SlideShare a Scribd company logo
Patient and Public Involvement in
Shaping Health Policy and
Services in Ireland North and
South
A FOCUS ON RARE DISEASES
Philip Watt: Rare Disease Task Force (Republic of Ireland)
Fiona McLaughlin: Northern Ireland Rare Disease Partnership
What is PPI?
World Health Organisation (1978)
‘People have the right of duty to participate individually an collectively in the planning and
implementation of their healthcare’
Irish Health Research Forum (2015)
‘By involvement we mean a process by which people are enabled to become actively and
genuinely involved in defining the issues of concern to them, in making decisions about
factors that affect their lives and implementing policies , in planning, developing and
delivering services and taking action to achieve change’
John Saddler, NHS Confederation (2015)
‘Sharing decision-making with patients and the wider community can improve care, help
internal NHS collaboration and engage vulnerable people’
Terry McGeeney MD (2012)
‘The lack of patient engagement is the Achilles' Heel of health care delivery in the US’
Patient and Public Involvement (PPI)
The Journey of Patient Groups
1. Development of Effective networks
 Northern Ireland Rare Disease Partnership
 Rare Disease Task Force
2. The National Rare Disease Plans in the UK (2013) and NI Implementation
Plan (2015)
3. The National Rare Disease Plan in Ireland (2014)
4. Joint commitments in both plans to N/S cooperation
5. Increased cooperation of civil servants on a North/South basis
Launch of NI Rare Disease
Implementation Plan, 2015
Rare Disease Day, 29 February
North/South Rare Disease
Conferences
The Impact of Cross Border PPI on Rare
Diseases
Exchange of information and good practice (for example North-South
conferences on rare diseases alternately held in Belfast and Dublin)
Awareness raising - Rare diseases now ‘on the agenda’.
Identification of best potential for increased co-operation, for example:
- Health Research (very advanced in some areas)
- Transplant services (lung and Kidney programmes)
- Clinical genetic services (diagnosis and counselling)
- Clinical trials for new and innovative therapies
What now?
Implementation plans
Personal & public involvement
Brexit?
Funding

More Related Content

What's hot

Integrating a rights based approach (rba) in managing hiv and aids stigma thr...
Integrating a rights based approach (rba) in managing hiv and aids stigma thr...Integrating a rights based approach (rba) in managing hiv and aids stigma thr...
Integrating a rights based approach (rba) in managing hiv and aids stigma thr...
National Organization of Peer Educators (NOPE Kenya)
 
Nfhk2011 outi karvonen_parallel5
Nfhk2011 outi karvonen_parallel5Nfhk2011 outi karvonen_parallel5
Nfhk2011 outi karvonen_parallel5
NFHK2011
 
Jim mc manus fostering positive relations sociology and public health seminar...
Jim mc manus fostering positive relations sociology and public health seminar...Jim mc manus fostering positive relations sociology and public health seminar...
Jim mc manus fostering positive relations sociology and public health seminar...
Professor Jim McManus AFBPsS,FFPH,CSci, FRSB, CPsychol
 
1 sun 1600 voss 2011 august nhpc cdc event
1 sun 1600 voss 2011 august nhpc cdc event1 sun 1600 voss 2011 august nhpc cdc event
1 sun 1600 voss 2011 august nhpc cdc event
CDC NPIN
 
Itoca Research Policy Linkages In Agriculture Sector
Itoca Research   Policy Linkages In Agriculture SectorItoca Research   Policy Linkages In Agriculture Sector
Itoca Research Policy Linkages In Agriculture Sector
powerinbetween
 
Integrated Care
Integrated CareIntegrated Care
Integrated Care
Healthcare DENMARK
 
Jane grimson
Jane grimsonJane grimson
Jane grimson
3GDR
 
Presentation_Pregel - Practical Approaches to Disability Inclusion in Healthcare
Presentation_Pregel - Practical Approaches to Disability Inclusion in HealthcarePresentation_Pregel - Practical Approaches to Disability Inclusion in Healthcare
Presentation_Pregel - Practical Approaches to Disability Inclusion in Healthcare
CORE Group
 
A healthy community is a resilient community boh 2010
A healthy community is a resilient community boh 2010A healthy community is a resilient community boh 2010
A healthy community is a resilient community boh 2010
Jefferson County Public Health
 
Theo Georghiou: Health and social care at the end of life
Theo Georghiou: Health and social care at the end of lifeTheo Georghiou: Health and social care at the end of life
Theo Georghiou: Health and social care at the end of life
Nuffield Trust
 
Mental Health Forum May 2016 Walter Kmet
Mental Health Forum May 2016 Walter KmetMental Health Forum May 2016 Walter Kmet
Mental Health Forum May 2016 Walter Kmet
Walter Kmet
 
Teaching Prevention 2013: Wright Presentation
Teaching Prevention 2013: Wright PresentationTeaching Prevention 2013: Wright Presentation
Teaching Prevention 2013: Wright Presentation
aptr1001
 
World health day 2018
World health day 2018World health day 2018
World health day 2018
KEM Hospital
 
The evidence base for integrated care
The evidence base for integrated careThe evidence base for integrated care
The evidence base for integrated care
The King's Fund
 
Age of socialized public health
Age of socialized public health Age of socialized public health
Age of socialized public health
Jeny Shrestha
 
New Rules About Safer Sex
New Rules About Safer SexNew Rules About Safer Sex
New Rules About Safer Sex
Jim Pickett
 
Ensuring continuity of essential health services: A critical priority during ...
Ensuring continuity of essential health services: A critical priority during ...Ensuring continuity of essential health services: A critical priority during ...
Ensuring continuity of essential health services: A critical priority during ...
WHO Regional Office for the Eastern Mediterranean
 
Anna Dixon: transforming the delivery of health and social care
Anna Dixon: transforming the delivery of health and social careAnna Dixon: transforming the delivery of health and social care
Anna Dixon: transforming the delivery of health and social care
The King's Fund
 
Cancer in Africa - a Rights-based Public Health Approach
Cancer in Africa - a Rights-based Public Health ApproachCancer in Africa - a Rights-based Public Health Approach
Cancer in Africa - a Rights-based Public Health Approach
UNDP Eurasia
 
Addressing hearing loss through a health care systems approach
Addressing hearing loss through a health care systems approachAddressing hearing loss through a health care systems approach
Addressing hearing loss through a health care systems approach
Albert Domingo
 

What's hot (20)

Integrating a rights based approach (rba) in managing hiv and aids stigma thr...
Integrating a rights based approach (rba) in managing hiv and aids stigma thr...Integrating a rights based approach (rba) in managing hiv and aids stigma thr...
Integrating a rights based approach (rba) in managing hiv and aids stigma thr...
 
Nfhk2011 outi karvonen_parallel5
Nfhk2011 outi karvonen_parallel5Nfhk2011 outi karvonen_parallel5
Nfhk2011 outi karvonen_parallel5
 
Jim mc manus fostering positive relations sociology and public health seminar...
Jim mc manus fostering positive relations sociology and public health seminar...Jim mc manus fostering positive relations sociology and public health seminar...
Jim mc manus fostering positive relations sociology and public health seminar...
 
1 sun 1600 voss 2011 august nhpc cdc event
1 sun 1600 voss 2011 august nhpc cdc event1 sun 1600 voss 2011 august nhpc cdc event
1 sun 1600 voss 2011 august nhpc cdc event
 
Itoca Research Policy Linkages In Agriculture Sector
Itoca Research   Policy Linkages In Agriculture SectorItoca Research   Policy Linkages In Agriculture Sector
Itoca Research Policy Linkages In Agriculture Sector
 
Integrated Care
Integrated CareIntegrated Care
Integrated Care
 
Jane grimson
Jane grimsonJane grimson
Jane grimson
 
Presentation_Pregel - Practical Approaches to Disability Inclusion in Healthcare
Presentation_Pregel - Practical Approaches to Disability Inclusion in HealthcarePresentation_Pregel - Practical Approaches to Disability Inclusion in Healthcare
Presentation_Pregel - Practical Approaches to Disability Inclusion in Healthcare
 
A healthy community is a resilient community boh 2010
A healthy community is a resilient community boh 2010A healthy community is a resilient community boh 2010
A healthy community is a resilient community boh 2010
 
Theo Georghiou: Health and social care at the end of life
Theo Georghiou: Health and social care at the end of lifeTheo Georghiou: Health and social care at the end of life
Theo Georghiou: Health and social care at the end of life
 
Mental Health Forum May 2016 Walter Kmet
Mental Health Forum May 2016 Walter KmetMental Health Forum May 2016 Walter Kmet
Mental Health Forum May 2016 Walter Kmet
 
Teaching Prevention 2013: Wright Presentation
Teaching Prevention 2013: Wright PresentationTeaching Prevention 2013: Wright Presentation
Teaching Prevention 2013: Wright Presentation
 
World health day 2018
World health day 2018World health day 2018
World health day 2018
 
The evidence base for integrated care
The evidence base for integrated careThe evidence base for integrated care
The evidence base for integrated care
 
Age of socialized public health
Age of socialized public health Age of socialized public health
Age of socialized public health
 
New Rules About Safer Sex
New Rules About Safer SexNew Rules About Safer Sex
New Rules About Safer Sex
 
Ensuring continuity of essential health services: A critical priority during ...
Ensuring continuity of essential health services: A critical priority during ...Ensuring continuity of essential health services: A critical priority during ...
Ensuring continuity of essential health services: A critical priority during ...
 
Anna Dixon: transforming the delivery of health and social care
Anna Dixon: transforming the delivery of health and social careAnna Dixon: transforming the delivery of health and social care
Anna Dixon: transforming the delivery of health and social care
 
Cancer in Africa - a Rights-based Public Health Approach
Cancer in Africa - a Rights-based Public Health ApproachCancer in Africa - a Rights-based Public Health Approach
Cancer in Africa - a Rights-based Public Health Approach
 
Addressing hearing loss through a health care systems approach
Addressing hearing loss through a health care systems approachAddressing hearing loss through a health care systems approach
Addressing hearing loss through a health care systems approach
 

Viewers also liked

LIVING WITH RARE DISEASES
LIVING WITH RARE DISEASESLIVING WITH RARE DISEASES
LIVING WITH RARE DISEASES
Dr.Suja Somanadhan
 
2009 Convegno Malattie Rare Marazova [22 01]
2009 Convegno Malattie Rare Marazova [22 01]2009 Convegno Malattie Rare Marazova [22 01]
2009 Convegno Malattie Rare Marazova [22 01]
cmid
 
The need for data sharing in Rare disease research
The need for data sharing in Rare disease researchThe need for data sharing in Rare disease research
The need for data sharing in Rare disease research
Paola De Castro
 
Rare Disease Day Webinar
Rare Disease Day WebinarRare Disease Day Webinar
Rare Disease Day Webinar
Path of the Blue Eye Project
 
Rare Disease Data Linkage plan 2017 - IRDiRC 2017 presentation
Rare Disease Data Linkage plan 2017 - IRDiRC 2017 presentation Rare Disease Data Linkage plan 2017 - IRDiRC 2017 presentation
Rare Disease Data Linkage plan 2017 - IRDiRC 2017 presentation
Leiden University Medical Center
 
Rare World: Towards Technology for Rare Diseases
Rare World: Towards Technology for Rare DiseasesRare World: Towards Technology for Rare Diseases
Rare World: Towards Technology for Rare Diseases
Haley MacLeod
 
Rare disease day 2011 highlights
Rare disease day 2011 highlightsRare disease day 2011 highlights
Rare disease day 2011 highlights
EURORDIS - Rare Diseases Europe
 
Julian Little & Beth Potter: Rare Disease Day 2016 Conference
Julian Little & Beth Potter: Rare Disease Day 2016 Conference Julian Little & Beth Potter: Rare Disease Day 2016 Conference
Julian Little & Beth Potter: Rare Disease Day 2016 Conference
Canadian Organization for Rare Disorders
 
Application of PBPK to Drug Development in Rare Diseases - SMi ADEMT Conferec...
Application of PBPK to Drug Development in Rare Diseases - SMi ADEMT Conferec...Application of PBPK to Drug Development in Rare Diseases - SMi ADEMT Conferec...
Application of PBPK to Drug Development in Rare Diseases - SMi ADEMT Conferec...
Pau A. MPharm
 
Rare Diseases Video Portal (RD Videos)
Rare Diseases Video Portal (RD Videos)Rare Diseases Video Portal (RD Videos)
Rare Diseases Video Portal (RD Videos)
Carlos Luis Sánchez Bocanegra
 
The challenge of small data
The challenge of small dataThe challenge of small data
The challenge of small data
Stephen Senn
 

Viewers also liked (11)

LIVING WITH RARE DISEASES
LIVING WITH RARE DISEASESLIVING WITH RARE DISEASES
LIVING WITH RARE DISEASES
 
2009 Convegno Malattie Rare Marazova [22 01]
2009 Convegno Malattie Rare Marazova [22 01]2009 Convegno Malattie Rare Marazova [22 01]
2009 Convegno Malattie Rare Marazova [22 01]
 
The need for data sharing in Rare disease research
The need for data sharing in Rare disease researchThe need for data sharing in Rare disease research
The need for data sharing in Rare disease research
 
Rare Disease Day Webinar
Rare Disease Day WebinarRare Disease Day Webinar
Rare Disease Day Webinar
 
Rare Disease Data Linkage plan 2017 - IRDiRC 2017 presentation
Rare Disease Data Linkage plan 2017 - IRDiRC 2017 presentation Rare Disease Data Linkage plan 2017 - IRDiRC 2017 presentation
Rare Disease Data Linkage plan 2017 - IRDiRC 2017 presentation
 
Rare World: Towards Technology for Rare Diseases
Rare World: Towards Technology for Rare DiseasesRare World: Towards Technology for Rare Diseases
Rare World: Towards Technology for Rare Diseases
 
Rare disease day 2011 highlights
Rare disease day 2011 highlightsRare disease day 2011 highlights
Rare disease day 2011 highlights
 
Julian Little & Beth Potter: Rare Disease Day 2016 Conference
Julian Little & Beth Potter: Rare Disease Day 2016 Conference Julian Little & Beth Potter: Rare Disease Day 2016 Conference
Julian Little & Beth Potter: Rare Disease Day 2016 Conference
 
Application of PBPK to Drug Development in Rare Diseases - SMi ADEMT Conferec...
Application of PBPK to Drug Development in Rare Diseases - SMi ADEMT Conferec...Application of PBPK to Drug Development in Rare Diseases - SMi ADEMT Conferec...
Application of PBPK to Drug Development in Rare Diseases - SMi ADEMT Conferec...
 
Rare Diseases Video Portal (RD Videos)
Rare Diseases Video Portal (RD Videos)Rare Diseases Video Portal (RD Videos)
Rare Diseases Video Portal (RD Videos)
 
The challenge of small data
The challenge of small dataThe challenge of small data
The challenge of small data
 

Similar to Philip Watt, Cystic Fibrosis Ireland and Christine Collins NI Rare Diseases Partnership

Think kidneys strategic clinical network webinar final - 111214
Think kidneys   strategic clinical network webinar final - 111214Think kidneys   strategic clinical network webinar final - 111214
Think kidneys strategic clinical network webinar final - 111214
Renal Association
 
APA 2015_LM Brady involving cyp in research_03.15
APA 2015_LM Brady involving cyp in research_03.15APA 2015_LM Brady involving cyp in research_03.15
APA 2015_LM Brady involving cyp in research_03.15
Louca-Mai Brady
 
Ageing and public health campaigns march 2013
Ageing and public health campaigns march 2013Ageing and public health campaigns march 2013
Ageing and public health campaigns march 2013
Roger O'Sullivan
 
Introduction to dental Public health.ppt
Introduction to dental Public health.pptIntroduction to dental Public health.ppt
Introduction to dental Public health.ppt
SafuraIjaz2
 
John Gillies: Health and Social Care Integration in Scotland 2018
John Gillies: Health and Social Care Integration in Scotland 2018John Gillies: Health and Social Care Integration in Scotland 2018
John Gillies: Health and Social Care Integration in Scotland 2018
STN IMPRO
 
The challenge of diabetes: how do we respond?
The challenge of diabetes: how do we respond?The challenge of diabetes: how do we respond?
The challenge of diabetes: how do we respond?
EU_CHRODIS
 
Overview of tackling non-communicable diseases in England
Overview of tackling non-communicable diseases in EnglandOverview of tackling non-communicable diseases in England
Overview of tackling non-communicable diseases in England
Dr Justin Varney
 
4º Fórum da Saúde Suplementar - Lewis Sandy
4º Fórum da Saúde Suplementar - Lewis Sandy4º Fórum da Saúde Suplementar - Lewis Sandy
4º Fórum da Saúde Suplementar - Lewis Sandy
CNseg
 
Health Impact Assessment of E-Medicine and Norway's Healthcare Policy Reform
Health Impact Assessment of E-Medicine and Norway's Healthcare Policy ReformHealth Impact Assessment of E-Medicine and Norway's Healthcare Policy Reform
Health Impact Assessment of E-Medicine and Norway's Healthcare Policy Reform
Wyiki Wyone
 
Lecture 1 Public health administration in the Pacific Islands.pptx
Lecture 1 Public health administration in the Pacific Islands.pptxLecture 1 Public health administration in the Pacific Islands.pptx
Lecture 1 Public health administration in the Pacific Islands.pptx
LencyMuna1
 
Jude Stansfield
Jude StansfieldJude Stansfield
Jude Stansfield
theCALMzone
 
Presentation - Together advancing health and well-being for all at all ages
Presentation - Together advancing health and well-being for all at all agesPresentation - Together advancing health and well-being for all at all ages
Presentation - Together advancing health and well-being for all at all ages
WHO Regional Office for Europe
 
Childhood Disability - Hans Forssberg
Childhood Disability - Hans ForssbergChildhood Disability - Hans Forssberg
Childhood Disability - Hans Forssberg
Teletón Paraguay
 
Global Health Exchange Fellowship Programme EVALUATION REPORT 2016
Global Health Exchange Fellowship Programme EVALUATION REPORT 2016Global Health Exchange Fellowship Programme EVALUATION REPORT 2016
Global Health Exchange Fellowship Programme EVALUATION REPORT 2016
Charlotte Tulinius
 
Gill Rowlands Heath Literacy - Making it Everybody's Business
Gill Rowlands Heath Literacy - Making it Everybody's BusinessGill Rowlands Heath Literacy - Making it Everybody's Business
Gill Rowlands Heath Literacy - Making it Everybody's Business
HLGUK
 
What Is Public Health In Fulton County
What Is Public Health In Fulton CountyWhat Is Public Health In Fulton County
What Is Public Health In Fulton County
Ronjula Dasher
 
Running Head CHRONIC KIDNEY DISEASE RESOURCES 1CHRONIC KIDNE.docx
Running Head CHRONIC KIDNEY DISEASE RESOURCES 1CHRONIC KIDNE.docxRunning Head CHRONIC KIDNEY DISEASE RESOURCES 1CHRONIC KIDNE.docx
Running Head CHRONIC KIDNEY DISEASE RESOURCES 1CHRONIC KIDNE.docx
todd271
 
303 moving forward on mipaa s beales
303 moving forward on mipaa  s beales303 moving forward on mipaa  s beales
303 moving forward on mipaa s beales
HelpAge International
 
Ifg htalk research-advocacy
Ifg htalk research-advocacyIfg htalk research-advocacy
Ifg htalk research-advocacy
HealthlinkWorldwide
 
Chronic Disease Prevention Policy development in Australia
Chronic Disease Prevention Policy development in AustraliaChronic Disease Prevention Policy development in Australia
Chronic Disease Prevention Policy development in Australia
Maximilian de Courten
 

Similar to Philip Watt, Cystic Fibrosis Ireland and Christine Collins NI Rare Diseases Partnership (20)

Think kidneys strategic clinical network webinar final - 111214
Think kidneys   strategic clinical network webinar final - 111214Think kidneys   strategic clinical network webinar final - 111214
Think kidneys strategic clinical network webinar final - 111214
 
APA 2015_LM Brady involving cyp in research_03.15
APA 2015_LM Brady involving cyp in research_03.15APA 2015_LM Brady involving cyp in research_03.15
APA 2015_LM Brady involving cyp in research_03.15
 
Ageing and public health campaigns march 2013
Ageing and public health campaigns march 2013Ageing and public health campaigns march 2013
Ageing and public health campaigns march 2013
 
Introduction to dental Public health.ppt
Introduction to dental Public health.pptIntroduction to dental Public health.ppt
Introduction to dental Public health.ppt
 
John Gillies: Health and Social Care Integration in Scotland 2018
John Gillies: Health and Social Care Integration in Scotland 2018John Gillies: Health and Social Care Integration in Scotland 2018
John Gillies: Health and Social Care Integration in Scotland 2018
 
The challenge of diabetes: how do we respond?
The challenge of diabetes: how do we respond?The challenge of diabetes: how do we respond?
The challenge of diabetes: how do we respond?
 
Overview of tackling non-communicable diseases in England
Overview of tackling non-communicable diseases in EnglandOverview of tackling non-communicable diseases in England
Overview of tackling non-communicable diseases in England
 
4º Fórum da Saúde Suplementar - Lewis Sandy
4º Fórum da Saúde Suplementar - Lewis Sandy4º Fórum da Saúde Suplementar - Lewis Sandy
4º Fórum da Saúde Suplementar - Lewis Sandy
 
Health Impact Assessment of E-Medicine and Norway's Healthcare Policy Reform
Health Impact Assessment of E-Medicine and Norway's Healthcare Policy ReformHealth Impact Assessment of E-Medicine and Norway's Healthcare Policy Reform
Health Impact Assessment of E-Medicine and Norway's Healthcare Policy Reform
 
Lecture 1 Public health administration in the Pacific Islands.pptx
Lecture 1 Public health administration in the Pacific Islands.pptxLecture 1 Public health administration in the Pacific Islands.pptx
Lecture 1 Public health administration in the Pacific Islands.pptx
 
Jude Stansfield
Jude StansfieldJude Stansfield
Jude Stansfield
 
Presentation - Together advancing health and well-being for all at all ages
Presentation - Together advancing health and well-being for all at all agesPresentation - Together advancing health and well-being for all at all ages
Presentation - Together advancing health and well-being for all at all ages
 
Childhood Disability - Hans Forssberg
Childhood Disability - Hans ForssbergChildhood Disability - Hans Forssberg
Childhood Disability - Hans Forssberg
 
Global Health Exchange Fellowship Programme EVALUATION REPORT 2016
Global Health Exchange Fellowship Programme EVALUATION REPORT 2016Global Health Exchange Fellowship Programme EVALUATION REPORT 2016
Global Health Exchange Fellowship Programme EVALUATION REPORT 2016
 
Gill Rowlands Heath Literacy - Making it Everybody's Business
Gill Rowlands Heath Literacy - Making it Everybody's BusinessGill Rowlands Heath Literacy - Making it Everybody's Business
Gill Rowlands Heath Literacy - Making it Everybody's Business
 
What Is Public Health In Fulton County
What Is Public Health In Fulton CountyWhat Is Public Health In Fulton County
What Is Public Health In Fulton County
 
Running Head CHRONIC KIDNEY DISEASE RESOURCES 1CHRONIC KIDNE.docx
Running Head CHRONIC KIDNEY DISEASE RESOURCES 1CHRONIC KIDNE.docxRunning Head CHRONIC KIDNEY DISEASE RESOURCES 1CHRONIC KIDNE.docx
Running Head CHRONIC KIDNEY DISEASE RESOURCES 1CHRONIC KIDNE.docx
 
303 moving forward on mipaa s beales
303 moving forward on mipaa  s beales303 moving forward on mipaa  s beales
303 moving forward on mipaa s beales
 
Ifg htalk research-advocacy
Ifg htalk research-advocacyIfg htalk research-advocacy
Ifg htalk research-advocacy
 
Chronic Disease Prevention Policy development in Australia
Chronic Disease Prevention Policy development in AustraliaChronic Disease Prevention Policy development in Australia
Chronic Disease Prevention Policy development in Australia
 

More from Institute of Public Health in Ireland

Thomas T Prohaska
Thomas T ProhaskaThomas T Prohaska
Theo van Tilberg
Theo van TilbergTheo van Tilberg
Christina Victor
Christina VictorChristina Victor
James Lubben
James LubbenJames Lubben
Lessons from MESAS: Monitoring and Evaluating Scotland's Alcohol Strategy (ME...
Lessons from MESAS: Monitoring and Evaluating Scotland's Alcohol Strategy (ME...Lessons from MESAS: Monitoring and Evaluating Scotland's Alcohol Strategy (ME...
Lessons from MESAS: Monitoring and Evaluating Scotland's Alcohol Strategy (ME...
Institute of Public Health in Ireland
 
Prof. Shane O'Mara - Trinity College Dublin
Prof. Shane O'Mara - Trinity College DublinProf. Shane O'Mara - Trinity College Dublin
Prof. Shane O'Mara - Trinity College Dublin
Institute of Public Health in Ireland
 
Vanda Cummins, Health Service Executive
Vanda Cummins, Health Service ExecutiveVanda Cummins, Health Service Executive
Vanda Cummins, Health Service Executive
Institute of Public Health in Ireland
 
Maurice Dillon Health Service Executive & Julie Broderick, Trinity College Du...
Maurice Dillon Health Service Executive & Julie Broderick, Trinity College Du...Maurice Dillon Health Service Executive & Julie Broderick, Trinity College Du...
Maurice Dillon Health Service Executive & Julie Broderick, Trinity College Du...
Institute of Public Health in Ireland
 
Dr. Chris Leggett - Royal College of General Practitioners
Dr. Chris Leggett - Royal College of General PractitionersDr. Chris Leggett - Royal College of General Practitioners
Dr. Chris Leggett - Royal College of General Practitioners
Institute of Public Health in Ireland
 
Anne Gallagher - Cardiac Rehabilitation Team, Mater Misericordiae Hospital
Anne Gallagher -  Cardiac Rehabilitation Team, Mater Misericordiae HospitalAnne Gallagher -  Cardiac Rehabilitation Team, Mater Misericordiae Hospital
Anne Gallagher - Cardiac Rehabilitation Team, Mater Misericordiae Hospital
Institute of Public Health in Ireland
 
Dr Andrew O'Regan
Dr Andrew O'ReganDr Andrew O'Regan
Alan Donnelly
Alan DonnellyAlan Donnelly
Seamus Nugent
Seamus NugentSeamus Nugent
Michael Mc Corry
Michael Mc CorryMichael Mc Corry
Andrew Boyd
Andrew BoydAndrew Boyd
Prof. Kevin Balanda - Lifetime costs of childhood obesity in Northern Ireland
Prof. Kevin Balanda - Lifetime costs of childhood obesity in Northern IrelandProf. Kevin Balanda - Lifetime costs of childhood obesity in Northern Ireland
Prof. Kevin Balanda - Lifetime costs of childhood obesity in Northern Ireland
Institute of Public Health in Ireland
 
Dr. Mimi Tatlow-Golden - food marketing to children
Dr. Mimi Tatlow-Golden - food marketing to childrenDr. Mimi Tatlow-Golden - food marketing to children
Dr. Mimi Tatlow-Golden - food marketing to children
Institute of Public Health in Ireland
 
Dr. Liz Redmond & Mr. Gary Maxwell - Department of Health
Dr. Liz Redmond & Mr. Gary Maxwell - Department of HealthDr. Liz Redmond & Mr. Gary Maxwell - Department of Health
Dr. Liz Redmond & Mr. Gary Maxwell - Department of Health
Institute of Public Health in Ireland
 
Rita Sexton - Department of Education & Skills
Rita Sexton - Department of Education & SkillsRita Sexton - Department of Education & Skills
Rita Sexton - Department of Education & Skills
Institute of Public Health in Ireland
 
Paul Butler – Director, Mayo Education Centre
Paul Butler – Director, Mayo Education CentrePaul Butler – Director, Mayo Education Centre
Paul Butler – Director, Mayo Education Centre
Institute of Public Health in Ireland
 

More from Institute of Public Health in Ireland (20)

Thomas T Prohaska
Thomas T ProhaskaThomas T Prohaska
Thomas T Prohaska
 
Theo van Tilberg
Theo van TilbergTheo van Tilberg
Theo van Tilberg
 
Christina Victor
Christina VictorChristina Victor
Christina Victor
 
James Lubben
James LubbenJames Lubben
James Lubben
 
Lessons from MESAS: Monitoring and Evaluating Scotland's Alcohol Strategy (ME...
Lessons from MESAS: Monitoring and Evaluating Scotland's Alcohol Strategy (ME...Lessons from MESAS: Monitoring and Evaluating Scotland's Alcohol Strategy (ME...
Lessons from MESAS: Monitoring and Evaluating Scotland's Alcohol Strategy (ME...
 
Prof. Shane O'Mara - Trinity College Dublin
Prof. Shane O'Mara - Trinity College DublinProf. Shane O'Mara - Trinity College Dublin
Prof. Shane O'Mara - Trinity College Dublin
 
Vanda Cummins, Health Service Executive
Vanda Cummins, Health Service ExecutiveVanda Cummins, Health Service Executive
Vanda Cummins, Health Service Executive
 
Maurice Dillon Health Service Executive & Julie Broderick, Trinity College Du...
Maurice Dillon Health Service Executive & Julie Broderick, Trinity College Du...Maurice Dillon Health Service Executive & Julie Broderick, Trinity College Du...
Maurice Dillon Health Service Executive & Julie Broderick, Trinity College Du...
 
Dr. Chris Leggett - Royal College of General Practitioners
Dr. Chris Leggett - Royal College of General PractitionersDr. Chris Leggett - Royal College of General Practitioners
Dr. Chris Leggett - Royal College of General Practitioners
 
Anne Gallagher - Cardiac Rehabilitation Team, Mater Misericordiae Hospital
Anne Gallagher -  Cardiac Rehabilitation Team, Mater Misericordiae HospitalAnne Gallagher -  Cardiac Rehabilitation Team, Mater Misericordiae Hospital
Anne Gallagher - Cardiac Rehabilitation Team, Mater Misericordiae Hospital
 
Dr Andrew O'Regan
Dr Andrew O'ReganDr Andrew O'Regan
Dr Andrew O'Regan
 
Alan Donnelly
Alan DonnellyAlan Donnelly
Alan Donnelly
 
Seamus Nugent
Seamus NugentSeamus Nugent
Seamus Nugent
 
Michael Mc Corry
Michael Mc CorryMichael Mc Corry
Michael Mc Corry
 
Andrew Boyd
Andrew BoydAndrew Boyd
Andrew Boyd
 
Prof. Kevin Balanda - Lifetime costs of childhood obesity in Northern Ireland
Prof. Kevin Balanda - Lifetime costs of childhood obesity in Northern IrelandProf. Kevin Balanda - Lifetime costs of childhood obesity in Northern Ireland
Prof. Kevin Balanda - Lifetime costs of childhood obesity in Northern Ireland
 
Dr. Mimi Tatlow-Golden - food marketing to children
Dr. Mimi Tatlow-Golden - food marketing to childrenDr. Mimi Tatlow-Golden - food marketing to children
Dr. Mimi Tatlow-Golden - food marketing to children
 
Dr. Liz Redmond & Mr. Gary Maxwell - Department of Health
Dr. Liz Redmond & Mr. Gary Maxwell - Department of HealthDr. Liz Redmond & Mr. Gary Maxwell - Department of Health
Dr. Liz Redmond & Mr. Gary Maxwell - Department of Health
 
Rita Sexton - Department of Education & Skills
Rita Sexton - Department of Education & SkillsRita Sexton - Department of Education & Skills
Rita Sexton - Department of Education & Skills
 
Paul Butler – Director, Mayo Education Centre
Paul Butler – Director, Mayo Education CentrePaul Butler – Director, Mayo Education Centre
Paul Butler – Director, Mayo Education Centre
 

Recently uploaded

2024 HIPAA Compliance Training Guide to the Compliance Officers
2024 HIPAA Compliance Training Guide to the Compliance Officers2024 HIPAA Compliance Training Guide to the Compliance Officers
2024 HIPAA Compliance Training Guide to the Compliance Officers
Conference Panel
 
NEEDLE STICK INJURY - JOURNAL CLUB PRESENTATION - DR SHAMIN EABENSON
NEEDLE STICK INJURY - JOURNAL CLUB PRESENTATION - DR SHAMIN EABENSONNEEDLE STICK INJURY - JOURNAL CLUB PRESENTATION - DR SHAMIN EABENSON
NEEDLE STICK INJURY - JOURNAL CLUB PRESENTATION - DR SHAMIN EABENSON
SHAMIN EABENSON
 
Bringing AI into a Mid-Sized Company: A structured Approach
Bringing AI into a Mid-Sized Company: A structured ApproachBringing AI into a Mid-Sized Company: A structured Approach
Bringing AI into a Mid-Sized Company: A structured Approach
Brian Frerichs
 
Unlocking the Secrets to Safe Patient Handling.pdf
Unlocking the Secrets to Safe Patient Handling.pdfUnlocking the Secrets to Safe Patient Handling.pdf
Unlocking the Secrets to Safe Patient Handling.pdf
Lift Ability
 
Pediatric Emergency Care for Children | Apollo Hospital
Pediatric Emergency Care for Children | Apollo HospitalPediatric Emergency Care for Children | Apollo Hospital
Pediatric Emergency Care for Children | Apollo Hospital
Apollo 24/7 Adult & Paediatric Emergency Services
 
Innovative Minds France's Most Impactful Healthcare Leaders.pdf
Innovative Minds France's Most Impactful Healthcare Leaders.pdfInnovative Minds France's Most Impactful Healthcare Leaders.pdf
Innovative Minds France's Most Impactful Healthcare Leaders.pdf
eurohealthleaders
 
Know Latest Hiranandani Hospital Powai News.pdf
Know Latest Hiranandani Hospital Powai News.pdfKnow Latest Hiranandani Hospital Powai News.pdf
Know Latest Hiranandani Hospital Powai News.pdf
Dr. Sujit Chatterjee CEO Hiranandani Hospital
 
Hypertension and it's role of physiotherapy in it.
Hypertension and it's role of physiotherapy in it.Hypertension and it's role of physiotherapy in it.
Hypertension and it's role of physiotherapy in it.
Vishal kr Thakur
 
Top Rated Massage Center In Ajman Chandrima Spa
Top Rated Massage Center In Ajman Chandrima SpaTop Rated Massage Center In Ajman Chandrima Spa
Top Rated Massage Center In Ajman Chandrima Spa
Chandrima Spa Ajman
 
Bath patient Fundamental of Nursing.pptx
Bath patient Fundamental of Nursing.pptxBath patient Fundamental of Nursing.pptx
Bath patient Fundamental of Nursing.pptx
MianProductions
 
MBC Support Group for Black Women – Insights in Genetic Testing.pdf
MBC Support Group for Black Women – Insights in Genetic Testing.pdfMBC Support Group for Black Women – Insights in Genetic Testing.pdf
MBC Support Group for Black Women – Insights in Genetic Testing.pdf
bkling
 
MYASTHENIA GRAVIS POWER POINT PRESENTATION
MYASTHENIA GRAVIS POWER POINT PRESENTATIONMYASTHENIA GRAVIS POWER POINT PRESENTATION
MYASTHENIA GRAVIS POWER POINT PRESENTATION
blessyjannu21
 
CANSA support - Caring for Cancer Patients' Caregivers
CANSA support - Caring for Cancer Patients' CaregiversCANSA support - Caring for Cancer Patients' Caregivers
CANSA support - Caring for Cancer Patients' Caregivers
CANSA The Cancer Association of South Africa
 
DECODING THE RISKS - ALCOHOL, TOBACCO & DRUGS.pdf
DECODING THE RISKS - ALCOHOL, TOBACCO & DRUGS.pdfDECODING THE RISKS - ALCOHOL, TOBACCO & DRUGS.pdf
DECODING THE RISKS - ALCOHOL, TOBACCO & DRUGS.pdf
Dr Rachana Gujar
 
R3 Stem Cell Therapy: A New Hope for Women with Ovarian Failure
R3 Stem Cell Therapy: A New Hope for Women with Ovarian FailureR3 Stem Cell Therapy: A New Hope for Women with Ovarian Failure
R3 Stem Cell Therapy: A New Hope for Women with Ovarian Failure
R3 Stem Cell
 
NKTI Annual Report - Annual Report FY 2022
NKTI Annual Report - Annual Report FY 2022NKTI Annual Report - Annual Report FY 2022
NKTI Annual Report - Annual Report FY 2022
nktiacc3
 
U Part Wigs_ A Natural Look with Minimal Effort Jokerwigs.in.pdf
U Part Wigs_ A Natural Look with Minimal Effort Jokerwigs.in.pdfU Part Wigs_ A Natural Look with Minimal Effort Jokerwigs.in.pdf
U Part Wigs_ A Natural Look with Minimal Effort Jokerwigs.in.pdf
Jokerwigs arts and craft
 
National Rural Health Mission(NRHM).pptx
National Rural Health Mission(NRHM).pptxNational Rural Health Mission(NRHM).pptx
National Rural Health Mission(NRHM).pptx
Jyoti Chand
 
PrudentRx: A Resource for Patient Education and Engagement
PrudentRx: A Resource for Patient Education and EngagementPrudentRx: A Resource for Patient Education and Engagement
PrudentRx: A Resource for Patient Education and Engagement
PrudentRx Program
 
Friendly Massage in Ajman - Malayali Kerala Spa Ajman
Friendly Massage in Ajman - Malayali Kerala Spa AjmanFriendly Massage in Ajman - Malayali Kerala Spa Ajman
Friendly Massage in Ajman - Malayali Kerala Spa Ajman
Malayali Kerala Spa Ajman
 

Recently uploaded (20)

2024 HIPAA Compliance Training Guide to the Compliance Officers
2024 HIPAA Compliance Training Guide to the Compliance Officers2024 HIPAA Compliance Training Guide to the Compliance Officers
2024 HIPAA Compliance Training Guide to the Compliance Officers
 
NEEDLE STICK INJURY - JOURNAL CLUB PRESENTATION - DR SHAMIN EABENSON
NEEDLE STICK INJURY - JOURNAL CLUB PRESENTATION - DR SHAMIN EABENSONNEEDLE STICK INJURY - JOURNAL CLUB PRESENTATION - DR SHAMIN EABENSON
NEEDLE STICK INJURY - JOURNAL CLUB PRESENTATION - DR SHAMIN EABENSON
 
Bringing AI into a Mid-Sized Company: A structured Approach
Bringing AI into a Mid-Sized Company: A structured ApproachBringing AI into a Mid-Sized Company: A structured Approach
Bringing AI into a Mid-Sized Company: A structured Approach
 
Unlocking the Secrets to Safe Patient Handling.pdf
Unlocking the Secrets to Safe Patient Handling.pdfUnlocking the Secrets to Safe Patient Handling.pdf
Unlocking the Secrets to Safe Patient Handling.pdf
 
Pediatric Emergency Care for Children | Apollo Hospital
Pediatric Emergency Care for Children | Apollo HospitalPediatric Emergency Care for Children | Apollo Hospital
Pediatric Emergency Care for Children | Apollo Hospital
 
Innovative Minds France's Most Impactful Healthcare Leaders.pdf
Innovative Minds France's Most Impactful Healthcare Leaders.pdfInnovative Minds France's Most Impactful Healthcare Leaders.pdf
Innovative Minds France's Most Impactful Healthcare Leaders.pdf
 
Know Latest Hiranandani Hospital Powai News.pdf
Know Latest Hiranandani Hospital Powai News.pdfKnow Latest Hiranandani Hospital Powai News.pdf
Know Latest Hiranandani Hospital Powai News.pdf
 
Hypertension and it's role of physiotherapy in it.
Hypertension and it's role of physiotherapy in it.Hypertension and it's role of physiotherapy in it.
Hypertension and it's role of physiotherapy in it.
 
Top Rated Massage Center In Ajman Chandrima Spa
Top Rated Massage Center In Ajman Chandrima SpaTop Rated Massage Center In Ajman Chandrima Spa
Top Rated Massage Center In Ajman Chandrima Spa
 
Bath patient Fundamental of Nursing.pptx
Bath patient Fundamental of Nursing.pptxBath patient Fundamental of Nursing.pptx
Bath patient Fundamental of Nursing.pptx
 
MBC Support Group for Black Women – Insights in Genetic Testing.pdf
MBC Support Group for Black Women – Insights in Genetic Testing.pdfMBC Support Group for Black Women – Insights in Genetic Testing.pdf
MBC Support Group for Black Women – Insights in Genetic Testing.pdf
 
MYASTHENIA GRAVIS POWER POINT PRESENTATION
MYASTHENIA GRAVIS POWER POINT PRESENTATIONMYASTHENIA GRAVIS POWER POINT PRESENTATION
MYASTHENIA GRAVIS POWER POINT PRESENTATION
 
CANSA support - Caring for Cancer Patients' Caregivers
CANSA support - Caring for Cancer Patients' CaregiversCANSA support - Caring for Cancer Patients' Caregivers
CANSA support - Caring for Cancer Patients' Caregivers
 
DECODING THE RISKS - ALCOHOL, TOBACCO & DRUGS.pdf
DECODING THE RISKS - ALCOHOL, TOBACCO & DRUGS.pdfDECODING THE RISKS - ALCOHOL, TOBACCO & DRUGS.pdf
DECODING THE RISKS - ALCOHOL, TOBACCO & DRUGS.pdf
 
R3 Stem Cell Therapy: A New Hope for Women with Ovarian Failure
R3 Stem Cell Therapy: A New Hope for Women with Ovarian FailureR3 Stem Cell Therapy: A New Hope for Women with Ovarian Failure
R3 Stem Cell Therapy: A New Hope for Women with Ovarian Failure
 
NKTI Annual Report - Annual Report FY 2022
NKTI Annual Report - Annual Report FY 2022NKTI Annual Report - Annual Report FY 2022
NKTI Annual Report - Annual Report FY 2022
 
U Part Wigs_ A Natural Look with Minimal Effort Jokerwigs.in.pdf
U Part Wigs_ A Natural Look with Minimal Effort Jokerwigs.in.pdfU Part Wigs_ A Natural Look with Minimal Effort Jokerwigs.in.pdf
U Part Wigs_ A Natural Look with Minimal Effort Jokerwigs.in.pdf
 
National Rural Health Mission(NRHM).pptx
National Rural Health Mission(NRHM).pptxNational Rural Health Mission(NRHM).pptx
National Rural Health Mission(NRHM).pptx
 
PrudentRx: A Resource for Patient Education and Engagement
PrudentRx: A Resource for Patient Education and EngagementPrudentRx: A Resource for Patient Education and Engagement
PrudentRx: A Resource for Patient Education and Engagement
 
Friendly Massage in Ajman - Malayali Kerala Spa Ajman
Friendly Massage in Ajman - Malayali Kerala Spa AjmanFriendly Massage in Ajman - Malayali Kerala Spa Ajman
Friendly Massage in Ajman - Malayali Kerala Spa Ajman
 

Philip Watt, Cystic Fibrosis Ireland and Christine Collins NI Rare Diseases Partnership

  • 1. Patient and Public Involvement in Shaping Health Policy and Services in Ireland North and South A FOCUS ON RARE DISEASES Philip Watt: Rare Disease Task Force (Republic of Ireland) Fiona McLaughlin: Northern Ireland Rare Disease Partnership
  • 2. What is PPI? World Health Organisation (1978) ‘People have the right of duty to participate individually an collectively in the planning and implementation of their healthcare’ Irish Health Research Forum (2015) ‘By involvement we mean a process by which people are enabled to become actively and genuinely involved in defining the issues of concern to them, in making decisions about factors that affect their lives and implementing policies , in planning, developing and delivering services and taking action to achieve change’ John Saddler, NHS Confederation (2015) ‘Sharing decision-making with patients and the wider community can improve care, help internal NHS collaboration and engage vulnerable people’ Terry McGeeney MD (2012) ‘The lack of patient engagement is the Achilles' Heel of health care delivery in the US’
  • 3.
  • 4. Patient and Public Involvement (PPI)
  • 5. The Journey of Patient Groups 1. Development of Effective networks  Northern Ireland Rare Disease Partnership  Rare Disease Task Force 2. The National Rare Disease Plans in the UK (2013) and NI Implementation Plan (2015) 3. The National Rare Disease Plan in Ireland (2014) 4. Joint commitments in both plans to N/S cooperation 5. Increased cooperation of civil servants on a North/South basis
  • 6.
  • 7. Launch of NI Rare Disease Implementation Plan, 2015
  • 8.
  • 9. Rare Disease Day, 29 February
  • 11. The Impact of Cross Border PPI on Rare Diseases Exchange of information and good practice (for example North-South conferences on rare diseases alternately held in Belfast and Dublin) Awareness raising - Rare diseases now ‘on the agenda’. Identification of best potential for increased co-operation, for example: - Health Research (very advanced in some areas) - Transplant services (lung and Kidney programmes) - Clinical genetic services (diagnosis and counselling) - Clinical trials for new and innovative therapies
  • 12. What now? Implementation plans Personal & public involvement Brexit? Funding