The Power of Partnership - Patient Information Forum

Transcription

The Power of Partnership
Working in collaboration to deliver high-quality
healthcare information and support
Wednesday 25 May 2016
Royal College of Physicians, 11 St Andrew’s Place, London NW1 4LE
11th Annual Conference for People Involved in
Healthcare Information and Support
Attendee Handbook
Twitter: @PiFonline
Lead Sponsor
#pifconf2016
WELCOME…
Thank you for joining us today at our Annual Conference for People
Working in Healthcare Information and Support, held by the Patient
Information Forum.
We are delighted to share with you PIF’s new 5-year strategy which will focus on the following key
themes:
QUALITY
We raise standards and highlight
good practice in the production
and provision of healthcare
information and support
INTEGRATION
EXPERTISE
We champion and enhance the
expertise of people working
in the field of healthcare
IMPACT
We campaign for high-quality
healthcare information and
support to be an integral part
of the patient journey
We promote the need to
evaluate the impact of
high-quality healthcare
We look forward to working with you over the coming year to further these aims. You can start
exploring how we are approaching expertise by visiting the PIF stand and talking to our partners,
Education for Health, about our new, free, e-learning unit on ‘Creating and Presenting a Business
Case for Information’.
The PIF Board and Operations Team below hope to meet you throughout today’s event. You can
find us at the PIF stand in the Exhibition Hall during the refreshment breaks and over lunch.
There will be plenty of time to network, both formally and informally, and please do join us at the end
of the conference for a drink and more networking opportunities.
We hope you enjoy the conference, and that you find some fresh contacts, learn something new and
begin to develop partnerships to improve patient-centred care in the future.
THANKS
A huge thank you to everyone who has attended and
contributed to the PIF conference 2016!
The PIF Team
Sue Farrington Chair
Mark Duman Non-Executive
Director
Wayne Middleton Non-Executive
Director
Julie Yaxley Non-Executive
Director
Nicole Naylor Joint Head of
Operations
Claire Murray Joint Head of
Operations
Twitter: @PiFonline
Conference hashtag: #pifconf2016
WHAT TO DO FIRST
Ok, so you have walked through the doors – what should you do next?
Go to the PIF registration desk (turn right as you enter the Royal College building), sign in and
collect your badge and delegate handbook.
The Case Study Sessions you have chosen to attend will be marked on your name badge.
At the back of your badge you will find some personalised business cards for you to use
throughout the day, but please feel free to use your own too!
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Visit the cloakroom on the Lower Ground Floor where you can leave your coat and other
belongings in the supervised cloakroom.
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Sign in to the free Wi-Fi (see page 25 for instructions)
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Follow the conference on Twitter via @PiFonline #pifconf2016
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Now it is time for refreshments! Take the stairs or lift to the Osler and Long Rooms on the
Second Floor.
While drinking, think about your questions for the Keynote Conversation panelists on the topics
below (See page 6-8 for a full list of panelists and their organisations)
• The benefits and challenges of partnership working in healthcare information and support
• A joined up vision for partnership working
You can submit your questions for the Keynote Conversations via the following:
Reply slip: attached to your delegate handbook, and post it at the PIF Stand
Tweet: @PiFonline - #pifconf2016 via Twitter.com
In person: from the audience
Visit each exhibition stand and complete the
quiz on p19-20 Hand your quiz sheet in to
the PIF stand at the end of the conference to
be entered into a prize draw.
Start completing your online evaluation
form (https://www.surveymonkey.co.uk/r/
pifconf2016-delegates) as the conference
progresses. We genuinely change
what we do based on the feedback we
receive from you.
Begin networking and creating
partnerships for the future!
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Twitter: @PiFonline
BUILDING PLAN
Second Floor
Dorchester Library Gallery
Gallery
Osler Gallery
Wilian Room
Heberden Room
Osler Room Gallery
Wellcome Library
Second Floor Gallery
Atrium
Fellows’ Room
Heberden Room
Wilian Room
Dorchester Library Gallery
First Floor
Dorchester Library
Gallery
Long Room
Osler Room
Osler Room
Long Room
Atrium
First Floor Gallery
Dorchester Library
Ground Floor
Council Chamber
Censors’ Room
Park Room
Linacre Room
Sloane Room
Entrance & Reception
The Marble
Wolfson Theatre
Sloane Room
Linacre Room
Council Chamber
College Offices
The Marble
Park Room
Censors’ Room
Entrance and Reception
Wolfson Theatre
Lower Ground Floor
Amenities
Lower Hall
Platt Room
Seligman Theatre
Silver Room
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Seligman Theatre
Amenities
Amenities
Cloakroom
Cloakroom
Lap-top ComPoint
Wi-Fi
Accessible Entrance
Showers
Toilets including accessible facilities
Fellows’ Buttery
Silver Room
Lower Hall
Platt Room
Garden Entrance
Thomas Cotton Room
Twitter: @PiFonline
AGENDA
09:15-09:45 Registration, coffee and exhibition
Our lively exhibition area is a great chance to learn about new technologies and innovations.
Visit each exhibition stand and complete the quiz on p19-20. Hand your quiz sheet into the
PIF stand at the end of the conference to be entered into a prize draw.
09:45-10:00 Welcome and update
Osler Room /
Long Room
Wolfson
Theatre
Sue Farrington – Chair, Patient Information Forum
10:00-10:30 Presentation: A patient’s vision of a partnership approach to
Wolfson
Theatre
Kate Betteridge - Long-Term Rheumatoid Arthritis Patient
Elisabeth Davies - Chair, Patient and Carer Network - Royal College of
Physicians; Deputy Chief Executive - Arthritis Care
Q&A
10:30-11:00 Presentation: An update on The Information Standard and the
Accessible Information Standard
Wolfson
Theatre
Jane Fox - Programme Manager, The Information Standard and the Accessible Information
Standard - Delivery Team, NHS England
11:00-11:30 Marketplace
• Best Poster Competition
This dedicated session will allow entrants in the Best Poster Competition to discuss and
share their work or project with delegates. Each poster will showcase partnership working in healthcare information and support. See pages 12-15 for more details.
Dorchester
Library
• Trial the new PIF e-learning unit
We are excited to announce that, in partnership
with Education for Health, the Patient
Information Forum will be showcasing our trial,
online training unit on Creating and Presenting a
Business Case for Information. Come and talk
to Education for Health about how you can take
part.
11:30-12.00 Speed networking (including refreshment break)
At the heart of partnership working is identifying shared priorities and areas of interest.
Osler Room /
Long Room
This is your opportunity to engage with other event attendees, discuss your work, and make
some useful connections that will help drive your activities and projects forwards.
12:00-12:45 Keynote Conversation: The benefits and challenges of partnership
working in healthcare information and support
Wolfson
Theatre
This Question Time-style session will invite the panel below to share their experiences and
views, and discuss with the audience, the benefits of partnership working, the key barriers
to increasing a partnership approach, and how these can be overcome within, and between,
the sectors.
Patient perspective:
Tess Harris - CEO, Polycystic Kidney Disease Charity; President, PKD International; General
Secretary, Ciliopathy Alliance
NHS perspective:
Professor Jane Dacre - President, Royal College of Physicians London
Voluntary sector perspective:
Caspar Thomson - Executive Director, NAM
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AGENDA - continued
12:00-12:45 Pharmaceutical perspective:
Anita Ralli - Public Affairs Manager, LEO Pharma
(cont’d)
Wolfson
Theatre
Care Quality Commission perspective:
Chris Day – Director of Engagement, Care Quality Commission
Chaired by:
You can contribute to the conversation in the following ways:
In person: Share your questions or experience during the conversation from the audience
12:45-13:45 Lunch, networking, exhibition and best poster competition vote
See pages 19-20 to take part in the Exhibitor Quiz and to be entered into our prize draw
Osler Room /
Long Room
13:45-14:55 Case Studies Group Session
This interactive session will showcase examples of partnerships that have involved people
from a variety of sectors, and led to improved health information and patient experience in
the following areas:
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Creating a co-produced web-based hub of tools and information to commission
epilepsy services - a voluntary sector and Clinical Commissioning Group
partnership
Juliet Ashton - Epilepsy Nurse Specialist, Norfolk Community Health and Care Trust;
Peri O'Connor - Healthcare Projects Coordinator, Epilepsy Action
Dorchester
Library
(left side)
Producing targeted information for hard to reach groups (case studies involving
collaboration and user involvement) - a voluntary sector approach
Claire Cohen - Information and Education Manager, Jo’s Cervical Cancer Trust
Sloane
Room
3
Developing digital approaches to enable lifestyle choices, deliver improved
outcomes and efficiency in self-management - an NHS approach
Catherine McShane – Clinical Project Manager, County Durham and Darlington NHS
Foundation Trust
Linacre
Room
4
Prescribing film-based information to change patient behaviours:
a public private partnership in Wales
Melanie J Thomas - National Clinical Lead for Lymphoedema in Wales, Cimla Health
and Social Care Centre;
Kimberley Littlemore - Creative Director, eHealth Digital Media and Littlefox
Communications, Fellow of the College of Medicine, Swansea University
Wolfson
Theatre
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Transforming Care After Treatment (TCAT) – New approaches to partnership
working for those affected by cancer- A case study from Scotland
Gordon McLean - National Programme Manager for the Transforming Care After
Treatment (TCAT) project, Macmillan Cancer Support
Simon Malzer - Service User Involvement Manager, Macmillan Transforming Care After
Treatment Programme, Health and Social Care Alliance Scotland (the ALLIANCE)
Dorchester
Library
(right side)
Partnership working with the pharmaceutical industry
James Fitzpatrick - Government Affairs & Patient Advocacy Lead, Janssen UK & Ireland
Barbara Donalson - Patienty Advocacy and Engagement Manager - Janssen UK &
Ireland
Censor's
Room
Following a short presentation presenters and delegates will discuss the challenges, benefits
and successes of the case study. Case Study Sessions will last for 30 minutes, and will each
run twice, so delegates will have the opportunity to be part of two case study presentations.
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14:55-15:20 Refreshment break
Osler Room /
Long Room
15:20-16:05 Keynote Conversation: A joined up vision for
partnership working
Wolfson
Theatre
Representatives from decision and policy-making bodies from England,
Northern Ireland, Scotland and Wales will provide their vision of partnership working in
healthcare information and support.
Discussion with the audience will explore what mechanisms and levers these organisations
have, or are developing, to improve partnership working and the provision of high quality,
accessible health information and support.
England
Jonathan Berry - Personalisation & Control Specialist, NHS England
Northern Ireland
Maeve Hully - Chief Executive, Patient and Client Council
Scotland
Arlene Campbell - National Partnership & Consumer Engagement Manager, Health Information Services, NHS 24
Wales
Mike Ogonovsky - Head of Health and Social Care Informatics, NHS Wales
Coalition of Collaborative Care
Fiona Carey - Co-Chair, Coalition of Collaborative Care
Chaired by:
Elisabeth Davies – Chair, Patient and Carer Network, Royal College of Physicians; Deputy
Chief Executive, Arthritis Care
You can contribute to the conversation in the following ways:
16:05-16:15 Best Poster Award announced
Wolfson
Theatre
16:15-16:25 Summing up, close and thanks
Wolfson
Theatre
16:25-17:00 Drinks reception
Please join us for an informal drink and more networking opportunities.
Twitter: @PiFonline
Osler Room /
Long Room
#pifconf2016
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BIOGRAPHIES
PRESENTERS:
A patient’s vision of a partnership approach to healthcare information and support
Kate Betteridge - Long-Term Rheumatoid Arthritis Patient
Kate Betteridge has over 20 years’ experience of working with people with long-term conditions to empower them to
make informed choices about their health and lifestyle.
She has extensive experience of involving service users in the development of information and other resources
designed to promote and support self-management. She works on an independent basis to improve outcomes for
people living with long-term conditions by providing insight and advice on the patient perspective across the public,
private and voluntary sectors. Previously, Kate spent many years working as Head of Information at Arthritis Care, the
UK’s largest charity representing people with any form of musculoskeletal condition.
Kate acts as a patient and carer representative with NHS Improving Quality’s 7 Day Services team, recently accompanying them on
Early Adopter site visits. She was a member of the Enhanced Recovery Patient Experience Working Group, whose work includes the
development of a leaflet to help patients prepare for surgery.
She is significantly affected by rheumatoid arthritis, which she has lived with since a teenager.
Elizabeth Davies – Chair, Patient and Carer Network - Royal College of Physicians; Deputy Chief Executive Arthritis Care
Elisabeth became the Chair of the Patient and Carer Network at the Royal College of Physicians in May 2015. Her
career, combining professional and voluntary commitments, has centred on consumer engagement and a deepseated belief in developing services that are truly consumer-focused. She has worked across the charitable and public
sectors with a particular focus on the needs of health and social care users. She is currently Deputy Chief Executive at
Arthritis Care. Former roles include at Carers UK, Age UK, the World Cancer Research Fund and as the founding Chief
Executive of the UK Breast Cancer Coalition.
Within the NHS, Elisabeth has combined executive and non-executive roles. She was Head of Policy, Planning and Partnerships at the NHS
National Patient Safety Agency, leading on patient and public reporting. Non-Executive roles include former Deputy Chair of Wandsworth
Primary Care Trust and prior to this Joint Chair of South West London Community NHS Trust.
Elisabeth is also currently the Chair and a founding member of the Legal Services Consumer Panel. She has worked across the advice
giving sector where she was previously Director of Policy and Development at the Refugee Council and is a former Trustee of the
Immigration Advisory Service. She is also a former Chair of Wandsworth Citizens Advice Bureaux.
KEYNOTE CONVERSATION PANELISTS
We want you to fully take part in the Keynote Conversation sessions. You can contribute by submitting your questions for
panelists via the following methods:
The benefits and challenges of partnership working in healthcare information and support
Tess Harris - CEO, Polycystic Kidney Disease Charity; President, PKD International; General Secretary,
Ciliopathy Alliance
Tess Harris, MA, FCIM, is President of PKD International and CEO of the UK Polycystic Kidney Disease Charity. She is
General Secretary of the Ciliopathy Alliance, a board member of FEDERG and a European Medicines Agency Expert.
Tess is also a member of the NHS England Renal Transplant Clinical Reference Group and the first patient to chair a
Clinical Study Group for Cystic Diseases within the UK Kidney Research Consortium.
She inherited ADPKD along with 3 siblings (one deceased) from her father (also deceased) and has other affected
relatives: niece, nephew and great-nephews.
Prior to her charity roles, Tess was an entrepreneur in cosmetics, defence, spectacles and online leadership learning. She is a former
international chairman of the Chartered Institute of Marketing, with skills in traditional and digital marketing, research and e-business. In her
spare time, she designs websites and is an aspiring novelist and children’s book writer.
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Twitter: @PiFonline
Professor Jane Dacre - President, Royal College of Physicians London
Jane Dacre was elected president of the Royal College of Physicians in April 2014. She is an honorary consultant
physician and rheumatologist at the Whittington Hospital in North London, Professor of Medical Education and was
former Director of UCL Medical School in London before taking a secondment to become PRCP. She was also the
Medical Director of MRCP(UK) until December 2013 and prior to that Academic Vice President of the RCP.
She was a GMC Council Member, and chaired the GMC Education and Training Committee (2008-2012) and leads a
research programme in medical education focusing on assessment.
She was the Clinical Lead for the development of the first Clinical Skills Centre in the UK, and was a co-author of the
GALS screen. Professor Dacre has been instrumental in the development, implementation and evaluation of assessment systems in
medicine.
Professor Dacre won the Medicine & Healthcare Category for Women in the City Woman of Achievement Award in 2012, was named on the
Health Service Journal’s inaugural list of 50 Inspirational Women in Healthcare in 2013, the Health Service Journal’s Clinical Leaders list in
2014 and 2015, and Britain’s 500 most influential people by Debrett’s in 2015.
Caspar Thomson - Executive Director, NAM
Caspar Thomson is the Executive Director of NAM, one of the world’s foremost NGO providers of independent,
accurate, evidence-based information of HIV and AIDS. NAM provides information to people living with HIV as well
as to the doctors, nurses, healthcare and other professionals working on their behalf. Based in London NAM has
audiences throughout the UK, across Europe and in those resource-limited countries worst affected by the HIV
pandemic.
Caspar’s work in HIV began in 1986 when he was a member of the team that set up London Lighthouse, a residential
and support centre for people with HIV. He later went on to become the Director of the Red Admiral Project, a HIV
counselling service based in West London. Before joining NAM in 2001 Caspar was the Deputy Director of Stonewall, the UK’s human rights
organisation seeking equality and justice for lesbians and gay men.
Anita Ralli - Public Affairs Manager, LEO Pharma
Anita has worked in public affairs and communications for 15 years, specialising in health focused campaigns. She
started her career in the House of Commons before working for a health trade union, and at the leading charity Beating Bowel Cancer - campaigning to influence policy and practice to the benefit of all those affected by the disease.
Since joining LEO Pharma in 2012, she has developed a real passion for all things dermatological and has led a number
of national and local media and public affairs campaigns focused on raising the profile of people living with skin
conditions.
Chris Day - Director of Engagement, Care Quality Commission
Chris has a background in both private and public sector communications operating at a senior level, with more than
20 years’ experience.
He is currently the Director of Engagement for the Care Quality Commission and is responsible for developing and
leading the communication strategy that ensures CQC has effective engagement with all internal and external
audiences across health and social care. He leads a national team responsible for:
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Engagement with the public, all providers of services in health and social care and CQC staff.
●
The development of ‘CQC voice’ through key publications (state of care and the thematic reports).
Before Health, Chris worked in the Transport sector, where he held a number of large operational roles before focusing on Business
Development, Marketing and Communications.
REMINDER!
Don’t forget to post your questions for the
Keynote Conversations at the PIF Stand!
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Twitter: @PiFonline
A joined up vision for partnership working
Jonathan Berry - Personalisation & Control Specialist, NHS England
Jonathan Berry is a Personalisation & Control Specialist at NHS England. He took up this post in November 2015. In this
role he leads on policy development with regard to Health Literacy and Shared Decision Making.
Prior to this Jonathan was the Director of the Community Health and Learning Foundation, a national voluntary
organisation which specialises in delivering Health Literacy programmes in deprived communities, raising practitioner
awareness about the impacts of low Health Literacy, user testing health information with people who have lower levels
of Health Literacy and lobbying policy makers to ensure that health literacy is central to health and other government
policies. He has held this post since 2012.
He has an extensive health background and prior to this he was Executive Director for Health for 5 years at the national charity, ContinYou,
where he project managed the development of the national Health Literacy Programme, Skilled for Health, on behalf of the department of
Health and the Department for Business Innovation and Skills.
Before that, he was Head of Clinical Governance and Public Involvement for Rugby PCT where he introduced the PALS service, the Expert
Patient Programme, set up a Public and Patient Involvement Advisory Group. This role was preceded by a spell running a Community
Health Council and as Director of the West Midlands Health Research Unit. A key part of both these roles was to examine how the NHS
could become more accountable to local communities.
He is committed to ensuring those people who traditionally have had the least say in shaping health services and managing their own
health and wellbeing are given a voice and believes that this can only happen by increasing their Health Literacy – which in turn will tackle
health inequalities.
He is currently a member of the Self-Management UK Advisory Panel and a Trustee of the International Centre of Excellence for
Community Schools.
Maeve Hully - Chief Executive, Patient and Client Council
Maeve has been Chief Executive of the Patient and Client Council since it was established in 2009. Maeve is
committed to advancing the role played by patients and clients, both as partners in their own care experience and in
the planning and delivery of all health and social care services.
Maeve is a registered nurse with over 15 years experience with Marie Curie Cancer Care, where she had a UK wide role
for patient advocacy and involvement.
Arlene Campbell - National Partnership & Consumer Engagement Manager, Health Information Services,
NHS 24
Arlene is currently the National Partnership & Consumer Engagement Manager for Health Information Services at NHS
24. She is responsible for the planning and delivery of strategies, policies and systems for internal as well as external
stakeholder engagement, communications and marketing of digital health & care Information services. She and her
team work with a wide range of stakeholders across all sectors to identify opportunities for collaborative working to
support service development, delivery and evaluation.
With over 20 years experience of working within the NHS in various clinical and health information roles, Arlene is passionate about person
centred service development and facilitating networking and partnership opportunities for those with a role in delivering health and care
information and support to the public.
Mike Ogonovsky – Head of Health and Social Care Informatics, NHS Wales
Mike has been a Registered Nurse and Manager in the Health Service for over 20 years; working in roles from Stroke
Rehabilitation, Emergency Departments, Tissue Viability, Continence, Directorate Manager, Modernisation Manager,
Engagement Manager, Programme Lead and Head of Clinical Informatics.
In his current role Mike is responsible for Clinical Design of applications and information, patient safety, clinical
engagement and patient engagement.
Mike has developed a design which allows patients and carers to engage on line and has spent the last few years engaging
with PIF colleagues, the Third Sector, Health and Policy Leads to get patient information on the agenda to deliver personalised care.
Fiona Carey - Co-Chair, Coalition of Collaborative Care
In addition to her role as a member of C4CC’s Co-production Group, Fiona has been appointed as C4CC Co-Chair.
Fiona worked for thirty years in publishing and higher education, mostly at the Open University. She is co-chair of the
East of England Citizen Senate; a member of the Specialised Urology (Cancer) Clinical Reference Group; a member of
the Wheelchair Leadership Alliance; speaks regularly about patient involvement; and regularly works with NHS England
on a number of initiatives.
A kidney cancer patient since 2001, she’s had a nephrectomy, a pulmonary metastasectomy and, after a Whipple’s
surgery for pancreatic metastases in 2011, she finally retired in 2012, with iatrogenic Diabetes, pancreatic insufficiency and seriously
reduced mobility.
She’s spoken about seven day services and patient-centred care at the NHS England Annual General Meetings, has helped to design and
develop NHS Citizen, chaired the Wheelchair Services Summit with David Nicholson, and is part of the Coalition for Collaborative Care.
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Ask her about basketball, and watch her grin.
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CASE STUDIES SESSION
Case Study Sessions will last for 30 minutes, and will each run twice. If you have selected your Case Study
Sessions in advance the room name for each of the Case Studies will be shown on your name badge.
Peri O’Connor – Healthcare Projects Coordinator, Epilepsy Action (left)
Juliet Ashton – Epilepsy Nurse Specialist - Norfolk Community Health and
Care Trust (right).
Juliet and Peri have been working together to develop the "Epilepsy
Commissioning Toolkit", which is a web-based hub of information, advice
and evidence needed to improve or commission epilepsy services. Informing
the decision making process of service improvements for a Clinical
Commissioning Group's (CCG) population of people living with epilepsy.
There are many forms of information, tools and data which exist for epilepsy, however these can be a challenge
to find and require some knowledge of what is available.
With that in mind the epilepsy voluntary sector, Epilepsy Action and Epilepsy Society, have worked with nine CCGs
to create a process of commissioning steps. The sections will take commissioners and providers through the
commissioning process. The findings and recommendations will be shared in other areas across the country.
Dorchester Library (left side)
Creating a co-produced web-based hub of tools and information to commission
epilepsy services – a voluntary sector and Clinical Commissioning Group partnership
Claire Cohen – Information and Education Manager, Jo’s Cervical Cancer Trust
Claire manages the Information and Education department at national charity, Jo’s Cervical
Cancer Trust. She joined the Trust in 2009 and prior to joining the charitable sector she was an
archaeological scientist.
She is responsible for the development of the charity's health information as well as building
outreach programmes to raise awareness of cervical cancer and ways to prevent the disease
through vaccination and screening. She is part of the senior management team and has a
small but perfectly formed department with two full time members of staff in her team.
Her work always involves demonstrating information need, and integrating user feedback. She’s a big fan of
evaluation and using qualitative and quantitative data to help monitor information success (or failure!).
Over the last two years her work has focused on targeted resources to help create informed choice and reduce
health inequalities.
Twitter: @PiFonline
Twitter: @PiFonline
#pifconf2016
Sloane Room
Producing targeted information for hard to reach groups (case studies involving
collaboration and user involvement) – a voluntary sector approach
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Catherine McShane – Clinical Project Manager, County Durham and Darlington NHS
Foundation Trust
Catherine has 18 years clinical dietetic experience specialising in oral nutritional support. Since
2012 she has been involved in developing the award winning NHS Health Call Undernutrition
service, a telehealth solution to support the treatment of patients who are at risk of
undernutrition which has been evaluated to improve patient care, promote cost effective
prescribing of oral nutritional supplements and increase dietetic capacity. Her current role is
to support other organisations to implement Health Call Undernutrition and develop other products and break
down the barriers of using technology to support health care delivery.
Linacre Room
Developing digital approached to enable lifestyle choices, deliver improved outcomes
and efficiency in self-management – an NHS approach
Melanie J Thomas – National Clinical Lead for Lymphoedema in Wales, Cimla Health and
Social Care Centre
Melanie is a Chartered Physiotherapist and is the National Clinical Lead for lymphoedema
services in Wales. She was instrumental in developing equitable Lymphoedema services in
Wales and now strategically manages the award winning Lymphoedema Network Wales.
Her interest in lymphoedema began in 1997. She subsequently set up the first lymphoedema
service in South West Wales in 2001.
She is currently in her fifth year of a PhD in breast cancer lymphoedema prevention, and has presented and
published widely in delivering innovations in lymphoedema care.
She is the Programme Manager for the delivery of the LVA super micro surgery development and Paediatric
services in Wales.
Kimberley Littlemore – Creative Director, eHealth Digital Media and Littlefox
Communications, Fellow of the College of Medicine, Swansea University
Specialist areas of interest: patient engagement, behavioural change, digital media.
Kimberley is a passionate filmmaker, communications consultant and Fellow of the College
of Medicine, Swansea University who believes in the democratisation of health information.
For ten years Kimberley made and oversaw the creation of content to raise awareness and
funds for Comic Relief on the BBC. She has a unique combination of experience: as an awardwinning BBC documentary maker and a consultant making world-class content for blue-chip global businesses
focusing on driving behavioural change.
She has experience of communicating difficult issues about international development and health to a broad
range of audiences using graphic illustration and story telling. She has a determination to help drive change in
the way we communicate in a fast moving world where digital media allows people to share experiences and
communicate via mobile and desktop computers. Kimberley and her team have created PocketMedic, a digital
platform delivering health information films ‘prescribed’ by clinicians to support their patients to become
‘expert’ in managing their chronic diseases.
Twitter: @PiFonline
Wolfson Theatre
Prescribing film-based information to change patient behaviours: a public private
partnership in Wales
#pifconf2016
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Gordon McLean – National Programme Manager for the Transforming Care After Treatment
(TCAT) project, Macmillan Cancer Support
Gordon completed his nurse training in 1992, following which he specialised in the area of
palliative care. He worked across a number of settings including within the field of HIV/AIDS and
Ceutzfeldt Jakob Disease (CJD). For the last decade he has focussed on service improvement
within healthcare systems within cardiac and cancer services both regionally and nationally.
Since 2013 Gordon has been the National Programme Manager for the Transforming Care
After Treatment programme working for Macmillan Cancer Support. Gordon is leading a programme of work
to improve the services and support provided to those who have been affected by cancer after they have
completed their treatment. This is a 5 year programme with a core focus of the programme being to ensure
that people affected by cancer are at the centre of developments and partnerships to test new approaches to
service delivery, which could be rolled out widely across Scotland.
Simon Malzer - Service User Involvement Manager, Macmillan Transforming Care After
Treatment Programme, Health and Social Care Alliance Scotland (the ALLIANCE)
Simon has a background in community development, social care management and third
sector organisational development. He has worked across a range of settings to encourage
and facilitate the influence of people who use health and social care services on how those
services develop and operate. Simon was involved in the setting up of the Hostels Action
Group for homeless people in Glasgow in the 1980s – one of the first independent user voice
organisations – and his work on person-centred change processes in social care organisations has resulted in
fresh approaches to risk management that put individuals at the centre.
As User Involvement Manager with Macmillan's Transforming Care After Treatment programme, Simon is
working with people who have experience of cancer, whether as patients or carers, to promote partnership
working with professionals in health settings as well as local authorities. The work is locality based as well as
national across Scotland and the TCAT Cancer Experience Panel, the national group of patients and carers who
support the development of user voice within TCAT, is setting new benchmarks for user voice in this field.
Dorchester Library (right side)
Transforming Care After Treatment (TCAT) – New approaches to partnership working
for those affected by cancer- a case study from Scotland
Barbara Donalson – Public Affairs Manager, Janssen
Barbara is the Public Affairs Manager at Janssen UK and is part of the Communications and
Government Affairs team. Her role involves patient engagement and advocacy working directly
with Patient Organisations, NGO’s and Healthcare Teams to develop and support projects and
partnerships that deliver valued patient outcomes.
Barbara has spent the last 15 years working in a variety of roles at Janssen in the UK and Europe,
including sales & marketing, business development and market access. She has developed
a variety of patient focussed initiatives and support programmes which have a strong focus on supporting
inequalities in healthcare and ensuring access to medicines for people when they need them.
James Fitzpatrick - Government Affairs & Patient Advocacy, Janssen UK & Ireland
James joined the Janssen UK communications team as Communications and Government
Affairs Manager in 2014 to lead on haematology communications and support the remaining
therapy areas in the government affairs field. In early 2015 James was given the responsibility
for patient advocacy in the UK as well as retaining the government affairs responsibility. This
compliments James’ experience of having worked in both the charity and political worlds.
Prior to working at Janssen, James had spent several years working in the third (charity)
sector, most recently for an auto-immune patient group heading up the government affairs and campaigns.
For the majority of his career prior to moving over to pharma, James’ experience is from his time in political
communications covering media relations, public engagement, ministerial events, speech writing, campaigns
and crisis management and consultancy.
Censor’s Room
Partnership working with the pharmaceutical industry
11
Twitter: @PiFonline
BEST POSTER COMPETITION
Please view, discuss and vote in the Best Poster Competition.
Posters will be displayed in the Dorchester Library throughout the conference. Delegates will be invited to
view the posters specifically between 11.00-11.30am. You can vote using the Voting Slip provided.
Delegates are asked to judge the posters on the following criteria:
● Is the text displayed on the poster clearly communicated and easy to understand?
● Do you understand what the poster is trying to convey?
● Does the poster have visual appeal and entice you to want to find out more?
● Do you feel the project highlighted in the poster demonstrates partnership working?
● Do you feel the project is something which could benefit patients?
The prize for the Best Poster as judged by delegates will win a £100.00 Amazon voucher and receive an
award which will be presented at the end of the conference.
1
Evaluating an online self-management
programme – Epilepsy and you
Epilepsy and you is an innovative online selfmanagement programme for people with epilepsy.
Epilepsy and you was co-produced with people with epilepsy,
GPs, neurologists, nurses, psychologists and commissioners.
Epilepsy and you is evidence-based. Following an extensive
literature review of what has worked in the design and delivery
of self-management programmes for other conditions, a
Delphi survey, completed by professionals and people with
epilepsy, was used to agree the learning outcomes.
The course supports participants to learn essential epilepsy
information, become an expert in their own epilepsy, try out
new self-management skills and achieve a better quality of life
through self-care.
Researchers at Coventry University are evaluating the
effectiveness of the programme in partnership with
people with epilepsy, volunteers who support them, and
professionals.
The evaluation is due later this year. Feedback received so far
is very promising:
“I am thinking more positively and am just trying to be me
again, and not that man with epilepsy.”
"I thought it was great and I wish I could have done it ten years ago."
“Better sleep and going back to being my happy, positive self something that has been missing since I experienced my first
seizure nearly 7 years ago.”
Presenter: Peri O’Connor
Organisation: Epilepsy Action
Email: [email protected]
2
MS Decisions - developing an
information resource to support shared
decision making
The MS Trust Information Service provides practical,
evidence-based information so that people with multiple
sclerosis (MS) can have informed discussions with health
professionals and make choices that are right for them.
An early choice faced by people with relapsing remitting MS is
whether to start taking one of eleven disease modifying drugs
(DMD) approved for use by the NHS.
The balance between effectiveness of a drug and the risk of
side effects are key factors, but other issues will be important
such as the impact it has on daily life or plans to start a family.
We wanted to provide an online resource which offered
reliable, independent information on the current drugs and
ensure that it would remain accurate as new treatments
become available in the future. We also wanted to make sure
the information was presented in a way that made it easy
for people to see what options were available, consider the
factors that are important to them and compare drugs in a
simple, intuitive way.
The poster will outline the process we followed to develop
MS Decisions www.msdecisions.org.uk.
The project could not have happened
without the collaboration between our
internal project team, people with
multiple sclerosis and MS specialists.
Presenter: Janice Sykes
Organisation: Multiple Sclerosis Trust
Email:janice.sykes
@mstrust.org.uk
12
Twitter: @PiFonline
3
So what is MND, anyway?
Relating to: our publication So what is MND, anyway?
our redeveloped guide for young people aged
13-18 who are close to someone with MND. A visual, but
detailed guide to help teenagers adjust, accept and learn to
manage the impact of a diagnosis of MND in the family, with
guidance on how to get support, especially if they become
young carers. The publication is available as a printed book,
a PDF and also a web app (our first exploration into online
information specifically designed to work effectively on mobile
technology).
URL: you can view the new guide in PDF format at: www.
mndassociation.org/ypinfo Please note: this page will be
updated soon to include the new ‘web app’ version of the
guide.
Purpose of poster: how we sought age appropriate partnership
work for input into the guide, including working with a school, as
well as expert organisations.
Partnerships used: An entire year group of an upper school,
a teacher as project mentor, Winston’s Wish, the online team
at Carer’s Trust (who host the young carer forums, Babble
and Matter) and a group of former young carers (throughout
development).
Poster imagery: commissioned illustrations for the guide, plus
potential for additional photography
Development process: Information Standard members, so
evidence based, user tested and expertly reviewed
Evaluation: as the guide is launching in next couple of weeks,
evaluation for May will rely on early post launch feedback, initial
send outs, traffic to new supporting web pages and test/review
phase feedback.
User engagement: We can draw supporting material from indepth interviews with the young carers who assisted and from
a survey conducted with the school who supported during
initial gathering of expectations and with user testing.
Presenter: Kaye Stevens
Organisation: MND Association
Email:[email protected]
4
Grief: Support for young people
Child Bereavement UK’s poster describes the
rationale behind and development of a free app for
bereaved young people. The app was created by bereaved
young people attending Child Bereavement UK’s Young
People’s Advisory Group and was developed in response to
the lack of accessible resources aimed at their age group.
The app includes information about bereavement and grief
and what to expect, including likely thoughts and feelings and
how to help yourself. It also provides messages from young
people and shares individuals’ experiences in the form of
films, personal stories and direct quotes. The app contains
information that the young people felt important to convey
to others and in particular targets their bereaved peers and
those caring for and supporting them.
Importantly, it outlines how young people can access support
in various other formats ranging from information (both
general and local) to direct face to face support. The poster
also details what this project has taught us about young
people, how they grieve and how best to involve them in
providing support for other young people. To date the app has
been downloaded in over 40 countries worldwide.
Presenter:
Dr. Katie Koehler
Organisation: Child Bereavement UK
E-mail:[email protected]
5
Putting research into action
This poster offers a summary of a user involvement
research project carried out by the Community
Health and Learning Foundation on behalf of UK charity Breast
Cancer Care.
Breast Cancer Care produces a wide range of patient
information in multimedia formats for people facing breast
cancer.
The project looked at how well people with lower levels of
health literacy understood specific pieces of Breast Cancer
Care breast awareness information.
It made a number of detailed recommendations for
improvements to ensure Breast Cancer Care’s important
breast awareness messages are presented in an accessible
way for as wide an audience as possible.
The poster explains the rationale for commissioning the
research, the methodology and it talks about how Breast
Cancer Care made both immediate changes to patient
information based on the findings, and is continuing to use key
learning from the research in its current work.
Presenter: Julia Bell
Organisation: Breast Cancer Care
Twitter: @PiFonline
13
6
Working with Discussion Forums: Good
Sources of Health Information?
Internet users often post health-related questions in
general online discussion forums such as Mumsnet and Reddit,
as well as on more professional, health-branded discussion
sites such as Patient and Health Unlocked. But how accurate
is the information they receive, and what happens when
inaccurate health information is posted? Is there a significant
difference in quality between the information presented on
health branded sites and the more general discussion sites?
How might health information providers work with popular
online discussion sites to ensure users receive the best
information available?
This poster will display results from an academic study
undertaken at Royal Holloway University of London into the
accuracy of health information in online discussion forums.
The study has investigated the type of questions people asked
during the Ebola crisis in West Africa and what information they
were looking for. In what way does poor information fall down
on quality and how do discussion forums react to and manage
poor quality information?
The aim of the project is to determine if well-known general
discussion websites such as Reddit and Mumsnet could be
utilised during a public health emergency to help answer
questions and provide information, particularly if professional
healthcare provision became limited.
Presenter: Jennifer Cole
Oganisation: Royal Holloway, University of London
7
#ConcussionClever
Our poster details the work The Children’s Trust has
undertaken to produce quality information on the
subject of concussion in children.
There has been increased public interest on the topic of
concussion and its potential dangers; including many highprofile stories and even a Hollywood film.
It has also become evident that concussion is something
that is often considered as a minor affliction, something
that it easily recovered from. Many people do not know that
concussion is a type of brain injury.
14
8
Leeds Patient Leader Programme
Our patient leader programme moves away from
tokenistic involvement by working in partnership with
local people. We accept that most people want to share their
personal experiences of healthcare, and that’s OK, but we
can’t commission public services on individual experiences.
We need objective and non-judgemental patient leaders
(champions) to work with us and assure that we consider all
feedback throughout the commissioning process.
Our patient leaders need two things: information about the
needs and preferences of local people, and the confidence
to champion those voices. Our team facilitates a partnership
between patients and professionals which enables shared
learning and support. Our staff empower patient leaders by
providing them with a comprehensive package of information,
training and support. Our patient leaders help our staff by
supporting our engagement processes, ensuring we act on
feedback from the wider public and participating in difficult
commissioning decisions.
This innovative approach to planning services has led to a
culture change in the organisation where patients and staff
work together to meet the needs of the our diverse population.
But don’t take our word for it… ‘The programme gives me
opportunities to champion the needs of diverse communities
in Leeds’ Patient Leader. ‘Patient leaders are key to the
successful delivery of our projects’ Member of staff
Presenters: Kevin Bray and Chris Bridle
Organisation: The NHS Clinical Commissioning
Groups in Leeds
9
Health Call Undernutrition – Using
telehealth to support patients at risk of
undernutrition
Undernutrition is a major problem in the UK with severe
consequences for both individuals and the health economy.
It is estimated that undernutrition costs the English health
and social economy over £19 billion per year. Oral nutritional
supplements (ONS) have been shown to be an effective
treatment but are often prescribed without monitoring for
effectiveness or compliance.
There have also been recent universal guidelines released on
the ‘return to school and activity after concussion’.
Health Call Undernutrition allows remote monitoring of patients
identified at risk of undernutrition. Using simple telephone
technology or a secure web based portal, patients provide
information regarding their weight, ONS compliance and appetite.
This is our reasoning behind producing online material and
supporting campaign on concussion in children, with an aim of
educating families and educational professionals.
Clinicians are alerted if any information entered is outside of
predetermined parameters, allowing proactive treatment that
responds to a patient’s changing needs in a timely manner.
The poster will further detail our aims and objects and will also
reflect our partnering with various clinicians, researchers and
other organisations to create the material, as well as family and
user input.
Health Call has been evaluated to promote self-management,
improve the quality of care, improve patient safety, increase
dietetic capacity and provide cost efficiencies as a result of
more appropriate ONS prescribing.
Presenter: Maria Coyle
Organisation: The Children’s Trust
Presenter:
Catherine McShane
Organisation: County Durham and Darlington
NHS Foundation Trust
Twitter: @PiFonline
The prize winner for the Best Poster
as judged by delegates will win a
£100 Amazon voucher and receive
an award which will be presented at
the end of the conference.
Last year's Best Poster Competition prize winner
10
Partnerships, personas and process:
Reviewing our public information
Over the past year, we’ve been reviewing our public
information. This includes the pages on our website and the
leaflets we publish explaining the standards people should
expect from their care services.
This work has involved some coproduction and partnership
working and has helped us identify who is using our content
and how.
It’s an important step towards offering simple, concise
information that meets all our users’ needs.
Presenter: Owen Griffiths
Organisation: Care Quality Commission (CQC)
11
The Cancer Patient Portal: First steps
towards record access for all patients
with cancer
The Cancer Patient Portal is an innovative initiative to give
cancer patients secure online access to their data held by the
National Cancer Registration and Analysis Service (NCRAS) in
Public Health England.
This joint project between the NCRAS, brain tumour charity
brainstrust and Cancer Research UK is the first step towards
a long-term ambition to offer all cancer patients access to a
comprehensive record of their diagnosis and care along with
relevant supporting information.
Our evaluation of the pilot phase of the project, which ran from
July 2014 to March 2015 found an uptake rate of 24% (95%
cl: 19-29%) among patients offered the portal by their clinical
teams.
By the end of January 2016, 116 patients had requested access
to their records and 81 had accessed them, therefore 70% had
completed the process of accessing their records.
12
The benefits of patient focus group
feedback about cancer information
(Cancer Research UK)
We are redeveloping our patient information in a new style
and format. We already have a panel of lay reviewers who
regularly comment on our patient information. In January
2016, we held a focus group to gather more in-depth feedback
and comments. The group included 11 people affected by
oesophageal cancer.
They looked at our current and new style information about
oesophageal cancer and gave very helpful feedback on the
tone, layout, page format, ease of navigation and level of detail.
They also commented on our use of patient stories in giving a
human touch.
Their feedback was overwhelmingly positive. They found
the information comprehensive, easy to understand, and
sensitively written. So we can feel confident about continuing
with our new style and format.
All the participants said that they really enjoyed the day.
They're all keen to stay involved and contribute their stories
as well as join our lay review panel. They also want to act as
ambassadors for the information.
The poster outlines
■ how we invited participants to the group
■ how we structured the day
■ the feedback
■ the benefits to the organisation of involving patients and
relatives in this way
Presenter: Debbie Coats, Clinical Information Manager,
Patient Information Web Team
Organisation: Cancer Research UK
Patient feedback has highlighted that patients generally
welcome being able to access the information in this way and
would recommend the Patient Portal to others.
Presenter: Neesa Mangalaparathy
Organisation: Cancer Research UK
Twitter: @PiFonline
15
Re-brand our award winning
mental health self help guides
Website, mobile apps or hard copies, it’s up to you
 You choose and design the look
 Support, advice and guidance every step
of the way
 Examples of current customers designs
Health and
Wellbeing
Imperial College
London
Controlling Anger
A self help guide
Live well, work well
www.imperial.ac.uk/health-and-wellbeing/advice-and-support
Western Bay
Health and Social Care programme
SOAS, University of London
re-branded bookcase
Leeds Beckett University
For further information contact:
Tel:
Patient Information Centre 0191 223 2545
Website: www.selfhelpguides.ntw.nhs.uk
SPONSORS & EXHIBITORS
Lead Sponsor
Across England, thousands
of organisations produce
health and care information
for the public which varies
greatly in terms of quality
and reliability. So how can
the public tell whether information is truth or myth?
The Information Standard is a certification programme for all
organisations producing evidence-based health and care information
for the public. Any organisation achieving The Information Standard
has undergone a rigorous assessment of the information production
process to check ensure that the information they produce is clear,
accurate, balanced, evidence-based and up-to-date. high quality,
evidence based, balanced, user- led, clear and accurate.
www.england.nhs.uk/tis
Attendee Bag Sponsor:
Magneto Films is an award winning
video production company that
specialises in health. We work with
charities, the NHS and healthcare
organisations to make films that
deliver change. Our films often feature real people’s stories that
communicate in a deeply personal way. Every film we make is designed
to do something: to inspire, to educate, to be shared, to move people
to action.
We work closely with our clients throughout the production process
from identifying audiences and refining messaging, to developing
creative concepts, advising on case studies and scripting.
Our films are used to provide peer support and patient information,
for campaigns and behaviour change, to demonstrate impact, to show
best practice and innovation through the stories of people's lives. Our
clients include NHS England, Age UK, Dementia UK, Arthritis Research
UK, Beating Bowel Cancer, the Health Innovation Network, Bart’s NHS
Trust, London Health Board, Lewisham Public Health, Buckinghamshire
Public Health, Lancet Midwifery Series and NHS Croydon
Come and have a chat with Magneto Producer and Founder, Gaby Jeffs
at our stand
www.magnetofilms.co.uk
Signage Sponsor:
Streaming Well is an award-winning video
production company specialising in
healthcare communications. We help
healthcare providers tell their stories and
engage with their audience using video.
What sets us apart is that we understand the complex regulatory
environment surrounding the healthcare industry, the underlying science
and the sensitivity of working with patients.
We produce compelling films on-time and within budget.
We offer services such as:
● Patient Case Studies
● Animation
● Live streaming
●
●
Interviews
Conference and event filming
Other Exhibitors:
The AKU Society is an innovative patient-led
organisation offering life-changing support
to families and individuals affected by the
rare genetic disease alkaptonuria (AKU).
They work alongside world AKU experts to help patients understand
and manage the condition, to build a strong, supportive AKU
community and run ground-breaking research to find a cure for one
of the rarest conditions in the world. In 2012, they secured funding for
the first National Alkaptonuria Centre in Liverpool and founded the
DevelopAKUre consortium researching a promising new drug.
www.akusociety.org
The British Heart Foundation is the nation’s heart charity.
For over 50 years we have funded pioneering research
that has led to breakthroughs saving millions of lives. But
cardiovascular disease still kills around one in four people
in the UK. There is still work to be done. Our vision is a
world in which people do not die prematurely or suffer
from cardiovascular disease.
We fight for every heartbeat.
www.bhf.org.uk
Here at Capita
Healthcare Decisions
we have been developing market leading innovative solutions for the
last 16 years.
Our software powered NHS Direct, and continues to support
healthcare providers and insurers all over the world in making better
decisions about their patients – and empowering individuals to make
better decisions about their own health. We are one of the most widely
used clinical triage systems in the world.
Whether you need contact centre tele-triage, patient self-assessment
symptom checkers, patient relationship management software, or
multi-channel decision support we can help.
www.capitahealthcaredecisions.com
The Care Quality Commission is the
independent regulator of health and
adult social care in England. We make
sure health and social care services
provide people with safe, effective, compassionate, high-quality care
and we encourage care services to improve.
Each year, we publish tens of thousands of inspection reports on
hospitals, care homes, home care agencies, GP surgeries, dental
practices and other services. We aim to help people use these – and
our other public information – to make choices about care, understand
the standards they can expect and learn about what they can do when
they experience poor care.
www.cqc.org.uk
Education for Health is an educational
charity, supporting nurses and
healthcare professionals working with
patients living with long term conditions.
Through our clinically led education and training, research and
advocacy work, we play an integral role in enabling healthcare
professionals to deliver the best possible care for patients.
Contact us for your next video project.
Working together in partnership with the Patient Information Forum, we
have developed a new online e-learning unit which we look forward to
trialing with you at the 2016 Annual Conference, do come and see us!
www.streamingwell.com
www.educationforhealth.org
Twitter: @PiFonline
17
Health and Care Videos, a joint venture with Torbay
and South Devon We are Health and Care Videos
and we help trusts, charities, CCGs, primary care,
care providers and platform providers to use video
to improve patient care, save time, save money,
and support self management.
We have a library of over 300 videos that you can buy off the shelf.
We also produce new videos and can help you with planning and
implementation so that more people benefit from your videos. We
provide videos that support acute hospital treatment, and long term
conditions such as Diabetes and Heart Failure.
We also support staff training. In essence we may already have the
videos that you need, and we have the capability to produce new ones
and the experience to help you to implement them.
www.healthandcarevideos.com
Macmillan Cancer Support is the
UK’s leading cancer care charity. We
provide support to patients, carers,
family and friends, from diagnosis,
through treatment and beyond. Our
range of services helps people at a difficult time, so they can start to
take back control of their lives.
We also make change happen; listening to people affected by cancer
and working with high-profile organisations and policy makers to
improve cancer care across the UK.
www.macmillan.org.uk
MHP is an integrated global communications
agency delivering strategic and creative campaigns
across corporate affairs, brand, financial and health.
From multinational corporations to professional
bodies and charities – MHP’s multi-award winning
health team helps to develop compelling policy
communications, delivering both great business results and health
outcomes to transform lives across health and social care.
This requires a knowledge for detail and an understanding of the
bigger picture. We have a passion for the job, but above all, a track
record in delivering results that matter – it is also why we were named
communicators of the year by PharmaTimes in 2015.
NHS 24 provides high quality, national services
to people across Scotland, online and over the
phone. All these services are here to help people
in Scotland look after their own and their family's
health and wellbeing, and include:
NHS inform: information about health, and health and care services in
Scotland.
www.nhsinform.scot
Care Information Scotland: information and advice for carers, people
who need care or are planning for future care needs.
www.careinfoscotland.scot
www.nhs24.com
The National Institute for Health
Research (NIHR) is the research arm
of the NHS and is funded through the
Department of Health to improve
the health and wealth of the nation through research. It is a large,
multi-faceted and nationally distributed organisation. Together, NIHR
people, facilities and systems represent the most integrated clinical
research system in the world.
www.nihr.ac.uk
ProQuest connects people with
vetted, reliable information. Key to
serious research, the company’s
products are a gateway to the
world’s knowledge including
dissertations, governmental and
cultural archives, news, historical collections, and ebooks. ProQuest
technologies serve users across the critical points in research, helping
them discover, access, share, create, and manage information.
The company’s cloud-based technologies offer flexible solutions
for librarians, students, and researchers through the ProQuest®,
Bowker®, Coutts® information services, Dialog®, ExLibris®, ebrary®,
EBL™, and SIPX® businesses – and notable research tools such as the
Summon® discovery service, the RefWorks® citation and document
management platform, MyiLibrary® ebook platform, the Pivot®
research development tool, and the Intota™ library services platform.
www.proquest.com
www.mhpc.com
Molly Olly Wishes supports children with
life limiting or life threatening illnesses
and their families. We do this in various
ways. We grant wishes to the value of
approximately £500. These can be for therapeutic equipment to aid
both physical and emotional wellbeing, or it can be a day out for the
family to spend some much needed quality time together. The wishes
are as rich and varied as the children we help.
We also donate our Olly The Brave packs to over 30 hospitals
throughout the UK. These consist of a soft toy lion and a story book.
Olly has a central line and a detachable mane and supports children
going through a cancer diagnosis and treatment.
We also occasionally make grants available to organisations for specific
projects by organisations supporting the lives of these children.
www.mollyolly.co.uk
UKTelehealthcare is the UK’s
fastest growing membership
organisation for professionals
in the telecare, telehealth
and technology enabled care
sector.
Our 100+ members are drawn from the equipment supply sector,
the service provider sector, the NHS, and emergency services. Our
vision is to promote telehealthcare services to both the public and
professionals working in social care and health.
Throughout the year we run forums for our members for both
information and networking. We run training courses and facilitate
exhibitions called MarketPlace events where we introduce the latest
technology to, again, the public and professionals.
We take pride in being member-focused.
www.uktelehealthcare.com
Sponsorship organised in partnership with
18
Carol Stevenson – Director,
Novus Marketing &
Event Management Ltd.
www.novusmem.co.uk
Twitter: @PiFonline
EXHIBITOR STAND QUIZ SHEET
Visit each Exhibition Stand at the conference, complete the quiz below and then hand in your quiz sheet to the
PIF stand to be entered into a prize draw to win a complimentary place at next year’s conference or a £25.00
Amazon gift card.
Question: Who are the
Assessment and Development
Managers?
Question: The BHF produce hundreds
of free publications, leaflets, DVDs
and more for heart patients, their
families and people who want to learn
more about living healthily. But just
how many people are there living with
cardiovascular disease in the UK?
Answer:
Answer:
Question: What is the
name of the Magneto Films
dog?
Answer:
Question: How many safe patient encounters has
Capita Healthcare Decisions supported?
Answer:
Question: What type of
camera does Streaming Well
use to film patient case studies?
Question: What are the
five key questions CQC
inspections look at?
Answer:
Answer:
Question: What symptom of
AKU is present from birth?
name of Education for
Health’s online learning
platform?
Answer:
Answer:
19
Twitter: @PiFonline
Question: How do you access your
medical records (health records), and
do you need a reason?
Question: Which NHS Trust do Health and Care
Videos partner with?
Answer:
Answer:
Question: How many
people did our info and
support website reach last
year?
Answer:
Question: How can members
of the public become involved
in the research funding
process at NETSCC?
■ Suggesting a topic/research question
■ Reviewing applications
■ Sitting as a public member on a board or panel
Answer:
Question: What proportion of patients
with long-term conditions were
estimated to be missing out on vital
information at diagnosis in MHP and
PIF’s recent report: Is knowledge power?
approximate number of
full-text journals included in
ProQuest Health Research
Premium Collection?
Answer:
Answer:
Question: Where can I find
the central line at Molly Ollly’s
Wishes?
Answer:
Question: The guys
at UKTelehealthcare
are famous for their
exhibition ‘MarketPlace’
events up and down the
country. Where is the next ‘bonus’ ‘MarketPlace’ event
and when is it?
Answer:
Twitter: @PiFonline
#pifconf2016
20
Twitter: @PiFonline
EXHIBITORS MAP
12
13
Refreshment points
14
15
Through to Lecture Hall,
Case Studies, Marketplace
and Reception
16
11
17
10
Buffet station
Through to Lecture Hall,
Case Studies, Marketplace
and Reception
3
2
1
Catering
9
8
7
6
5
4
Stand
Exhibiting organisation
Stand
1
The Information Standard
8
Health and Care Videos
Stand
14
AKU Society
2
Streaming Well
9
Proquest
15
Magneto Films
3
Macmillan Cancer Support
10
British Heart Foundation
16
Education for Health
4
MHP Communications
11
UK Telehealthcare
17
Patient Information Forum
5
CQC
12
Capita Healthcare Decisions
6
NHS 24
13
7
Molly Olly’s Wishes
NIHR, Evaluation, Trials and Studies
Coordinating Centre (NETSCC)
ATENDEES LIST
First Name
Gerry
Mike
Juliet
Jane
Julia
Natalie
Cristina
Jonathan
Kate
Nicki
Tom
Kay
Isobel
Rachel
Michael
Kevin
Surname
Allmark
Arnold
Ashton
Batchelor
Bell
Bennett
Benson
Berry
Betteridge
Bickford
Bishop
Bonetti
Booth
Boothman
Bourke
Bray
Job Title
Director
BII Neurology PVU Head
Epilepsy Nurse Specialist
Head of Marketing and Communications
Head of Publishing
Senior Communications and Patient Relations Manager
Director
Personalisation & Control Specialist
Long-Term Rheumatoid Arthritis Patient
Patient Information Manager
Senior Editorial Officer
Content Editor
Head of Education and Information
Membership Manager
Patient Leader
Organisation
UK Telehealthcare
UCB Pharma Ltd
Norfolk Community Health and Care Trust
Breast Cancer Care
AbbVie UK
Cristina Benson Communications
NHS England
Guy’s and St Thomas’ NHS Foundation Trust
Mind
NHS Choices
Motor Neurone Disease Association
National Voices
NHS Leeds West Clinical Commissioning
Group
21
Twitter: @PiFonline
First Name
Chris
Surname
Bridle
Job Title
Engagement Lead
Dave
Kirsty
Tim
Mel
Brown
Brown
Burdsey
Burton
Sue
Esther
Arlene
Lizzie
Fiona
Helen
Kerry
Debbie
Louise
Claire
Jennifer
Hadrian
Lisa
Linda
Maria
Prof Jane
Stephanie
Elisabeth
Cassie
Chris
Denise
Barbara
Lauren
Mark
Joanna
Alex
Katie
Bruce
Andrea
Grace
Sue
Laura
Jessica
Calnan
Cameron
Campbell
Cardis
Carey
Carter
Chapman
Coats
Coghlin
Cohen
Cole
Collier
Cousins
Cowie
Coyle
Dacre
Dale
Davies
Davis
Day
Dixon
Donalson
Doyle
Duman
Dundon
Earley
Edmunds
Elliott
Elsbury
Everest
Farrington
Fergus
Fielding
Helpline Advisor
Information Officer
Head of Technology
Head of Technology Enhanced Learning Development,
Corporate Services & Finance
Business Development Manager
Senior Information Innovation Officer
National Partnership and Engagement Manager
Project Manager
Co-Chair
Programme Manager
Macmillan Patient Information Lead
Clinical Information Manager
Writer and Editor
Information and Education Manager
PhD Candidate
Company Director
Care Information Developer
Head of Patient Engagement
Information Editor
President
Information Officer
Chair, Patient and Carer Network; Deputy Chief Executive
Information Manager
Director of Engagement
Publications and Information Officer
Patient Advocacy and Engagement Manager
Assessment and Development Manager
Non-Executive Director
National Lead for Knowledge Management
Healthcare Services Director
Health Information Officer
Programme Manager
Improvement Adviser (Information and Support)
Charlie
James
Tracy
Jane
Fisher
Fitzpatrick
Foster
Fox
Amanda
Ellie
Dom
Fry
Gibson
Gilroy
Editorial Manager
Government Affairs & Patient Advocacy Lead
Head of Service Development
Programme Manager, The Information Standard and the
Accessible Information Standard - Delivery Team
CISS Team Lead, Macmillan Mobile Information Service
Patient Information Officer
NHS LKS Development Manager - Yorkshire and Humber
Lesley
Goodburn
Communication and Engagement Partner
Bev
Will
Goodman
Green
Professional Information Developer
Head of Communications
Sarah
Owen
Tess
Greening
Griffiths
Harris
Health Information Co-ordinator
Public Information Manager
CEO, Polycystic Kidney Disease Charity; President, PKD
International; General Secretary, Ciliopathy Alliance
Michelle
Sarah
Susan
Vanessa
Dr Mina
Harrison
Harwood
Haydon
Hebditch
Hinsch
Finance and Operations Manager
Patient Involvement Co-ordinator
Information Manager
Director of Communications and Policy
Research Analyst
Chair
Accessible Information Officer
Public Involvement Adviser
Organisation
Group
Allergy UK
Jo’s Cervical Cancer Trust
Health Innovation Network AHSN
Welsh Government
Cancer Research UK
NHS 24
Patient Choice, NHS England
Coalition of Collaborative Care
Community Health & Learning Foundation
Lynda Jackson Macmillan Centre
Cancer Research UK
Royal Holloway University of London
Byline Communications
Hamell Communications Ltd
The Children’s Trust
Royal College of Physicians
CLIC Sargent
Royal College of Physicians; Arthritis Care
CLIC Sargent
Care Quality Commission (CQC)
Public Health England
Janssen UK and Ireland
NHS Wales Informatics Service
Abbott Nutrition
Breast Cancer Now
Health and Social Care Information Centre
NHS Health Scotland
National Institute for Health and Care
Excellence (NICE)
Care Quality Commission
Janssen UK and Ireland
Nutricia Medical Nutrition UK
NHS England
The Royal Marsden
Bridgewater Community NHS Foundation
Trust
Midlands and Lancashire Commissioning
Support Unit
Northumberland, Tyne and Wear NHS
Foundation Trust
Health Education England
Care Quality Commission
CEO, Polycystic Kidney Disease Charity;
President, PKD International; General
Secretary, Ciliopathy Alliance
PresQIPP CIC
Kidney Research UK
The Migraine Trust
British Liver Trust
Deloitte UK
22
Twitter: @PiFonline
First Name
Abigail
Gary
Greta
Maeve
Tonia
Gary
Tina
Gaby
Ellen
Richard
Linsey
Antonia
Leigh
Surname
Howse
Hughes
Hughson
Hully
Hymers
Impett
Jackson
Jeffs
Jenkins
Jones
Jönsson
Kanczula
Kendall
Job Title
Quality & Inclusion Officer, Cancer Information Development
Assistant Director Corporate Communications
Photographer
Chief Executive
Family Support Team Manager
Market Director
Communications Assistant
Producer Director
Head of Communications
Director of BMA Patient Information Awards
Publishing Manager
Health Content Manager
Communications Manager (Patient Experience and Quality)
Rebecca
Sarah
Vicky
Dr Katie
Natalie
Ania
Isabel
Martin
Kimberley
Kate
Claire
Katrina
Janice
Simon
Kerr
Kidner
King
Koehler
Koussa
Krzykowska
Lawicka
Ledwick
Littlemore
Livesey
Lucas
Lucero
Malone
Malzer
Mike
Nargis
Neesa
Cat
Matt
Dawn
Gordon
Mandelbaum
Mandry
Mangalaparathy
March
McArdle
McCarthy
McLean
Catherine
McShane
Account Manager
Head of Content for Prevention, Survival and Support
Assistant Director of Bereavement Services
Programme Lead – Wellbeing Our Way
Medical Sales Specialist
Associate Director
Head Information Nurse
Communications Consultant
Policy & Programmes Adviser
Research Information Officer
Information and Education Administrator
Information and Support Programme Lead
Service User Involvement Manager, Macmillan Transforming
Care After Treatment Programme
Chief Executive
Medical Writer
Clinical Operations Manager
Information Officer
Content Manager
Information Development Manager
National Programme Manager, Transforming Care After
Treatment project
Clinical Project Manager - NHS Healthcall Undernutrition
Craig
Wayne
Doug
Frederica
Rosalind
Ashley
Linden
Claire
Francis
Nicole
Dawn
Rina
Karen
Jennifer
Peri
Mike
Breige
Rachel
Karen
Menzies
Middleton
Miles
Miller
Moffitt
Moretto
Muirhead
Murray
Namouk
Naylor
Newton
Newton
Nicoll
Noel
O’Connor
Ogonovsky
O’Kane
Ollerenshaw
O’Rourke
Macmillan Programme Manager
Non-Executive Director
Chairman
Editorial Assistant
Inclusive Communications Consultant
Director - Information and Engagement
Joint Head of Operations
CEO
Joint Head of Operations
Marketing and Impact Producer
Managing Director
Director Homecare & Patient Support Programmes
Information and Policy Support Officer
Healthcare Projects Coordinator
Head of Clinical Informatics
Hon. Secretary
Trustee/Founder
Patient Information Centre Co-ordinator
Twitter: @PiFonline
Organisation
NHS Blood & Transplant
Patient and Client Council
Bardet-Biedl Syndrome UK
Boehringer Ingelheim
Magneto Films
British Medical Association
NHS Health Scotland
Asthma UK
Milton Keynes University Hospital NHS
Foundation Trust
MHP Communications
Myeloma UK
Child Bereavement UK
National Voices
ProQuest
MHP Communications
Cancer Research UK
eHealth Digital Media Ltd
Pharmacy Voice
Alzheimer’s Research UK
Health and Social Care Alliance Scotland (the
ALLIANCE)
TB Alert
Cancer Research UK
Mind
Independent Age
County Durham and Darlington NHS
Foundation Trust
Glasgow Life
UK Telehealthcare
Tommy’s
Inklecomms
Multiple Sclerosis Trust
Streaming Well
Magneto Films
CompliMed Ltd
UCB Pharma Ltd
Compassion in Dying
Epilepsy Action
NHS Wales
Lymphoedema Support NI
Northumberland, Tyne and Wear NHS
Foundation Trust
#pifconf2016
23
Twitter: @PiFonline
First Name
Hemant
Bhavin
Vikesh
Gillian
Imogen
Lydia
Charlotte
Helen
Anita
Shahana
Surname
Patel
Patel
Patel
Perry
Pinnell
Powell
Preston
Quayle
Ralli
Ramsden
Job Title
Secretary
Project Manager
Committee Member
Information and Signposting Officer
Editor, Cancer Information Development
Fundraising Officer
Partnership & Engagement Officer
Public Affairs Manager
Senior Co-production Lead
Shalini
Nicholas
Naomi
Rawlley
Ridgman
Roberts
Lizzy
Judith
Aisling
Ciarán
Oliver
Toni
Paul
Eleanor
Peter
Alison
Kaye
Amy
Rodgers
Rogers
Rollason
Scott
Scott
Sidwell
Skinner
Stanley
Stannett
Stemp
Stevens
Street
Senior Content Producer
Lead Editor – UK Health and Care Services
Patient Information Officer and Interpreting/Translation
Advisor
Patient Information Manager
Editor
Health & Research Information Manager
Admin Assistant
Information Services Manager
Information Development Officer
Head of Pharmacy Services Development & Delivery
Writer/Producer
Information Officer
Macmillan Cancer Information & Support Facilitator
Care Information Manager
Assistant Research Manager
Alan
Dr Ken
Janice
Karen
Jane
Alison
Melanie
Caspar
Julie
Ana
Jenna
Deborah
Karen
Rose
Sumner
Sutherland
Sykes
Taylor
Teather
Tebbutt
Thomas
Thomson
Varley
Ward
Warr
Webber
Welsenaer
Westhead
Head of Corporate Affairs
President
Information Officer
Research Director of the Centre for Health Solutions
Information Design Consultant
Information & Support Content Manager
National Lymphoedema Clinical Lead
Executive Director
Member’s Representative
Marketing and PR
Information & Signposting Manager
Writer/Editor
Children and Young People Development Manager
Engagement Officer
Sarah
Emma
Anna
Tracy
Benji
Dan
Richard
Sofiane
Weston
White
Wignall
Williams
Williams
Wills
Wyatt-Haines
Ziad
CISS Team Lead, Macmillan Mobile Information Service
Communications Manager
Health Information Editor
Content Manager, Cancer Information Development
Person Centred Care Manager
Assessment and Development Manager
Director
Editor, Cancer Information Development
Organisation
North East London LPC
Healthwatch East Riding of Yorkshire
The AKU Society
NHS 24
University Hospitals of Morecambe Bay
LEO Pharma
Coalition for Collaborative Care and NHS
England
Bupa UK
Oxford University Hospitals NHS Foundation
Trust
Bloodwise
British Lung Foundation
Children’s Liver Disease Foundation
The AKU Society
Roy Castle Lung Cancer Foundation
The Brain Tumour Charity
Skills in Healthcare
Stories for Health
Arthritis Care
Wye Valley NHS Trust
NIHR Evaluation, Trials and Studies
Coordinating Centre (NETSCC)
Boehringer Ingelheim
Toshiba Medical
Multiple Sclerosis Trust
Deloitte UK
JETDoc
Marie Curie
Lymphoedema Network Wales
NAM
Urostomy Association
Healthwatch Essex
Stroke Association
Group
Astellas
Chest Heart & Stroke Scotland
Velindre Cancer Centre
correct at 16 May 2016
24
Twitter: @PiFonline
OTHER INFORMATION
Cloakroom
A supervised cloakroom is available on the Lower Ground Floor, where you are welcome to leave suitcases
and coats.
WiFi
Free WiFi will be available throughout the venue. No registration code is required, please just sign in.
The RCP WiFi guest network is called “RCP”.
1. Connect via your phone, laptop or tablet to this WiFi network.
There is no password.
Open up your browser (Chrome, Safari, Firefox, I.E., etc.).
You will be redirected to the landing page.
2. To access the internet, click on the WiFi logo that reads “click to login”.
From there you will be redirected to the registration page.
3. You will be asked to enter your email address and to agree to the RCP T&Cs.
Once you have filled in your details, click “enter”.
4. You will be redirected to the RCP homepage to confirm that you are connected.
Once you have seen this page you are free to navigate on the web.
Social Media
To join the conversations about the conference follow us on Twitter: @PiFonline and use the conference
hashtag #pifconf2016
Toilets
Toilets can be found on the Lower Ground Floor of the College. Ladies are to the right of the Cloakroom, and
Gentlemen to the left as you proceed down the stairs.
Photographer
There will be an official photographer at the conference. The photographs will be used by PIF on our website
and in marketing materials for future events. Please let the photographer know if you do not wish to be
photographed.
Feedback
We really value your feedback – it is the only way we can improve what we do. Please use the link below to
provide us with your experiences of the conference as the day progresses, or immediately after the event:
https://www.surveymonkey.co.uk/r/pifconf2016-delegates
Twitter: @PiFonline
#pifconf2016
25
Twitter: @PiFonline
Twitter: @PiFonline
Contact us
#pifconf2016

The Power of Partnership - Patient Information Forum

Transcription

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