Conference Report Report of meeting V3

CONTENTS
Introduction
3
Contributions
4
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Building better partnerships
-
A new framework for public patient involvement in health research
-
The critical value of patient feedback
-
Where next? – patient involvement in health service development and delivery
Patient forum – Partnerships that work
7
Conference feedback
8
List of registered delegates
9
APPENDIX
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INTRODUCTION
On the 30th June 2015, the Irish
Pharmaceutical Healthcare Association
(IPHA), the representative body for the
international research-based pharmaceutical
industry in Ireland hosted a major patient
focused conference in the Royal College of
Physicians of Ireland. Supported by IPOSSI,
the conference was themed Innovation and
Partnership. The purpose of the event was to
explore the importance of relationships
between
patient
organisations,
the
pharmaceutical industry and health service
policy makers and providers. These
relationships play a fundamental role in
improving patient care and better healthcare
outcomes.
The audience at the RCPI
Chaired by RTE journalist and long-time
patient advocate, Tommie Gorman, a large
audience consisting of representatives from
over 50 separate patient organisations,
healthcare representative bodies, as well as
members of IPHA, heard an expert panel of
speakers give different perspectives on the
theme of partnership
As well as IPHA CEO Oliver O’Connor, the
panel of speakers included Dr Gabriel Eichler
a senior representative of US based
organisation PatientsLikeMe which gathers
real time patient data to develop new
treatments and therapies; Dr Graham Love,
CEO of the Health Research Board (HRB) and
Dr Philip Crowley, HSE National Director of
Quality Improvement. The conference gave a
platform to a number of patient organisations
who told their stories about partnerships with
the industry and how these could be improved
for the benefit their members. The audience,
many of whom were members of IPOSSI, also
played an active part in the proceedings.
L to R: Brian Longstreet, MSD; Tommie Gorman; Avril
Daly,
Fighting
Blindness;
Gabriel
Eichler,
PatientsLikeMe; Oliver O’ Connor, IPHA
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BUILDING BETTER
PARTNERSHIPS – Oliver
O’Connor, IPHA CEO
There was also great potential for far more
collaboration in the whole area of real world
evaluation of clinical data.
Oliver O’Connor, IPHA CEO outlined how the
research-based pharmaceutical industry is
committed to building on and enhancing
relationships with patient organisations. This
was particularly important in the development
of new medicines.
A NEW FRAMEWORK FOR
PUBLIC PATIENT
INVOLVEMENT IN HEALTH
RESEARCH – Dr Graham
Love, HRB, CEO
Dr Graham Love, Health Research Board
(HRB) CEO gave a comprehensive
presentation to the meeting on his
organisations plans to accelerate public
patient involvement in the research projects it
supports.
Oliver O’Connor
IPHA represented 47 research based
pharmaceutical companies which were
focused on bringing cutting edge medicines
to thousands of people in Ireland. Last year
alone, IPHA companies introduced 29 new
medicines which will benefit up to 700,000
people.
Although his organisation had a budget of
€43 million for its projects and programmes, a
relatively small amount of this was currently
being spent on public patient projects. He
was determined to enhance the involvement
of patients as was now being reflected
through the Boards most high profile and
well-funded initiatives, the Health Research
Awards (HRA).
He outlined how partnership and close
relationships with stakeholders was essential
to the work of IPHA. The Association invested
a lot of time in dialogue with bodies such as
the Department of Health and the HSE,
HPRA, medical representative groups and
members of the Oireachtas.
There was he argued greater scope for the
industry to work more collaboratively and in
greater partnership with patients’
organisations. Building better partnerships
between the industry and patients was a
priority for IPHA.
He identified the issue of adherence to
medication as an ideal example of how the
industry and patient organisations can work
more closely together.
Dr Graham Love
4
Innovation and Partnership
Applicants for the HRA in 2015 had been
informed that they must demonstrate a strong
public patient element to their research
projects. The research community was left in
no doubt that the HRB was committed to the
active involvement of the public in the
research that it funds where the term ‘public’
includes patients, potential patients, carers
and people who use health and social care
services as well as people from organisations
that represent people who use services.
groups and directorates. These changes were
a great opportunity to try to do things
differently and to change perceptions of the
health service.
Compared to the UK, Ireland had a lot of
catching up to do in this regard. Public patient
experiences were now an integral part of many
health research projects in the UK for at least
a decade. The HRB would be looking to see
what learnings could be got from the British
experience.
As Director of Quality Improvement for the
HSE he was rolling out a challenging and
ambitious programme of reform. This was
centred on supporting person centred care;
supporting staff in improving quality; learning
and measuring for improvement and
governance for quality and safety.
Dr Love outlined that the HRB’s forthcoming
five year plan would prioritise an active
partnership between members of the public
and researchers in the research process.
Fundamental to the success of this reform
would be the role of patients. Although their
input into the development of appropriate and
essential healthcare services was crucial, this
would only be effective if it was valued and
they felt really listened to. He conceded that
this had not always been the case
WHERE NEXT? – PATIENT
INVOLVEMENT IN HEALTH
SERVICE DEVELOPMENT
AND DELIVERY – Dr Philip
Crowley, HSE National
Director of Quality
Improvement
Dr Philip Crowley, HSE National Director of
Quality Improvement emphasised strongly
that the voice of patients must be heard by
healthcare professionals and healthcare
organisations. Everyone should expect to
participate in their care and the patient voice
was crucial in developing appropriate and
effective services.
Dr Crowley highlighted in particular the
importance of making health service workers
at all levels feel more valued. Steps were
being taken to address this as happier more
valued staff would impact positively on better
patient care.
The HSE was now actively engaged in
ensuring that the voice of patients was being
heard. This was an evolving process and a
number of initiatives were underway, including
a national patient forum.
Although like all reform, it would take time to
implement change. In assessing the
experience of patients in their engagement
with the health services, an important factor
would be if they felt their views had been taken
into account.
Putting this into practice was though often very
challenging due to pressures in the overall
health environment.
Low morale, a constant stream of negative
and often unfair media coverage, resource
issues, waiting lists, recruitment and retention
problems meant that the HSE in particular was
often preoccupied with firefighting and on the
back foot.
Dr Philip Crowley
The HSE was itself undergoing fundamental
structural change through the new hospital
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THE CRITICAL VALUE OF
PATIENT FEEDBACK –
Dr Gabriel Eichler,
PatientsLikeMe. General
Manager, Client Services and
Strategic Initiatives
Delegates heard Dr Gabriel Eichler give a
very stimulating presentation on the work of
US based PatientsLikeMe which runs a
unique health data sharing platform designed
to help patients to manage their own
conditions, influence the way industry
conducts research and improve patient care.
Through its website www.patientslikeme.com,
the organisation has over 350,000 members
who report on their real-world experiences of
more than 2,500 conditions.
The website allows patients to connect with
those sharing the same conditions and learn
from each other’s experiences. This is turn
generates real world data on sickness and
disease which can be utilised by the research
community, including the pharmaceutical
industry to develop better therapies and care.
Dr Eichler outlined how patients are were seen
as partners, rather than subjects. The
generation and exchange of real world
information gave an invaluable insight into
patients’ lives and healthcare experiences
over time. This gave patients a degree of
ownership over the treatment of their
conditions. The critical importance of patient
feedback was at the core of making
PatientsLikeMe the growing success that it
was.
Dr Gabriel Eichler
Dr Eichler outlined how this growing success
was reflected in the recent announcement that
the US Food and Drug Administration (FDA)
was joining with the organisation to explore
how patient generated data could be utilised to
give better insights into medicine.
6
Innovation and Partnership
PATIENTS FORUM –
PARTNERSHIPS THAT
WORK
In keeping with the focus on the patient voice,
a number of patient organisations were given
a platform to share their experiences and
outline the importance of their views being
taken on board by the pharmaceutical industry
and health services generally.
Avril Daly outlined how Fighting Blindness
had evolved into global leaders in the search
for cures and treatments for genetically
inherited and age-related forms of blindness.
It had started from very humble origins but had
gradually evolved into an advocacy group
where the patient voice was paramount. She
highlighted the partnership element of much of
the groups work, including the production of a
Guide to Conditions of the Retina publication
which received significant support from
industry, a support which was highly valued.
Ava Battles of MS Ireland argued that in her
experience more work needed to be done by
healthcare providers in making patients feel
that their experiences were being taken on
board when new therapies and treatments
were being developed. She also highlighted
the vital role of industry which was supporting
their work, including a major study on the
societal costs of multiple sclerosis in Ireland
Avril Daly (Fighting Blindness)
pppp
Ciaran Davis of the Irish Society of Colitis and
Crohn’s Disease outlined the perspective of a
relatively small patient advocacy group.
Without collaboration and support from the
pharmaceutical industry they would struggle to
deliver support to their members and to
undertake advocacy programmes. He
highlighted the Beaumont Hospital Better
Health Better Living programme as an
excellent example of this.
Ava Battles (MS Ireland)
Ciaran Davis (Irish Society for Colitis and Crohn’s
Disease)
Avril Daly from Fighting Blindness, Ava
Battles from MS Ireland and Ciaran Davis
from the Irish Society for Colitis and
Crohn’s Disease each gave a short
presentation.
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CONFERENCE FEEDBACK
We asked a selection of those who had
attended the conference for their feedback
on the day and their views on the value of
partnership. Here is a summary of what
some of them said:
What are the next steps for partnerships
between the pharmaceutical industry and
patients?
Well it was a very interesting day. We had
people coming from different skill sets. You
had the industry represented, but a very
strong patient voice. The real question is
where do we go from here? There would
appear to be a synergy for greater
involvement. The real test will be in better
outcomes.
Tommie Gorman, Conference Moderator
Is the patient voice heard in healthcare policy
delivery?
The role of the patient voice is pivotal. It is
good that the conversation is beginning to turn
towards including the patient voice and it is
good if it turns towards a two way flow of
information.
Kevin Kelly, Asthma Society of Ireland
How important are partnerships to patient
organisations?
Partnerships are the way to go. We need to
work collaboratively. We need to ask how we
can have real and meaningful partnerships
when we have unequal players in the field.
There might be an organisation with limited or
no resources versus one with multimillion
euro resources. How can we reach out to
these less well-resourced organisations, who
may be in rural areas, are not on line and are
not media savvy? ….we need to sit down with
our partners to see how we can make these
voices heard.
Damien Peelo, COPD Support
How important is the patient voice in the work
of the Health Resrach Board in Ireland?
Delighted to hear that the HRB is so
supportive of public patient involvement.
Epilepsy Ireland has been involved in such
initiatives in the past, however we have
encountered a lot of roadblocks. It is good
that the HRB now appear to be putting a
particular importance on public patient
invovlement.
Mike Glynn, Epilepsy Ireland
How has pharmaceutical research changed
your life and can patients drive research?
I want to give full credit to the pharmaceutical
industry. Pharmaceuticals have offered me
20 years of care and given me my life back.
I’m delighted that there are now plans to
involve patients more in the whole research
process ….different specialists should make
more effort to inform patients of research and
involve them in clinical trials.”
Patricia Ryan, Vascular Awareness
Tommie Gorman and Oliver O’Connor
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Innovation and Partnership
LIST OF REGISTERED DELEGATES
REPRESENTATIVE
Carmel Donohue
John McCarthy
Paula Guerin
Ingrid McGowan
Todd Manning
Sarah O’Callaghan
Martin Coen
Patricia Kelly
Gerry Burke
Garvan Byrne
Hugh Hardiman
Tristan Cooper
Jedd Comiskey
Eilish Moran
Martine Douglas
Caroline Daly
Colin Edwards
Carl Gibney
Liam Cullen
Helen O’Dwyer
Sarah Gahan
Stephen Kennedy
Irish Cribbin
Michelle De Brun
Isabella Poma
Julie Wong
Miriam Adamson
David McCarthy
Tim Hines
Nicola Fulham
Clare Cushen
Ceara Belviso
Brian Longstreet
Michelle Rockingham
Louise Duggan
Alison Henderson
Ian Pepper
Lorcan Walsh
Niamh Murphy
Eva Lindgren
Gillian Molloy
Jennifer Day
Paul Reid
Dervila Keane
Karen O’Keeffe
Caoimhe Graham
Clare Blaney
Dermot Davis
ORGANISATION
AbbVie
AbbVie
AbbVie
AbbVie
AbbVie
AbbVie
Astellas
Astellas
AstraZeneca Pharmaceuticals (Ireland) Ltd
Amgen
Bayer Limited
Bayer Limited
Bayer Limited
Bayer Limited
Biogen Idec
Boehringer Ingelheim Ireland Ltd.
Boehringer Ingelheim Ireland Ltd.
Hume Brophy
GSK Ireland
GSK Ireland
GSK Ireland
GSK Ireland
Janssen
Janssen
LEO Pharma
LEO Pharma
LEO Pharma
Lundbeck
MSD
MSD
MSD
MSD
MSD
MSD
Novartis Ireland Ltd
Novartis Ireland Ltd
Novartis Ireland Ltd
Novartis Ireland Ltd
Novartis Ireland Ltd
Novartis Ireland Ltd
Novartis Ireland Ltd
Novo Nordisk
Pfizer Healthcare Ireland
Pfizer Healthcare Ireland
Pfizer Healthcare Ireland
Pfizer Healthcare Ireland
Roche Products (Ireland) Ltd
sanofi-aventis
Andrea Logue
Yvette Murphy Skov
John Kiernan
sanofi-aventis
sanofi-aventis
Quintiles
REPRESENTATIVE
Aoife Carey
Aoife O’Driscoll
Aoife Prendergast
Ava Battles
Avril Daly
Avril Kennan
Brendan Gaughan
Catherine Connor
Clair Kelly
Damien Peelo
David McMahon
Deirdre Hyland
Derek Mitchell
ORGANISATION
Irish Heart Foundation
National Adult Literacy Agency (NALA)
Irish Premature Babies.
MS Ireland
Fighting Blindness
Debra Ireland
Irish Heart Foundation
Alpha One Foundation (RCSI)
Muscular Dystrophy Ireland
COPD Support Ireland
Irish Skin Foundation
RCSI
EU Joint Programme - Neurodegenerative
Disease Research (JPND)
National Children’s Research Centre
ICORG
RCSI
TCD
National Infertility Support and Information
Group
Disability Federation of Ireland
Coeliac Society of Ireland
Arthritis Ireland
Marie Keating
Health Research Institute
European Headache Alliance
Medical Research Charities Group,
Molecular Medicines Ireland
Irish Heart Foundation
Aids West
Arthritis Ireland
Chronic Pain Ireland
Vasculitis Ireland Awareness
OACS Ireland
PKU Association of Ireland
Asthma Society
RCSI
Irish Lung Fibrosis Association
Marie Keating
Sickle Cell and Thslassaemia Ireland
Neurological Alliance of Ireland
Fighting Blindness
Medical Research Charities Group,
NET Patient Group
National Children’s Research Centre
Active Retirement Ireland
UCD
Medistori
Health Research Board
Dr Jacinta Kelly
Eibhlin Mulroe
Fiona Manning
Gaye Stephens
Gerardine Fitzpatrick
Graham Loftus
Gráinne Denning
Grainne O’Leary
Helen Forristal
Imelda Doolan
Jane Whelan
Jenny Watson
Jeremy Towns
Jessica Harrigan
Joe McDonagh
John Church
John Lindsay
Julie Power
Karen Keely
Karen Willetts
Kevin Kelly
Laura Fee
Liam Galvin
Liz Yeates
Lora Ruth Wogu
Mags Rogers
Maria Meehan
Marie Downes
Mark McDonnell
Mary Costello
Maureen Kavanagh
Nicola Mountford
Olive O’Connor
Oonagh Ward
Innovation and partnership
Orla Coffee
Patricia Ryan
Patrick Little
Rachel Lynch
Sharon Cosgrove
Sharon Morrow
Sharon Thompson
Siobhan Gaynor
So Ra Bae
Suzanne Dowd
Suzanne McCormack
Ursula Hakman
Wendy Costello
Marion Finch
Fionnuala Gibbons
Chronic Pain Ireland
Vascular Awareness
Migraine Association of Ireland
Fibro Ireland
Asthma Society
Laura Lynn Foundation
Steve Kennedy
Colm O'Loughlin
Lisa Mehigan
Ann Kelly
Mary Clarke Moloney
Dervilla O’Brien
Aislinn Enright
Marie Kehoe O’Sullivan
Dr Joan Gilvarry
Michael Hayes
Lorraine Nolan
Fionnuala Keane
Donna Tedstone
Anne Cody
Peter Hyde
Helen Flint
Martin Varley
Fergal Egan
Jack Daly
Justin Carty
Anne Marie Feeney
Pamela Logan
Roddy Feely
Dr. Gerry Cummins
Áine Murphy
Anthony Carroll
David Keyes
James Kelly
Carmel Connellan
Mr. Gerry O'Dwyer
Dr Jean Saunders
Chantelle Kiernan
David Brody
Garreth Molloy
John Armstrong
Mr Bill Maher
William Byrne
Dave Shanahan
ABPI
Dept of Health
Edelman
FIPRA
Health Research Institute
Healthbridge Technology
Healthbridge Technology
HIQA
HPRA
HPRA
HPRA
HRB
HRB
HRB
HRB
HSE
IHCA
IMS Health
IMS Health
IMSTA
IPA
IPU
Ire-US Council
ICGP
Molecular Medicine Ireland
MRII Council Member
PMI
Prospectus
Screenkeys
South / South West Hospital Group
University of Limerick
IDA
IDA
NPS Pharma International Ltd
Aviva
RCSI Hospitals Group
SwiftQueue
Adagiov
Genable
COPD Support Ireland
Debra Ireland
Irish Thoracic Society
Fibro Ireland
Irish Children Arthritis
Rare Diseases
Molecular Medicines Ireland
APPENDIX
To view the full conference programme visit www.ipha.ie/news/latest-news
To view the full set of presentations and video recording of the event visit www.ipha.ie/alist/ipha-events
To view media coverage of the event in the Medical Independent, the Irish Times and the Irish Pharmacist
visit:
http://www.medicalindependent.ie/68370/conference_hears_how_partnership_is_the_key_to_better_health_
outcomes_for_patients
http://www.irishtimes.com/life-and-style/health-family/patients-voices-amplify-the-heart-of-healthcare1.2307533
http://www.greencrosspublishing.ie/attachments/IRISH_PHARMACIST_AUG_15.pdf (p30)
The Irish Pharmaceutical Healthcare Association (IPHA) represents the international research based
pharmaceutical industry in Ireland. Our members include both manufacturers of prescription medicines and
non-prescription or consumer health care medicines. Today people in Ireland live longer, healthier and more
active lives, in part, due to medical progress and the use of new innovative medicines. Not only is the
pharmaceutical industry critical to the health of the nation, it plays a critical and substantial role in the Irish
economy.
Irish Pharmaceutical Healthcare
Association Ltd
1st Floor Wilton Park House
Wilton Place
Dublin 2
Ireland
Follow the IPHA on...
+353 1 661 0018
www.ipha.ie
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