awareness of the benefits of health information sharing. The document outlines opportunities for collaborative work between IPPOSI members, the public, and other stakeholders on priority areas like health data, innovation, and patient involvement.
What you need to know about the Pharmacovigilance guidelines for companies marketing drugs in India. A concise overview of the six modules in the Guidance Document and the responsibilities of the Marketing Authorization Holders.
Adverse Events and Serious Adverse Events - Katalyst HLSKatalyst HLS
Introduction to Adverse Events & Serious Adverse Events in Pharmacovigilance and Drug Safety in Pharmaceuticals, Bio-Pharmaceuticals, Medical Devices, Cosmeceuticals and Foods.
Contact:
"Katalyst Healthcares & Life Sciences"
South Plainfield, NJ, USA
info@KatalystHLS.com
EBM Is the ability to access, asses and apply the best evidence from systematic research information to daily clinical problems after integrating them with the physician's experience and patient's value.
What you need to know about the Pharmacovigilance guidelines for companies marketing drugs in India. A concise overview of the six modules in the Guidance Document and the responsibilities of the Marketing Authorization Holders.
Adverse Events and Serious Adverse Events - Katalyst HLSKatalyst HLS
Introduction to Adverse Events & Serious Adverse Events in Pharmacovigilance and Drug Safety in Pharmaceuticals, Bio-Pharmaceuticals, Medical Devices, Cosmeceuticals and Foods.
Contact:
"Katalyst Healthcares & Life Sciences"
South Plainfield, NJ, USA
info@KatalystHLS.com
EBM Is the ability to access, asses and apply the best evidence from systematic research information to daily clinical problems after integrating them with the physician's experience and patient's value.
The global patient engagement solutions market size stood at around USD 11.8 billion in 2019 and is projected to reach USD xx billion by 2028, exhibiting a CAGR of xx% during the forecast period.
The market for patient engagement solutions is mainly driven by the increasing utilization of electronic health records for patient-centric care and the adoption of mobile health devices. According to a survey conducted by the NHS in 2019, approximately 92.0% of patients feel assured in self-managing treatment.
Market Drivers
Factors such as the growing burden of chronic diseases and a rise in the geriatric population have led to the adoption of patient engagement solutions worldwide. For instance, in 2017, according to CDC statistics, 1.3 million new cases of diabetes were recorded in the US alone. In response to the growing number of diabetic patients, companies are focusing on the development of patient-centric engagement solutions. For example, in June 2019, Allina Health launched a patient-centric engagement solution platform for improving the Diabetes Self-Management Education (DSME) program. This enables diabetic self-care clinical services, particularly for those located in remote locations. Moreover, programs such as these help in cost evaluation, operational effectiveness, and clinical outcomes.
Government support is expected to drive the adoption of patient engagement solutions in the coming years. For instance, in 2018, the FDA established the Patient and Caregiver Connection program. The program was aimed to foster engagement with patients, patient advocates, and caregivers throughout the evaluation and surveillance of medical devices.
Visit https://insights10.com/ for more healthcare industry insights.
Connect with us @ info@insights10.com
Regulatory Medical Writing: The Challenges of Writing Patient Narratives Cognibrain Healthcare
Patient/Safety narratives are important documents of clinical study reports writing and pharmacovigilance activities. They are written to report deaths, serious adverse events, adverse events of special clinical interest, and any such events in a clinical trial of the drug.
This is for doctors, nurses, or anyone in the medical profession, also for engineers and managers in IT. Start learning #digitalhealth with #HL7 #FHIR!
"Hierarchies of Evidence" is an important but problematic concept for medical professionals to understand as it underpins their capacity to be effective practitioners and researchers.
“Regulatory writing department at Turacoz have the expertise to develop various regulatory documents such as Investigator Brochures (IBs), Protocols, Clinical Study Reports (CSRs), Common Technical Documents (CTDs) and pharmacovigilance documents such as Periodic Safety Update Reports (PSURs) and Risk Management Plans (RMPs). In these slides, we have presented an overview on Periodic safety update reports (PSURs) and also the guidelines such GVP modules and ICH E2c. We have also discussed the changes from old PSUR format to new Periodic Benefit-Risk Evaluation Report (PBRER) format.”
discussing all aspects of evidence based medicine, Introduction
History of EBM
Need of EBM
Steps to practice
Discussion - advantages/disadvantages/critical analysis
Principles of essentiality
Principles of voluntariness, informed consent and community agreement
Principles of non-exploitation
Principles of privacy and confidentiality
Principles of precaution and risk minimisation
Principles of professional competence
Principles of accountability and transparency
The global patient engagement solutions market size stood at around USD 11.8 billion in 2019 and is projected to reach USD xx billion by 2028, exhibiting a CAGR of xx% during the forecast period.
The market for patient engagement solutions is mainly driven by the increasing utilization of electronic health records for patient-centric care and the adoption of mobile health devices. According to a survey conducted by the NHS in 2019, approximately 92.0% of patients feel assured in self-managing treatment.
Market Drivers
Factors such as the growing burden of chronic diseases and a rise in the geriatric population have led to the adoption of patient engagement solutions worldwide. For instance, in 2017, according to CDC statistics, 1.3 million new cases of diabetes were recorded in the US alone. In response to the growing number of diabetic patients, companies are focusing on the development of patient-centric engagement solutions. For example, in June 2019, Allina Health launched a patient-centric engagement solution platform for improving the Diabetes Self-Management Education (DSME) program. This enables diabetic self-care clinical services, particularly for those located in remote locations. Moreover, programs such as these help in cost evaluation, operational effectiveness, and clinical outcomes.
Government support is expected to drive the adoption of patient engagement solutions in the coming years. For instance, in 2018, the FDA established the Patient and Caregiver Connection program. The program was aimed to foster engagement with patients, patient advocates, and caregivers throughout the evaluation and surveillance of medical devices.
Visit https://insights10.com/ for more healthcare industry insights.
Connect with us @ info@insights10.com
Regulatory Medical Writing: The Challenges of Writing Patient Narratives Cognibrain Healthcare
Patient/Safety narratives are important documents of clinical study reports writing and pharmacovigilance activities. They are written to report deaths, serious adverse events, adverse events of special clinical interest, and any such events in a clinical trial of the drug.
This is for doctors, nurses, or anyone in the medical profession, also for engineers and managers in IT. Start learning #digitalhealth with #HL7 #FHIR!
"Hierarchies of Evidence" is an important but problematic concept for medical professionals to understand as it underpins their capacity to be effective practitioners and researchers.
“Regulatory writing department at Turacoz have the expertise to develop various regulatory documents such as Investigator Brochures (IBs), Protocols, Clinical Study Reports (CSRs), Common Technical Documents (CTDs) and pharmacovigilance documents such as Periodic Safety Update Reports (PSURs) and Risk Management Plans (RMPs). In these slides, we have presented an overview on Periodic safety update reports (PSURs) and also the guidelines such GVP modules and ICH E2c. We have also discussed the changes from old PSUR format to new Periodic Benefit-Risk Evaluation Report (PBRER) format.”
discussing all aspects of evidence based medicine, Introduction
History of EBM
Need of EBM
Steps to practice
Discussion - advantages/disadvantages/critical analysis
Principles of essentiality
Principles of voluntariness, informed consent and community agreement
Principles of non-exploitation
Principles of privacy and confidentiality
Principles of precaution and risk minimisation
Principles of professional competence
Principles of accountability and transparency
Connected health data meets the people: Diversity, Standards, and Trustchronaki
Using health data in a connected world requires new competencies, a personal digital health compass calibrated to individual personalities and needs. Patients and clinicians able to collect and manage data, data-operational informatics professionals able to analyze data, and cutting-edge researchers, innovators, and educators able to apply knowledge, will take learning health systems to the next level.
In this EFMI-HL7 event using innovative technology and surprises to engage the audience, we will discuss strategies for empowering and activating people to engage, share and use their health data. We will point to diversity, trust and open standards like HL7 FHIR to open up access and capacities to manage data safely for patients, care-givers, and the health system.
The Maturing Telemedicine Infrastructure in Denmark: Building the Human Capital, Morten Bruun-Rasmussen, CEO MEDIQ
Health Professional Education in Biomedical & Health Informatics: the EFMI AC2 approach, Professor John Mantas, University of Athens, Greece, EFMI Past President
Digital health literacy: a necessity for Activating Citizens, Professor Anne Moen, University of Oslo, Norway, VP for IMIA, European Federation for Medical Informatics
“Internet of People”: Elements of Trust and Risk, Eva Turk, DNVGL.
Workforce meets volumes of electronic information: Why and how HL7 FHIR creates value for stakeholders in learning health systems. Doug Fridsma, President and CEO, American Medical Informatics Association, US
2022 World Day Brain Event - IPPOSI Presentationipposi
Laura Kavanagh, Research and Advocacy Manager in IPPOSI, gave a presentation on World Brain Day 2022 at an event hosted by the Neurological Alliance of Ireland.
Healthcare Outcomes Conference, RCSI, Feb 2018ipposi
IPPOSI CEO Derick Mitchell delivered this presentation entitled 'Outcomes of relevance to patients' at the first National Healthcare Outcomes conference in the Royal College of Surgeons, Ireland in February 2018
Derick Mitchell_Biobanking from the patient perspective.pdfipposi
IPPOSI CEO Derick Mitchell presented the patient perspective on biobanking at the 2023 WECAN Academy for Cancer Patient Advocates on July 2nd, 2023 in Frankfurt, Germany.
Mental Health - Leading the data sharing charge with a rights-based approachipposi
Frankie Prendergast's (Digital Health Applications Programme Manager in St Patrick's Mental Health Services) presentation on health information at the 2023 IPPOSI Conference.
Muiris O'Connor, Assistant Secretary of the Department of Health, presented key government updates on health information at the 2023 IPPOSI Conference Building a Data Sharing Health Sector in Ireland.
Clinical Workflow for Capture of Patient Registry Dataipposi
Clare Harney, Managing Director of HD Health, gave a lightning presentation on managing data for patient registries at the 2023 IPPOSI Conference on Building a Data Sharing Health Sector in Ireland.
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.
Patient Centricity in Value-based healthcare, Sept 2022ipposi
IPPOSI CEO Derick Mitchell delivered a presentation as part of the RCSI Value Based Healthcare Webinar on Patient Centricity on Sept 18th, 2022.
The Future of Value Based Healthcare in Ireland webinar series is run by The RCSI Healthcare Outcomes Research Centre, Janssen Sciences Ireland UC and Novartis Ireland.
In October 2020, IPPOSI published a membership engagement survey on its draft 4-year strategy. This slide deck captures the summary results of the survey.
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
On 14 November 2019, our Research and Advocacy Manager, Laura Kavanagh delivered this presentation on ‘the Drug Iceberg report’ to participants at the Retina Roundtable. The Roundtable kicked off a three-day conference around the topic of ‘Evidence Generation for Access to Innovative Therapies’. IPPOSI was asked to outline the access to medicine challenges faced by patients in Ireland, including the health technology assessment (HTA) and post-HTA processes.
Overview of the Haemophilia Patient Record System. Presentation by Declan Noone, President, European Haemophilia Consortium, originally presented at the IPPOSI Annual Conference 2019
Acute scrotum is a general term referring to an emergency condition affecting the contents or the wall of the scrotum.
There are a number of conditions that present acutely, predominantly with pain and/or swelling
A careful and detailed history and examination, and in some cases, investigations allow differentiation between these diagnoses. A prompt diagnosis is essential as the patient may require urgent surgical intervention
Testicular torsion refers to twisting of the spermatic cord, causing ischaemia of the testicle.
Testicular torsion results from inadequate fixation of the testis to the tunica vaginalis producing ischemia from reduced arterial inflow and venous outflow obstruction.
The prevalence of testicular torsion in adult patients hospitalized with acute scrotal pain is approximately 25 to 50 percent
TEST BANK for Operations Management, 14th Edition by William J. Stevenson, Ve...kevinkariuki227
TEST BANK for Operations Management, 14th Edition by William J. Stevenson, Verified Chapters 1 - 19, Complete Newest Version.pdf
TEST BANK for Operations Management, 14th Edition by William J. Stevenson, Verified Chapters 1 - 19, Complete Newest Version.pdf
Knee anatomy and clinical tests 2024.pdfvimalpl1234
This includes all relevant anatomy and clinical tests compiled from standard textbooks, Campbell,netter etc..It is comprehensive and best suited for orthopaedicians and orthopaedic residents.
New Directions in Targeted Therapeutic Approaches for Older Adults With Mantl...i3 Health
i3 Health is pleased to make the speaker slides from this activity available for use as a non-accredited self-study or teaching resource.
This slide deck presented by Dr. Kami Maddocks, Professor-Clinical in the Division of Hematology and
Associate Division Director for Ambulatory Operations
The Ohio State University Comprehensive Cancer Center, will provide insight into new directions in targeted therapeutic approaches for older adults with mantle cell lymphoma.
STATEMENT OF NEED
Mantle cell lymphoma (MCL) is a rare, aggressive B-cell non-Hodgkin lymphoma (NHL) accounting for 5% to 7% of all lymphomas. Its prognosis ranges from indolent disease that does not require treatment for years to very aggressive disease, which is associated with poor survival (Silkenstedt et al, 2021). Typically, MCL is diagnosed at advanced stage and in older patients who cannot tolerate intensive therapy (NCCN, 2022). Although recent advances have slightly increased remission rates, recurrence and relapse remain very common, leading to a median overall survival between 3 and 6 years (LLS, 2021). Though there are several effective options, progress is still needed towards establishing an accepted frontline approach for MCL (Castellino et al, 2022). Treatment selection and management of MCL are complicated by the heterogeneity of prognosis, advanced age and comorbidities of patients, and lack of an established standard approach for treatment, making it vital that clinicians be familiar with the latest research and advances in this area. In this activity chaired by Michael Wang, MD, Professor in the Department of Lymphoma & Myeloma at MD Anderson Cancer Center, expert faculty will discuss prognostic factors informing treatment, the promising results of recent trials in new therapeutic approaches, and the implications of treatment resistance in therapeutic selection for MCL.
Target Audience
Hematology/oncology fellows, attending faculty, and other health care professionals involved in the treatment of patients with mantle cell lymphoma (MCL).
Learning Objectives
1.) Identify clinical and biological prognostic factors that can guide treatment decision making for older adults with MCL
2.) Evaluate emerging data on targeted therapeutic approaches for treatment-naive and relapsed/refractory MCL and their applicability to older adults
3.) Assess mechanisms of resistance to targeted therapies for MCL and their implications for treatment selection
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
Recomendações da OMS sobre cuidados maternos e neonatais para uma experiência pós-natal positiva.
Em consonância com os ODS – Objetivos do Desenvolvimento Sustentável e a Estratégia Global para a Saúde das Mulheres, Crianças e Adolescentes, e aplicando uma abordagem baseada nos direitos humanos, os esforços de cuidados pós-natais devem expandir-se para além da cobertura e da simples sobrevivência, de modo a incluir cuidados de qualidade.
Estas diretrizes visam melhorar a qualidade dos cuidados pós-natais essenciais e de rotina prestados às mulheres e aos recém-nascidos, com o objetivo final de melhorar a saúde e o bem-estar materno e neonatal.
Uma “experiência pós-natal positiva” é um resultado importante para todas as mulheres que dão à luz e para os seus recém-nascidos, estabelecendo as bases para a melhoria da saúde e do bem-estar a curto e longo prazo. Uma experiência pós-natal positiva é definida como aquela em que as mulheres, pessoas que gestam, os recém-nascidos, os casais, os pais, os cuidadores e as famílias recebem informação consistente, garantia e apoio de profissionais de saúde motivados; e onde um sistema de saúde flexível e com recursos reconheça as necessidades das mulheres e dos bebês e respeite o seu contexto cultural.
Estas diretrizes consolidadas apresentam algumas recomendações novas e já bem fundamentadas sobre cuidados pós-natais de rotina para mulheres e neonatos que recebem cuidados no pós-parto em unidades de saúde ou na comunidade, independentemente dos recursos disponíveis.
É fornecido um conjunto abrangente de recomendações para cuidados durante o período puerperal, com ênfase nos cuidados essenciais que todas as mulheres e recém-nascidos devem receber, e com a devida atenção à qualidade dos cuidados; isto é, a entrega e a experiência do cuidado recebido. Estas diretrizes atualizam e ampliam as recomendações da OMS de 2014 sobre cuidados pós-natais da mãe e do recém-nascido e complementam as atuais diretrizes da OMS sobre a gestão de complicações pós-natais.
O estabelecimento da amamentação e o manejo das principais intercorrências é contemplada.
Recomendamos muito.
Vamos discutir essas recomendações no nosso curso de pós-graduação em Aleitamento no Instituto Ciclos.
Esta publicação só está disponível em inglês até o momento.
Prof. Marcus Renato de Carvalho
www.agostodourado.com
Explore natural remedies for syphilis treatment in Singapore. Discover alternative therapies, herbal remedies, and lifestyle changes that may complement conventional treatments. Learn about holistic approaches to managing syphilis symptoms and supporting overall health.
Report Back from SGO 2024: What’s the Latest in Cervical Cancer?bkling
Are you curious about what’s new in cervical cancer research or unsure what the findings mean? Join Dr. Emily Ko, a gynecologic oncologist at Penn Medicine, to learn about the latest updates from the Society of Gynecologic Oncology (SGO) 2024 Annual Meeting on Women’s Cancer. Dr. Ko will discuss what the research presented at the conference means for you and answer your questions about the new developments.
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!
1. Welcome to the IPPOSI Round Table of Companies
June 16th 2022
2.
3.
4. EDUCATE INVOLVE IMPACT
IPPOSI Pillars
Creating ‘spaces’ where patients and the public are equal partners
IPPOSI Pillars
5. Types of ‘Spaces’
• Citizen Juries
• Digital Discussions + Conferences
• Patient ‘Dragon’s Den’
• Matchmaking of patient
advocates with PPI opportunities
• Patient Education Programme +
‘Patients as Educators’
Priority Areas
• Access to Innovation
• Patient/Public Involvement
• Health Data
6. The Future Use of Genomics
Jennifer Moran
Citizens’ Jury Coordinator
Health Data Priority Area
7. Citizens’ Jury 2021 – Access to Health Information
- Presentation to Slaintecare (July)
- Presentation to the HRB (Sept)
- Dissemination to DoH, HSE, HIQA etc.
- Report on patient perspective (Nov)
- References to Citizens’ Jury (Citizens’
Assembly, HIQA Advisory Group report,
eHealth Ireland, Oireachtas spotlight)
- Joint Focus Group with HIQA with jurors
(Dec)
IMPACT
July
2021+
8. Citizens’ Jury 2022 – Future Use of Genomics
- Multi-stakeholder Oversight Panel
- Over 500 expressions of interest
- Strong media coverage (radio,
newspapers, social media)
- CSO-representative juror selection
- 1 visually impaired juror
- 3 unsolicited requests to address jury
- 3 mission questions
- 4 Jury case studies
- 1 witness briefing
- IPPOSI, RDI, ICS letter proposing
juror join Steering Group on Genetics
and Genomics
PHASE ONE
(Jan-May+)
Funded by IPPOSI Reserves, unrestricted grants from
Roche Ireland, Pfizer Ireland, Irish Society of Human Genetics
9. Citizens’ Jury 2022 – Future Use of Genomics
- 1 juror information booklet
- 1 pre-jury information session
- Full jury attendance on day 1
- 1 main facilitator (Dave Dunn)
- 5 small group facilitators
- 1 rapporteur (June Shannon)
- 5 IPPOSI scribes
- 4 juror session summaries
- 1 Face-to-face in progress for 25
June
Pre-survey
Post-survey
Poll
Poll
Poll
Poll
Poll
Poll
Poll
Poll
Poll
PHASE TWO
(May-June)
Mid- survey
10. RCSI Deliberative Dialogues (Sept 2022+)
• HRB-funded - organised by the RCSI University’s Public Patient
Involvement (PPI) Office
• In-depth discussion of citizens’ jury verdict via a series of follow-on
workshops with diverse population-based groups
11. Citizens’ Jury 2 – Future Use of Genomics (2022)
- RCSI Deliberative Dialogues
- 1 presentation to National Steering
Group
- 1 presentation to the Joint
Committee and health-interested
politicians
- 1 presentation to the DoH
- Selection of video clips from jurors
- 1 briefing paper for policy-makers
- 1 toolkit for patient organisations
- 1 media information pack
- 1 parliamentary question on
genomics
- 1 budget pre-submission on
IMPACT
(Sept+)
- 1 jury verdict report co-authored by
jury committee with rapporteur
- 1 report on patient perspective on
the future use of genomics (member
survey and discussion)
- IPPOSI observations of the jury
process and comments on the jury
verdict
- Juror experience surveys and
interviews (material for
communications)
- Selection of juror delegation to
attend events and speak to media
- IPPOSI public speaking/media
PHASE
THREE
(July-Sept)
13. COVID-19
Access to vaccines
and boosters
Allocation of new
COVID-19 treatments
Informal coalition of patient organisations
Letters to the Minister, NIAC and HSE
Identification of patient and public
involvement roles
Participation in COVID network
14. Access to innovation
Access to medicines, including
rare disease medicines
Genetics and genomics policy
EU policy
Advocacy around DoH/IPHA agreement
Participation in multi-stakeholder dialogue
around rare disease medicines with
Minister and DoH
Outreach to HSE National Genetics and
Genomics Steering Group
Responses to EU consultations
15. Patient & Public Involvement
Laura Kavanagh,
Research & Advocacy Manager
16. IPPOSI PPI HUB
Launched website with cases in
October 2021
Published report on findings from
mapping
Plan to survey patient and provider
experience of involvement
17. PPI in the health service
IPPOSI is Vice-Chair of the National Patients’
Forum since January 2022, for two years
Monitoring work initiated in DoH in 2019 to
develop a public partners policy
Monitoring work initiated within HSE in
2019 to develop a PPI roadmap
Monitoring work initiated in 2022 to
develop a co-design approach
What can we realistically and
practically do?
Where are the opportunities?
What can we learn from others?
How can we design PPI that works
for the patient?
18. What can we do together around IPPOSI priority areas
(health data, innovation, PPI)?
CAPTURE ATTITUDES: Learn more about the patient perspective on key issues, invite a
discussion where there is no clear (or no known) perspective on an issue
CHAMPION PPI: Advocate for patient voices to be represented at important tables, both
internally (in companies, in IPHA) and externally (in spaces where there is dialogue between
state agencies and industry, when appropriate)
FOCUS ON EVIDENCE-BASED APPROACHES: Call for more investment and infrastructure
around health information, to facilitate better real-world data collection and outcomes
monitoring
19. Patient Education +
Irish EUPATI National Platform
Dr. Caroline Whelan
Education & Outreach Coordinator
20. Why Patient Education
& Training?
Patient & Public Involvement (PPI) is gaining
momentum in Ireland & is of increasing relevance
to many health stakeholders
Impact of patient education in R&D (IPPOSI /
EUPATI) evident in ability of graduates to work
effectively with partners, agencies, authorities
e.g. IPPOSI Matchmaking Patient Advocates
with PPI Opportunities
IPPOSI graduates moving from 'educated patients'
to 'educators/mentors’
e.g. PEP2021 Peer Mentors & Patient Dragons Den
with UL & RSCI
Patient Education Programme Graduation
March 7th, 2021
21. Re-imagining the IPPOSI
Patient Education offering
IPPOSI Patient Education
2017, 2019, 2021 IPPOSI programmes
• 3 Modules:
• Clinical Trials
• Regulatory Affairs
• Health Technology Assessment
• Partners: UCD, TCD, HPRA, NCPE
• 11-months e-learning & peer-to-peer
networking
https://www.ipposi.ie/our-work/education/patient-education-programme
Future 2023 IPPOSI programme
• Refine existing content
• Develop new topics – Research Ethics in Ireland
• And new approaches – hybrid in 2023
Work with
• IPPOSI Education & Training Advisory Board;
• Academic/Regulatory Partners;
• Projects – CHAMELEONS & PPI Ignite;
• EUPATI & its fellows, IPPOSI graduates, Irish ENP
& others
Next call for applications
Autumn 2022!
22. IPPOSI Patient Capacity Building Programme 2021-2023
Technical Workshop Topics
• Social Media - Twitter & LinkedIn
• Social Media - Facebook for Charities
• E-Advocacy: Creating an effective
Strategy for social media campaigns
• Comms for Political & Public Affairs
• Basic Podcasting
• Make better podcasts, Sept. 2022
Substantive Workshop Topics
• Making a patient submission to
the National Centre for
Pharmaco-economics (NCPE),
Autumn 2022
From Pilot to Programme!
23. EUPATI National Platform
in Ireland
• 70 members (patient, science,
industry)
• 50 graduates of IPPOSI Patient
Education Programme
• A growing community of patients
to engage with partners, agencies,
authorities
https://ppihub.ipposi.ie/
• CASES - Explore examples of PPI from across
Ireland. Please contribute!
• PARTNERS - Connect with partners from the
patient community. See their profiles.
• RESOURCES – Latest news on PPI
24. Join Irish EUPATI National Platform
Engage with IPPOSI Matchmaking
Get involved in Patient Education
What can we
do together?
25. BREAK
Next up - ‘Educate, Involve, Impact - the role of IPPOSI in health innovation'
30. There’s a lot happening in the digital
health / health information space in
Ireland and in Europe:
What is important for IPPOSI members?
What our (joint) response(s) should be?
31. What are the key developments?
DoH health information legislation (autumn 2022)
HIQA health information policy considerations (‘consent model’ plus)
NCH implementation of electronic health record (and portal)
DoH/HSE refresh of the eHealth Strategy (autumn 2022)
Slaintecare implementation (objective 10)
EU Health Data Space (2030 commitment)
WHICH
developments are
most importance
for IPPOSI
members, and
WHY?
WHAT can
we do
together?
32. Health information bill (DoH)
National health
information
guardian
National health
information
centre
Rights-based
approach
fit-for-purpose national health
information system”
“empowers our frontline health staff to
share information for patient care”
“information follows the patient”
“increase in the availability of data for
research purposes”
“legislation is a stepping stone, not the
destination”
AUTUMN 2022
33. What is the likely direction of travel?
Ireland is likely to focus on achieving a smaller number of bigger
projects in the coming years
Irish policy is likely to mirror European policy -summary care
records and e-prescribing
The Regional Health Area (RHA) agenda is likely to influence digital
health
Cybersecurity is likely to be a priority.
34. EU Health Data Space
European Data Space is one of the priorities of the European Commission 2019-
2025. A European Health Data Space (EHDS) is one of several data spaces.
Joint Action Towards the European Health Data Space (TEDHAS) established in
2021 https://tehdas.eu/
European Commission proposal for a regulation on the Health Data Space (public
consultation ongoing)
Three objectives to improve cross-border care; unlock potential of EU-wide data;
and support research and innovation
European Digital and Health Data Board to be established, with patient
representation
€810million in funding to build the necessary infrastructure
EU DIGITAL DECADE
DIGITAL COMPASS
All individuals living in
the EU will have access
to their own health
information (medical
records) by 2030
35. What can we be doing?
• Raising awareness of the
benefits of health information
among our members and the
public
• Communicating patient (and
public) expectations around
access and control, as well as
use
• Calling for patient (and public)
roles in strategy, governance,
oversight, and better
engagement approaches
MEMBERS
Advise strategy
Disseminate
Advocate
IPPOSI
Draft materials
Coordinate
Advocate
PUBLIC
Share stories
Champion
Advocate
Terminology; briefing notes,
factsheets, case studies; FAQs; patient
stories ; thought leader blogs; citizen
jurors verdicts
Position papers (on right to access);
proposals (on portal functionality);
dialogue (on stakeholder consensus)
Advocate for public representation;
transparent selection; supports and
training; public consultation tools
Editor's Notes
KOL in PPI across research, policy, services and innovation.
We educate & train patients to provide their input in an informed, evidenced way
We are passionate about preparing researchers and healthcare professionals to develop partnerships with patients
Action packed / engaging / left wanting more
6 sessions
2 hours each – 12 hours in total
2 witnesses at each of first four sessions:
Last 2 sessions for deliberations and voting
Facilitated by Michael
Supported by co-facilitators
Observed by rapporteur
Observed by dcu and bias sub-group
Allow some witnesses to be selected by jurors
Make some sessions face to face
Worry less about keeping to two hours
Action packed / engaging / left wanting more
6 sessions
2 hours each – 12 hours in total
2 witnesses at each of first four sessions:
Last 2 sessions for deliberations and voting
Facilitated by Michael
Supported by co-facilitators
Observed by rapporteur
Observed by dcu and bias sub-group
Allow some witnesses to be selected by jurors
Make some sessions face to face
Worry less about keeping to two hours
rare diseases and children in July 2021, on general pharmaceutical legislation in Dec 2021, on European Health Data Space in Dec 2021 & July 2022
80+ cases of public or patient involvement, 40+ organisations, institutions, companies, 20+ public partner profiles from the IPPOSI patient education programme alumni
10 opportunities by 4 companies, PPI activity at the global level is not mirrored at the national level
Need to identify entry points
Engage in cross-company dialogue
Create the conditions for involvement
What can we realistically and practically do?
Where are the opportunities?
What can we learn from others?
How can we design PPI that works for the patient? Co-design the process
- Work out what we can offer.
- Get the conversation started. Learn from others who are doing PPI if we can
- Invite patients into the conversation so that we design PPI in a way that is patient-friendly/apprioriate from the start
If there are particular areas where you think a patient voice should be present, but is not, then we would like to hear from you. We have a community of patients who have completed our education programme and they are keen to share their perspectives. We sometimes don’t hear about the opportunities until it is too late.
In light of COVID, we all have a joint responsibility to push for greater digital infrastructure. We have seen how important it is to the functioning of a modern health system. But change/transition is slow. It helps if as many stakeholders as possible are sharing the same message. We can all benefit from greater digital infrastructure.
Equally, if there are topics where you think a collective patient perspective does not currently exist, but would be valuable, then again, please feel free to get in touch. In the past, we have convened roundtables around a range of topics for our 100+ patient member organisations.
If there are particular areas where you think a patient voice should be present, but is not, then we would like to hear from you. We have a community of patients who have completed our education programme and they are keen to share their perspectives. We sometimes don’t hear about the opportunities until it is too late.
In light of COVID, we all have a joint responsibility to push for greater digital infrastructure. We have seen how important it is to the functioning of a modern health system. But change/transition is slow. It helps if as many stakeholders as possible are sharing the same message. We can all benefit from greater digital infrastructure.
Equally, if there are topics where you think a collective patient perspective does not currently exist, but would be valuable, then again, please feel free to get in touch. In the past, we have convened roundtables around a range of topics for our 100+ patient member organisations.
15 mins ‘ 1130’1145
Our goal today is to answer these two questions.
HIQA = four pillars: engagement, legislation, governance, technical and operational capacity, IPPOSI on advisory board and we will respond to consultation
NCH = business case approved, work started in advance of 2024 opening, just under two years to deliver, digital health team in contact with IPPOSI and we will feedback on PPI strategy for digital health
eHealth strategy = needs a refresh, in touch with Health infrastructure team in DoH and we will feedback on draft strategy during consultation period
Proposal for a regulation around the health data space, we will be submitting a response to the open consultation
Community patients’ management system
Establish a “Data sharing” principle
Review IHI, and move to PPSN as the key identifier from the public side, the IHI will be used from the system side. People will be asked for PPSN to be identified by the system.
Important that guardian is supported by a public panel
Important that there are public and patient voices in the governance structures of the centre
Important that individuals-citizens are offered better rights to their information than FOI or DPA
TEDHAS What is secondary use? What is (pseudo) anonymisation? What is the best legal framework? How does this fit with GDPR? How do we operationalise our vision? What is quality data? How should citizens be involved?
DIGITAL COMPASS – describes the Commission´s vision for digital transformation – government-public services, skills, business, infrastructures
better exchange and access to different types of health data (genomics data, data from patient registries, electronic health records, etc.)
NOTE: Following the Ordinary Legislative Procedure (OLP), the EHDS proposal will now be sent to and discussed by the European Parliament and the Council, EUCOPE will follow closely the legislative debate and engage with relevant stakeholders in the process. Regarding the Parliament, it is expected that ENVI, ITRE or IMCO will obtain the file, while the Council Configuration is most likely to be taken up by either EPSCO or TTE.