@ResearchWales The magazine to showcase health and social care research in Wales
Research Champions
Health and Care Research Wales Magazine - Issue 01 - October 2016
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Shaping the health and wellbeing of future generations
Organ donation - choices, concerns, care
2016 saw the launch of HealthWise Wales
On the 13th December 2015, Wales became
- the largest ever health project to involve
the first UK country to introduce a soft opt-
people living in Wales in research
out system for organ and tissue donation
Health and Care Research Wales Magazine - Issue 01 - October 2016
1
Pag e 1 2
Contents
HealthWise Wales
Page 1 8 Pag e 2 4
Add-Aspirin
Cancer care in a digital world
Pag e 1 4
Organ donation
Pag e 0 3
Page 1 8
Foreword
Cancer care in a digital world
Professor Jonathan Bisson, Director of Health
Patient empowerment
and Care Research Wales
Pag e 0 4
Page 2 0
News
Research champions
Research news from across Wales
Knocking down walls and reducing stigma
Pag e 1 2
Page 2 2
HealthWise Wales
Cutting-edge research
Shaping the health and wellbeing of future
Innovation and collaboration at BRAIN
generations
Pag e 1 4
Page 2 4
Organ donation
Add-Aspirin
Choices, concerns, care
Wales Cancer Bank secures key role in the largest clinical trial in the world
Pag e 1 6
Page 2 6
Diabetic retinopathy screening
Calendar
Research progress in Wales
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Health and Care Research Wales Magazine - Issue 01 - October 2016
Foreword
Welcome to the first issue of @ResearchWales
how best to facilitate this.
establishing a level of collaboration that is unique in the United Kingdom.
magazine. Earlier
this
year
we
put
our
public
On 14 May 2015 we officially launched
involvement, engagement and participation
There are challenges ahead, and there may be
Health and Care Research Wales. Our first
aspirations centre stage with the launch of
a degree of uncertainty following the result
year has been characterised by success,
HealthWise Wales. Creating a more research-
of the referendum on the UK’s membership
delivery and realigned priorities. I am proud
aware population by growing sign-up will
of the European Union. I am confident that
of the progress we have made and delighted
make us all the more relevant and responsive
we can emerge with strength from this. The
to see some of our achievements highlighted
to the people of Wales. I encourage everyone
focus of Health and Care Research Wales will
on the pages of this first edition of our new
to get behind this exciting flagship initiative.
continue to be on ensuring that Wales is a great place to do research and has a thriving
magazine. I am particularly pleased with the progress we
research community that works closely with
Our vision is for Wales to be internationally
have made to further the social care research
the public and other stakeholders to co-
recognised for its excellent health and social
agenda. In addition to Wales’ established
produce excellent research.
care research that has a positive impact
areas of social care research excellence,
on the health, wellbeing and prosperity of
new
emerging
@ResearchWales magazine forms part of our
the people in Wales. This is ambitious and
across the Health and Care Research Wales
commitment to championing and publicising
challenging, but achievable, as long as we
infrastructure, for example in palliative
the positive impact that research has in Wales.
continue to embrace a more collaborative
care and kidney disease. Moreover, we are
In this issue, and in future issues, we shall
and integrated approach to research and
developing a genuine partnership with the
hear from individuals from many backgrounds
development.
forthcoming Social Care Wales; The Wales
who make research happen and participate
School for Social Care Research is playing
in it. I look forward to working together to
The health and social services landscape in
an increasingly important role in this and a
ensure that Health and Care Research Wales
Wales is changing, so now, more than ever, it
bespoke knowledge mobilisation pathway is
continues to make a real difference to the
is key that research creates the right impact;
being piloted. This innovative arrangement
people of Wales.
a key theme of our 2016 conference. We
will help to embed research and evidence-
should all take the time to question the work
enriched practice within social services
we do, the positive impact it could have and
practice and improvement in Wales through
areas
of
expertise
are
Professor Jon Bisson, director of Health and Care Research Wales
Health and Care Research Wales Magazine - Issue 01 - October 2016
3
News
B ets i Cadwal adr U niver sit y H ea lt h B oar d
Husband’s invention to help wife’s pregnancy pain could now help women around the world
She said: “Now we have managed to get a proper clinical trial up and running and we are hoping that it will prove our hypothesis that this device is more effective than the standard treatment available.”
Rebecca Burns, Health and Care Research Wales’ industry manager, supported Dafydd with contract and costing support, and
A North Wales businessman, who was inspired to design a special support girdle following
trial set-up, and signposted Mrs Upadhyay to BCUHB’s research and
his wife’s agony during pregnancy, is hoping
development pathway to portfolio
to change the lives of thousands of women
funding. She said: “It has been a
suffering severe pelvic girdle pain.
real pleasure working with Dafydd on this project. From the start he
Ruth Roberts was unable to walk and forced
was committed to not only develop
to use a wheelchair to get around because of
his medical device from a business
the intense pain she suffered while expecting
point of view, but also wanted
her fourth child. It prompted her husband, Dafydd, to develop the harness, which supports the weight of the bump and holds the hip bones in a comfortable position.
to make sure it was scientifically tested by taking it through a research project, so the research evidence could be used by future
Ruth and Dafydd are now working with Betsi
practitioners for the benefit of
Cadwaladr University Health Board (BCUHB),
patient care.”
after approaching Wrexham Maelor Hospital consultant obstetrician Kalpana Upadhyay. As a specialist in high risk pregnancies, Mrs Upadhyay decided it was time to try
Research news from
something new and began to gather a team
across Wales
midwives, experts from the North Wales
For more information on the Harness Gravidarum, visit www.maternity-belt.co.uk
around her of researchers, physiotherapists, Organisation for Randomised Trials in Health and the industry manager from Health and Care Research Wales.
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Health and Care Research Wales Magazine - Issue 01 - October 2016
and research strengths and momentum, as
development research and practice.
well as creating new understandings in social The Wales School for Social Care Research is
care. We are keen to hear from people about
a key part of the Health and Care Research
their ideas about how we can support what
Wales infrastructure and has a mission to
they do and further social care research
contribute to the sustained co-production of
capacity,” said Fiona.
excellent social care research that contributes
Professor Fiona Verity
to policy and practice that makes a difference.
Fiona’s career began in Australia
In her role, Fiona will be working with a team within the School to bridge gaps and
in the early 1980s as a community
strengthen
development worker in aged care.
involvement,
School o f S oc i a l Ca r e R es ea rch
connections social
between
care
public
services
She has subsequently worked
and
research. The team includes Nick Andrews,
in management positions in the
research and practice development officer,
community health sector and held
who is the lead for the development of
policy positions in non-government
evidence-enriched practice in social care
organisations. As an academic, she
Director of School for Social Care Research appointed
programme (DEEP programme), Dr Alison
Professor Fiona Verity has been appointed
Research and Development Centre, Cardiff
Policy Studies at Flinders University,
director of the Wales School for Social Care
University and other organisations across
South Australia over the period 2011-
Research. Based in the College of Health
Wales.
2013. Throughout her career she has
has taught and researched in areas of
Orrell, research fellow based at Bangor
social policy, community development
University, and Richenda Leonard, senior
and social planning. She held the
project officer. The School will be working
position of Dean, School of Social and
closely with CASCADE, Children’s Social Care
been active in community work in the
and Human Sciences at Swansea University, Fiona is a Professor of Social Work and
“The Wales School for Social Care Research is
Social Care with a background in community
an exciting initiative that builds on practice
S wa n sea Tr ial s unit
Can moving early in life impact future development? The Swansea Trials Unit (STU) is playing a pivotal role in designing and delivering trials
Wa les G e ne Pa rk
and rigorous studies which have a wide-
Schools’ Genetics Roadshow
ranging and far-reaching impact and cover
Since it began in 2009, the Wales Gene Park
Professor Hayley Hutchings, Deputy Director
diverse subject areas, including a recent cohort study involving young children.
Schools’ Genetics Roadshow has visited every local authority in Wales, with last year’s event reaching more than 3,600 A-level students in 54 schools and colleges.
Moving and Preventable Hospitalizations, which became a media sensation story in the US. The study investigated the association
With the aim of enriching the A-level students’ genetics learning and giving them an insight into the latest research and advances in the fast-moving field of genetics, the roadshow also gives researchers the chance to engage with school audiences about their work.
of the STU, was lead author on Residential
between moving home in the first year of life and subsequent emergency admissions for potentially preventable hospitalizations. The findings illustrate that children who move frequently may be disadvantaged in terms of their health and development and may need additional support. For more information visit: http://pediatrics.aappublications.org/
voluntary sector.
H ealt h and Car e Re se arch Wal es
Expert training at your fingertips Did you know Health and Care Research Wales offers a comprehensive training programme aimed at those undertaking research in Wales? Specialising in Good Clinical Practice (GCP) training, our expert facilitators also deliver a wide variety of courses including: setting up a research study, communicating with participants, research methods, involving the public and IRAS support training. All our courses are free to NHS and academic staff and you can now register online here: www.healthandcareresearch.gov.wales/ training-registration-form We can also signpost you to a wide range of Health and Care Research Wales’ endorsed online courses, to find out more click here: www.healthandcareresearch.gov.wales/ online-courses
content/138/1/e20152836
Health and Care Research Wales Magazine - Issue 01 - October 2016
5
Velin d re Nhs t rus t
Supporting hospicebased research Equal access to research for patients is a key goal for the health and social care research community in Wales. Implementing studies across care settings, including community and independent healthcare settings, is one
Minister (fourth from right) and Professor Burholt Director of CADR (right of Minister) and the CADR team
challenge to achieving this. Within palliative
Cen tr e for Ageing and D em en tia Research
care, this includes undertaking research in independent hospices without access to NHS
of the Marie Curie Palliative Care Research
Making Wales a dementia-friendly nation
Centre), and supported by Sarah Townsend
The Minister for Social Services and Public
(Velindre NHS Trust research and development
Health, Rebecca Evans, recently visited the
(R&D) manager) and Laura Upton (Velindre
Health and Care Research Wales Centre for
NHS Trust R&D quality assurance officer),
Ageing and Dementia Research (CADR) at
independent palliative care settings in Wales
Swansea University and met with researchers
were surveyed.
to discuss their work.
The project revealed that enthusiasm for
Rebecca Evans said: “The Welsh Government
undertaking research was dampened by lack
invests £43 million annually in health and
of knowledge, lack of resources and concerns
social care research, including more than
about financial and clinical impact. With the
half a million pounds in CADR, because we
support of Velindre NHS Trust, Wales Cancer
are committed to using research to improve
Trials Unit and Marie Curie Palliative Care
health and social care in Wales.
research and development processes. In a project led by Dr Anthony Byrne (director
Research Centre, the project team proposed developing guidance in the form of a research
“Dementia research, and using that research to
governance toolkit for independent hospices.
shape services for Wales’ ageing population, is particularly important and I am encouraged
that Welsh researchers are working to create a world-class research centre here in Singleton Park. “I have met some committed researchers who are working hard to tackle some of the key issues – from the environment for people living with dementia, to the genetics behind Alzheimer’s Disease. Their work will help to make a difference to health and social care and to many people affected by dementia.” Professor Vanessa Burholt, Director of the Centre for Ageing and Dementia Research said: “I was delighted the Minister visited CADR as it shows Welsh Government is committed to this vital area of research. “I am immensely proud of the progress CADR has made in the first year, and during her visit I had the opportunity to explain the latest developments in the Centre.”
The aim of the toolkit is to provide guidance on host organisation roles and responsibilities, improving
knowledge
and
minimising
workload for staff. By demystifying research
Since its launch, CADR has:
governance they hope to empower boards
•
Established Join Dementia Research in Wales
of trustees and managers, as well as clinical
•
Obtained European funding for a Cost Action: Reducing Old-Age Social Exclusion with 30 partner countries
staff, to promote research as part of everyday care in independent hospice settings.
•
Received Catalyst funding from the Ministry of Business Innovation and Employment, New Zealand, to develop a project on ageing, housing and
The toolkit has been developed as a webbased resource to improve accessibility and can be found at http://palliativecare. walescancerresearchcentre.com/research/. It’s also available to download as an App (search the App Store for ‘hospice research’).
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health •
Embarked on an evaluation of cARTrefu - arts in care settings
•
Started to develop the largest sample in the world of DNA and phenotypic questionnaire data for 4,000 people with early onset Alzheimer’s disease
Health and Care Research Wales Magazine - Issue 01 - October 2016
S O U T H EAS T WALES TRIALS U NIT
We lsh a mbu l a nc e s erv ic e tr us t
RAPID response
Cardiff researchers part of award-winning research team for a major study on infections
study was funded by the research arm of the
Researchers from the South East Wales
not always applicable to people consulting in
Trials Unit (SEWTU), based in the Centre
primary care. The DUTY study is the largest,
for Trials Research at Cardiff University,
most comprehensive primary care study
team
of its kind and we believe it has generated
of
an
award-winning
to
help
NHS (the NIHR) after NICE found there was a lack of evidence regarding which symptoms and signs GPs and nurses should use to diagnose UTI in young children in primary care. “Most of the previous studies had been conducted in hospitals, and such evidence is
are
part
Ten paramedics from the Swansea area have
for
research
diagnose
important, clinically useful evidence that
been trained to carry out a procedure usually
urinary tract infections (UTI) in children.
will inform updates of NICE guidance
GPs
undertaken by doctors and nurses, as part of
for managing this important condition.”
a two year study led by the Welsh Ambulance
Results
Service Trust.
Urinary Tract infections in Young children)
Professor Kerry Hood, from the South East
from
the
DUTY
(Diagnosis
of
study, which involved researchers from
Wales Trials Unit said: “I am really proud of the
Researchers have set out to explore whether
universities of Cardiff, Bristol, Southampton,
entire team, and the successful collaboration
Fascia Iliaca Compartment Block (FICB) is
and King’s College London, were published
with colleagues from other universities. This
feasible, safe and acceptable to be carried
in
is a great example of the experience and
the
Annals
of
Family
Medicine.
out by paramedics at the scene of 999
capacity we have here as the largest group of
emergencies, after research suggested that
The study team’s published paper won
academic clinical trials staff in Wales to work
pre-hospital pain relief provided to hip
category
Reproduction,
with any researchers who have a good idea and
fracture patients may be inadequate, and
Genetics, Infection’, in the Royal College
help them see that through to publication.”
the usual analgesia given may cause side
of
effects that affect patients’ general health
Christopher Butler, a GP and Professor of
The full report on the DUTY study is
and recovery.
Primary Care in the Nuffield Department of
available from the NIHR Health Technology
Primary Care Health Sciences, University of
Assessment
Fascia iliaca compartment block involves the administration of a local anaesthetic injection into tissue surrounding the hip joint. The procedure is currently routinely carried out in hospital.
GPs
three:
‘Children,
Research
Paper
of
the
Year.
University Bangor
As part of the Rapid Analgesia for Prehospital Hip
Disruption
attended
by
(RAPID)
study,
emergency
two pain relief options: standard analgesia or
us to answer questions about whether the procedure is effective for patients and worthwhile for the NHS.
(BCUHB)
School
of
and Social
Research interviews have been conducted
FICB.
to a full randomised controlled trial, allowing
Board
a research support service to BCUHB.
fracture will be randomised to receive one of
decision about whether we should proceed
Health University
Trials in Health (NWORTH), which provides
paramedics following a 999 call for a hip
“This feasibility study means we can make a
Library.
North Wales Organisation for Randomised
ambulance
the Welsh Ambulance Service Trust, said:
Journals
Sciences. It was established through the
patients
Leigh Keen, research support officer from
(HTA)
Oxford, co-led the research. He said: “The
with participants to draw out key themes
No rt h wal es organisat ion f o r r a ndomised t r ial s in h ea lt h
of
interest.
This
to
provide
evidence
process that
is
expected
singing
for
breathing is beneficial to patients in Wales.
Can singing really improve respiratory health?
Christine Eastwood, music therapist at BCUHB said: ‘Singing for Breathing is designed to combine three factors: learning about breath awareness and control coupled with
‘Singing for Breathing’ is a community
gentle exercise and the excitement and fun
based
discover
that comes with singing, all experienced
make
within a friendly social group setting.
group
which
singing
aims
“We’ll follow up with patients to assess the
whether
accuracy of paramedic diagnosis, acceptability
difference to the quality of life for patients
to patients and paramedics, compliance of
suffering
from
therapy
to can
respiratory
a
illnesses.
“People with chronic lung conditions make the effort to attend our program regularly; we
paramedics and also measures of pain, side effects, time in hospital and quality of life in
This
qualitative
order to plan a full trial, if appropriate.”
collaboration
research
between
study
Betsi
is
a
would like to find out how Singing for Breathing
Cadwaladr
works for them from their own perspective.”
Health and Care Research Wales Magazine - Issue 01 - October 2016
7
Medical School, is pioneering research into burn and surgical infection. Dr Azzopardi has received the coveted Hunterian Medal from the Royal College of Surgeons in England. The award is given to a body of work which will lead to substantial clinical change in the way patients are treated. Dr Azzopardi, who delivered the Hunterian Oration at the winter meeting of the British
C wm Taf Uni v e rs i t y H ea lt h B oa rd
Association of Plastic Reconstructive and Aesthetic Surgeons said: “Swansea is leading
NHS Wales award win for promoting clinical research and application to practice Healthcare staff were honoured for their outstanding working practices at the annual NHS Wales Awards (23 September 2016). Nine awards were given to NHS organisations across Wales for their innovative work, including a win for Cwm Taf University Health Board. Their study looking at early intervention to treat problems with jaw opening in some head and neck cancer patients, won the category of: ‘Promoting Clinical Research and Application to Practice’.
international
research
which
can,
and
will, change lives. I am delighted to have received the Hunterian Medal. I am fortunate in receiving so much support from both Swansea University Medical School and its research arm, the Institute of Life Science and within the Welsh Centre for Burns and Plastic
Ab ertawe Bro M organnwg U n iv er sit y H ealt h Boar d
Surgeon’s pioneering infection research is honoured with “highest accolade” An Abertawe Bro Morgannwg University (ABMU) Health Board surgeon has been
Kerry Davies, specialist head and neck
awarded one of his profession’s highest
cancer speech and language therapist said:
accolades for his research.
“Speech and language therapy is a relatively small allied health profession, but our input
Ernest Azzopardi, who divides his time
with patients can make a huge difference to
between ABMU’s Welsh Centre for Burns
both their communication and swallowing.
and Plastic Surgery and Swansea University’s
These are two very important factors to most
Surgery at Morriston. I am also inspired by the dedication of colleagues at the Burns Centre, which receives major burns from all over the UK.”
“Infection is a major concern in surgery and especially following severe burns. I am delighted that Dr Azzopardi is leading the way in infection research and its translation into real patient benefit. His research work really could be a global breakthrough for infection control.” Hamish Laing, ABMU Executive Medical Director “The Medical School is one of the UK’s top performers for its research quality and research environment so we are delighted to see Dr Azzopardi set such a high standard with his work.” Professor Keith Lloyd, Dean of the Medical School
people’s quality of life. “We know we make a difference and our patients think we do a good job. Winning this award recognises that. It allows us to promote our role and the significant difference we can make to our patients.
H y w el dda U niver sit y healt h boa r d
Award nomination for Hywel Dda research nurses
“We hope it will also inspire more clinicians to venture into research so that we can
Sarah Jones, lead research nurse, and Helen
contribute to the growing evidence base for
Tench, research nurse, have been named
the work we do.
finalists in the RCN in Wales Nurse of the Year Awards.
“In Cwm Taf we have a very supportive and dynamic multi-disciplinary team in head and
Sarah and Helen, who are based in Bronglais
neck cancer and without the team support we
Hospital, will find out whether they have been
couldn’t have conducted the research.”
successful at the ceremony on 16 November. They were both nominated in the Research in Nursing category by a Sister on the stroke ward for their efforts to educate and engage all nursing staff in research and make it an
8
interesting and captivating concept. Sarah said: “It’s an honour to have been nominated and selected as finalists. Helen and I are delighted to have recognition for the work we do. “We’re specialists in research and use our knowledge to support and enthuse nurses and clinicians. We’re hopeful that in the future research will become embedded as standard in patient care.”
Health and Care Research Wales Magazine - Issue 01 - October 2016
Se cur e A no nym i s e d In for m at i o n L i nkag e
Helping shape the future of data sharing in Ireland When the health research community in Ireland were experiencing challenges in
H ealt h and car e r ese arch wal es
accessing, sharing and linking data, Ireland’s Health Research Board (HRB) undertook extensive
research
internationally
with
agencies already involved in the collection,
Latest Initiatives
use, storage, sharing and linkage of data.
Mentoring Scheme
This included consulting with the Secure
Monday 8 August saw the launch of the
Anonymised
Health and Care Research Wales Mentoring
Information
Linkage
(SAIL)
database.
P owys teach ing healt h boar d
A later report recommended a comprehensive infrastructure for data access and linkage and endorsed several areas of best practice used by SAIL. They’ve since launched the DASSL Model (Data, Access, Sharing, Storage and Linkage).
Powys nurse nominated for the RCN Research Nurse of the Year
Scheme pilot. Health and Care Research Wales funded students (pictured above) and fellows have since been matched with our Senior Research Leaders
in
a
developmental
mentoring
relationship.
A Powys principal investigator for EpAID
It is anticipated that the pilot will last for 12-
SAIL, which was established in 2006, has a
(epilepsy
18 months and, if successful, we’ll be rolling
long track record of information research using
intellectual disabilities), Hayley Tarrant, has
electronic health records. The world class,
been nominated by the research team at
anonymous data linkage system securely
Cambridge University for the RCN ‘Research
Senior Research Leaders
brings together a wide range of routinely
Nurse of the Year’ award.
18 Health and Care Research Wales Senior
nurse
trial
for
adults
with
out the scheme further.
Research Leaders have been selected to
collected data for research, development and Hayley, who is head of learning disabilities,
support, advise and promote research in
impressed the judges with her involvement
Wales. They were appointed following a
SAIL makes a crucial contribution to a Wales-
in the EpAID study. The research team’s work
competitive
wide research resource that is being used
on the study also secured them an excellence
assessed by an external panel of senior
to address important research questions,
award in the category of ‘learning’ at the
health and social care experts in the UK. For
focused on improving population health and
annual Powys Excellence Awards ceremony
a full list of senior research leaders, visit
the services that are provided.
held in March 2016.
www.healthandcareresearch.gov.wales/
evaluation.
process,
with
applications
community/
• SAIL is a Wales-wide research resource focused on improving health, wellbeing and services. Its databank of anonymised data about the population of Wales is world recognised. SAIL receives core funding from Health and Care Research Wales. A range of anonymised, personbased datasets are held in SAIL, and, subject to safeguards and approvals, these can be anonymously linked together to address important research questions.
Powys Teaching Health Board was one of
• SAIL does not receive or handle identifiable data. The commonlyrecognised identifying details are removed before datasets come to SAIL, and so SAIL cannot reconstruct the identifiable datasets.
of commercial partners, including funded
only two Welsh sites who participated in
Specialty Leads
the EpAID study, which was sponsored by
In August 2015, we announced that we would
Cambridgeshire
be recruiting 30 Welsh specialty leads to
and
Peterborough
NHS
Foundation Trust.
champion and support research development
W elsh Healt h Economics S uppo rt S ervice
and delivery. Working across clinical specialities, these
Commercial collaboration The
Welsh
Health
leads
Economics
Support
research to evaluate a novel biotechnology for
management
provide
additional
research
covered by, but extending beyond, our
Service has been engaging with a number
product
will
development and delivery support in areas
of
chronic
regional pain syndrome. The collaboration includes utilising data from a clinical trial and developing an economic model of management for patients with this syndrome.
centres and units. The group will be working towards the creation of a national “community of practice”. They’ll also coordinate and oversee activity at a national (UK) level, providing a national forum to share good practice, successes, opportunities and challenges, and helping influence and shape the clinical research environment.
Health and Care Research Wales Magazine - Issue 01 - October 2016
9
Bevan
department was the first site to successfully
become a University Health Board, the
join in Wales, as well as being the first to
maternity services had supported only a few
recruit in Wales. The study involves training
studies over a ten year period. Since then,
staff, data collection, recruiting patients and
a huge focus has been placed on research
providing fetal fibronectin testing at point of
activity.
care. The quantitative fetal fibronectin test –
Emma
explains:
“Before
Aneurin
which may help improve diagnosis of preterm “The aim is to update and influence practice
labour – is currently part of standard care
through research, to motivate and inspire
and provides a positive or negative result.
staff within the clinical areas, and to ensure
The ability to measure the absolute amount
that families benefit from best practice.”
of fibronectin is new and has the potential to more accurately rule out preterm labour.
With
support
from
the
research
and
development department, the midwifery and
This study is also open in Abertawe Bro
obstetrics team is currently participating in
Morgannwg University Health Board
several nationwide studies, including:
An eur in b e va n u ni v er s it y hea lth boa rd
The C-stich study (Cerclage suture type for stillbirth
an insufficient cervix and its effect on health
by promoting awareness and focussing
outcomes) involves recruiting women who
interventions on reduced foetal movements)
need a cervical suture to prevent preterm
is running across the Royal Gwent, Nevill Hall
birth.
The
Creating a positive research culture within clinical midwifery
AFFIRM
Study
(reducing
and Ysbyty Aneurin Bevan. National results will be published in January 2017.
This study is also open in Abertawe Bro Morgannwg University Health Board
In 2015 Aneurin Bevan University Health
This study is also open in Betsi Cadwaladr
Board (ABUHB) appointed its first clinical
University Health Board
A further three studies are in the process of being set up: The UCON study, looking at
research midwife, Emma Mills. With a focus on not only sourcing, setting up and
The QUIDS study (Quantitative Fibronectin
management of heavy menstrual bleeding,
implementing research studies within the
to help decision-making in women with
ReMIT2, the management of reduced fetal
health board, Emma’s role is to create a
symptoms of preterm labour) began in
movement after 36 weeks of pregnancy, and
positive research culture within clinical
August 2016. The study centre is Birmingham
OASI, management of 3rd and 4th degree
midwifery.
Women’s Health, and ABUHB Maternity
tears.
n e xt issue The work at the Clinical Research Facility
Call for contributions
at University Hospital of Wales, which has been progressed in partnership with manufacturers,
has
also
enabled
new
equipment incorporating blue light laser technology. It has also included robotic
The next issue of @ResearchWales will be
technology for colonoscopy, which will help
available to download in the spring of 2017,
detect cancers sooner and introduce cutting
featuring health and social care research stories from across Wales.
Ca r d if f and val e univer sit y h ea lt h boar d
If you have a story you would like to share please contact the Health and Care Research Wales communications team.
Investment in world leading research
Email:
Investment has been made to provide state
healthandcareresearch@wales.nhs.uk
of the art technology in endoscopy based
Phone:
research into investigation, detection and
02920 230 457
treatment of bowel cancer by Cardiff and Vale University Health Board and Cardiff University.
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edge technology in the area of endoscopy. Dr Graham Shortland, Medical Director of Cardiff and Vale University Health Board, said: ‘This is an excellent example of collaborative working in research with involvement from the NHS, academia, grant awarding bodies and industry. It has significant potential to improve the care we can offer patients in Cardiff and Vale UHB and a wider area throughout Wales. This will also significantly raise the profile and opportunities for research generally.”
Health and Care Research Wales Magazine - Issue 01 - October 2016
on the provision of an incentive to support practice participation in research activity.” Part of the support mechanism is provided by mentorship. “The feedback we have received from practices over the past few years indicates that this is a crucial element to the success of the scheme.” PiCRIS manager Lewis Darmanin said: “At
public h e a lt h wa l es
the end of year one, 16 surgeries were on board with the scheme and just four years
Improving the level of antibiotic prescribing A
collaborative
project
between
Public
Health Wales and Cardiff University School of Dentistry has set out to explore the feasibility of producing individual antibiotic prescribing profiles of dentists in Wales.
on that number has increased to 95 funded GP practices. We have also seen the number of affiliated practices grow to 22, ensuring
P r im a ry CAr e Research in c en tive sch eme
they receive the support they require. We
PiCRIS goes from strength to strength
in all health boards, demonstrating a research
Primary
Care
consistently see engagement from practices
to primary care patients across Wales.”
Leading the project is Dr Anup Karki,
The
Consultant in Dental Public Health at Public
Scheme
Health Wales. He explains: “Previous work by
continues to go from strength to strength
Public Health Wales highlighted that 9% of
with more than 100 GP surgeries across
antibiotics prescribed in primary care in Wales
Wales now active members of the scheme.
(PiCRIS),
Research
focus and desire to offer research opportunities
launched
Incentive in
2012,
were issued by dental practices – a figure that is considered high. Over the last four years,
PiCRIS provides support, mentorship and
we have introduced various interventions
funding to GP surgeries across Wales to
that have led to 22% reduction of antibiotic
promote and develop a strong primary
prescribing by dentists in Wales.
care
research
base
for
high
quality
research studies. The scheme encourages “Analysis of antimicrobial audit data in Wales
local surgeries to make research part of
suggests that it is possible to further improve
daily
routine
through
incentivisation.
the level of antibiotic prescribing in dentistry because many antibiotics are prescribed
PiCRIS member and mentor Mel Davies,
without obvious clinical justification.”
research manager from Ely Bridge Surgery in Cardiff said: “The PiCRIS scheme focuses
The PiCRIS call for 2016/17 has just been launched and is already generating interest from practices who see the benefits of undertaking research.
Application forms
and guidance are available through NHS research and development offices who will inform practices of local deadlines. The final closing date for the return of applications to the Health and Care Research Wales Support Centre is 25 November 2016. To find out more about the scheme and to make an application for the next financial year, visit.: www.healthandcareresearch.gov.wales/ primary-care-research-incentive-schemepicris/
Linking and analysing two databases (the dental prescribing database and General Dental
Services
database)
will
give
researchers opportunity to explore the ways to produce meaningful prescribing profiles
NATI O NAL CENTRE FO R P O P U LATI O N H EALTH AND WELL B EING RE S EARCH
the Research Development Group “Autism Collaborative Research” (ACRe), involving parents, teachers and health professionals.
where it will be possible, for the first time, to
Improving crossagency care for children with autism
correctly identify ‘high prescribers’ so that
“All children with autism should be enabled
appropriate evidence based interventions can
to reach their potential, with their strengths
be used to improve their antibiotic prescribing
recognised
practice in dentistry. Development of such
provided.” That’s the aspiration of a group
a system will also open opportunities for
brought together by researchers working to
further research to trial new interventions.
understand care provision for autistic children.
“We hope that this will contribute towards not
Dr Lisa Hurt from the National Centre for
only the fight against increasing antimicrobial
Population Health and Wellbeing Research
resistance, which is a major public health issue,
(NCPHWR), along with researchers from
but also patients receiving appropriate dental
Cardiff
treatment rather than just a prescription for
University,
antibiotics.”
University of Wales Trinity St David, set up
for dentists working in Wales. Dr Karki adds: “We aim to develop a system
and
University,
appropriate
Cardiff
Swansea
Participants their and
Metropolitan
University
the
stories
description
support
and
were
experiences
Further
of
in-depth
asked in
provided the
to
express
narrative a
problems
qualitative,
form,
powerful faced. creative
enquiry with the groups will now follow, moving beyond describing the problems, to identifying and prioritising solutions.
“While writing has been used to enable participants to give voice to experience, its use in affecting change is underexplored. The work is expected to provide information to inform policy and practice, and to improve cross-agency care for children with autistic spectrum disorders.” Dr Lisa Hurt, NCPHWR
Health and Care Research Wales Magazine - Issue 01 - October 2016
11
Alan Thomas
F e at u red
Shaping the health and wellbeing of future generations
patterns in the data that will give us insights into where we can act to make a difference. People signing up to the study will be asked a series of questions about their lifestyle, health and well-being. Our research team, based at Cardiff and Swansea Universities, will use this data together with the information from NHS records, to find out how we can help people to stay healthy as they get older and support people who are at risk of developing,
February 2016 saw the launch of HealthWise Wales – the largest ever health project to involve people living in Wales in research. Professor Shantini Paranjothy, Professor of preventive medicine at Cardiff University and scientific lead for HealthWise Wales, tells us about her involvement in this ambitious project, which aims to build a picture of the nation’s future health needs.
sport, fantastic landscapes, and a strong cultural heritage. But health wise, we have some of the highest levels of unhealthy behaviours in Europe, which will lead to high levels of long term health problems such as diabetes, joint problems, heart conditions and some cancers. People are also living longer so it’s important we understand how to keep them healthy. Research has a big part to play in providing that understanding and helping our health and social care services to plan for
“
mental health and cancer. Our long-term aim is to follow these people for as long as possible, ideally over a lifetime. That would give us rich, powerful data, with huge value for understanding the causes of diseases and how to prevent them, as well helping to develop treatments and services to support those who are affected. Researchers
HealthWise Wales builds on a strong tradition
large-scale project, using modern technology
of population health research in Wales. We know that it’s not only our biological makeup that determines our health and wellbeing. How we live, where we live, the choices we have an impact. To fully understand how to study large numbers of people, with as
much to be proud of – our achievements in
much diversity as possible, so we can look at
are
working
closely
with
members of the public as equal partners. It’s a to engage people in research and provide opportunities to contribute to the design and conduct of studies. HealthWise Wales should also serve to break down some myths about research and demonstrate how data can collectively save lives.
these factors all interact together we need Wales is a great place to live and there’s
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such as cardiovascular disease, diabetes,
the future.
make, and the environment we live in all
View from a researcher:
or already suffer from, major health problems
Health and Care Research Wales Magazine - Issue 01 - October 2016
”
for the first time.
View from a participant:
“What’s that?” was my first question. My
Ataxia? What’s That?
GP explained that cerebellar ataxia was a rare
Alan Thomas can pinpoint the moment he realised something was wrong. In his kitchen, making sandwiches for work, having to think about where he was placing the knife when buttering the bread. He was later diagnosed with a rare brain condition. Here, Alan tells us about his journey and what motivated him to sign up for HealthWise
speech, and that I was unlikely to meet many
HealthWise Wales
condition that affects limb movement and
Wales. I’ve walked with a wobble for most of my life, and my speech has been
for the co-production of health
I was desperate to know more and keen to find support but I struggled. exhaustion
and
impaired
movement,
to complete the simplest tasks – including buttering bread – I questioned whether there was more to it.
were getting steadily worse. It wasn’t until much later that a locum GP – who was familiar
key research priorities 3. Create a database of
information and support easier to find.
potential participants for
I’ve since become a trustee of Ataxia UK, chairman of Ataxia South Wales
research studies 4. Create a cohort to gather data that are not routinely available from other sources
Wales funded project. A team of researchers at Cardiff University are leading this population research study, working in partnership with Swansea
My GP recommended I take time off work and rest. That didn’t work. Things
2. Invite the public to identify
then that I would make it my mission to make
Health and Care Research
deteriorated and I found myself struggling
research
I
condition. I pretty much decided there and
remember. But that was just how I was; I’d
business. But, as my lack of coordination
1. Actively engage the public in
couldn’t find any help to deal with my
slow and slightly slurred for as long as I can
school, I set up my own electrical contracting
and wellbeing that will:
As well as dealing with symptoms like
HealthWise Wales is a
accepted it. After achieving good grades at
A dedicated research programme
others with the condition.
University. The project aims to recruit 260,000 individuals over a five year period.
and also run a global online support network for patients with ataxia: www.livingwithataxia. org. I strongly believe that more information should be available to patients with rare diseases and, I know from experience, a support network is vital so that the feeling of isolation doesn’t add to patients’ worries.
Last year I signed up for HeathWise Wales. I’m a patient with a rare condition
with my symptoms – referred me to a general
and I know that research can’t happen
neurologist. MRI scans and blood tests
without the input of people like me. I almost
followed. And then I heard the word ‘ataxia’
feel like it’s my duty. I also know that patients can’t expect a cure without research, so I’d encourage everyone – where possible – to get involved, for both today and the future.
If you’re over 16 and live in Wales, you can help us better understand the health of the nation. Young or old, fit or unwell, when you sign up you will be contacted every six months to get an ongoing understanding of your health. Visit www.healthwisewales.gov.wales to
Professor Shantini Paranjothy, scientific lead for HealthWise Wales
sign up.
Health and Care Research Wales Magazine - Issue 01 - October 2016
13
F eatured
Organ donation – choices, concerns, care On the 1st December 2015, Wales became the first UK country to introduce a soft opt-out system for organ and tissue donation. We caught up with Dr Leah McLaughlin, research officer at the Bangor University arm of the Wales Kidney Research Unit, to find out about a project that aims to learn more about families’ stories, thoughts and experiences about the changes to consenting to organ donation in Wales.
qualitative
research
methods,
decision
decision so their families are clear about
making, wellbeing, and intersection between
their decision. Finding out how people have
the arts and social science.
responded to the campaign will be a key element of the project.
When and why did the project start? Who are you working with? The project began in October 2015, in advance of the introduction of the Human
The study is led by Professor Jane Noyes
Transplantation Act (Wales) on 1 December
at Bangor University. We’re working in
2015, and is one of the many partnerships
partnership with NHS Blood and Transplant
and projects set up by the Wales Kidney
Specialist Nurses in Organ Donation (SNODs)
Research Unit.
in North and South Wales. This has provided unique opportunities to explore, for the first
We’ve set out to explore family attitudes,
time, the full range of perspectives, views
actions, decisions and experiences of the new
and attitudes families experience when
ways of consenting to organ donation in Wales
approached about organ donation following a
How did you get started in research?
since the introduction of the Act. We hope the
recent bereavement.
of the changes from the perspective of the
These co-productive research relationships
I’ve long been interested in the people side
people involved in the donation conversation.
have and will be key to the success of the
findings will help us to understand the impact
of research, exploring ways of engaging with individuals and communities. My interests include social health and care, co-production,
14
project. We’re very grateful to the team of The Welsh Government’s media campaign
specialist nurses who have so far put us in
encourages Welsh residents to talk to their
touch with more than 50 families. For the
loved ones about their organ donation
remainder of the project the research team
Health and Care Research Wales Magazine - Issue 01 - October 2016
whether their feelings have changed over time.
“
There’s a real hope that the new law will bring about a cultural shift in the way people view organ donation
We’ll be speaking with families up until July 2017. We’ll then be able to analyse, combine and compare the data with routinely collected anonymised information on organ donor registration figures, opt outs, and organ donor figures in Wales to better understand the big picture.
What do you hope to achieve?
”
There’s a real hope that the new law will bring about a cultural shift in the way people view organ donation. We want to understand more about what is needed to bring about a
would especially like to hear more from
behaviour change to make organ donation
families who felt unable to support the organ
the default position for people in Wales. Is
donation decision of their loved one or close
the media campaign working, or do we need
friend.
to make tweaks to increase support? What are the key tipping points that lead to a decision
What’s the process?
about organ donation during the discussions at these difficult times? These are the sort of
Specialist nurses will complete a questionnaire
questions we’re looking to answer.
after talking with the potential donor family.
• In 2015, 14 people died whilst waiting for a transplant in Wales • Wales became the first nation in the UK to move to a soft opt-out system of consent • Under the deemed consent system, people aged 18 and over and who have lived in Wales for more than 12 months and die in the country are regarded as having consented to organ donation • 30,000 people die in Wales each year but only 330 die in circumstances where they can donate
During the conversation, at an appropriate
There’s a real richness of data from the
time, they ask the family if they would like to
interviews we’ve conducted so we’re positive
participate and send the ‘consent to contact’
that we’ll be able to answer these questions.
form to the research team. The project team
The results from the study will not only be fed
will later set up an interview with family
back to Welsh Government but will be used
members, which can be in whatever format
to inform practitioners working on the clinical
the family wishes, but normally face-to-face.
side of organ donation.
Families are also encouraged to fill out a questionnaire at a later date.
For more information on organ donation, visit www. organdonationwales.org
It’s clearly a difficult time for families but all have reported finding the experience of speaking to an independent interviewer helpful.
As
well
as
asking
about
the
circumstances of their bereavement, we talk generally about organ donation, explore their thoughts on the policy, as well as the media campaign. All stories are different and each offers a unique perspective on how the law change has affected them. We’ll be revisiting
The project is funded by Health and Care Research Wales and led by the Bangor University arm of its Wales Kidney Research Unit. Partners include Cardiff University, NHS Blood and Transplant, Cardiff and Vale University Health Board, and Welsh Government.
families further down the line to find out
Health and Care Research Wales Magazine - Issue 01 - October 2016
15
F eatured
Screening for diabetic retinopathy: research progress in Wales Dr Rebecca Thomas, a postdoctoral research officer in the Diabetes Research Unit Cymru, under the mentorship of Professor Owens, tells us how she hopes her work on diabetic retinopathy screening will bring improvements in the Diabetic Eye Service Wales, and how the research unit is helping countries as far afield as Trinidad, Peru and Bermuda to design their diabetic retinopathy screening programmes.
“
In 2007 I embarked on a PhD project,
exploring the optimal screening intervals for diabetic retinopathy using data from the Diabetic Eye Service Wales (DESW). At the time, annual screening for diabetic retinopathy was recommended.
results
suggested
extending
the
screening interval beyond 12 months, with
earlier discharge of patients being seen by the hospital eye services.
the possible exception of patients known to have had diabetes for longer than 10
In 2012 I began a related study on the
years and on insulin treatment, who should
frequency
continue to be screened annually. The work
retinopathy in respect to risk stratification and
also suggested that people who develop
its cost effectiveness, utilising anonymised
background retinopathy should continue
data from GP surgeries held within the Secure
annual screening to avoid delayed referral
Anonymised
to ophthalmology services should sight
database. This linkage allowed us to consider
threatening retinopathy develop.
additional risk factors for retinopathy such
Medical Journal (2012), showed that annual referrals for diabetic retinopathy were low in people with type 2 diabetes, who didn’t have evidence of retinopathy at initial screening.
of
screening
Information
for
diabetic
Linkage
What followed was a Four Nations Diabetic Retinopathy Screening study, which used data from seven screening programmes: whole nation programmes in Wales, Scotland and Northern Ireland, and four English programmes. The study pooled all diabetes patients and also found that progression to retinopathy was slow if no retinopathy was present. The recommendation to extend screening intervals to two years was made in 2016 after examining evidence by the UK National Screening Committee for those considered to be at low risk. This would substantially reduce health service expenditure, and lessen the inconvenience for people currently attending appointments
The research findings, published in the British
16
The
every year. It would allow the reallocation of resources, providing more frequent screening for people who are at greater risk. More frequent follow-up available at the Diabetes Eye Service Wales would also mean the
Health and Care Research Wales Magazine - Issue 01 - October 2016
• The International Diabetes Federation reports that 1 in 11 adults have diabetes (415 million worldwide) • By 2040, 1 adult in 10 (642 million worldwide) will have diabetes • Diabetic retinopathy is one of the most common causes of sight loss among people of a working age
(SAIL)
• The retinopathy screening check takes about half an hour and involves assessing vision and taking photographs of the retina • Screening is a way of detecting the condition early before the person notices any deterioration in their vision • Diabetic retinopathy is a complication of diabetes, caused by high blood sugar levels damaging the back of the eye (retina). It can cause visual loss leading to blindness if left undiagnosed and untreated
as glycaemic control, blood pressure and
determining the best age (currently 12) to
cholesterol levels. The results – which we
start screening for diabetic retinopathy;
hope will be published before the end of
whether
2016 – showed that while it’s cost effective
(OCT) 3D cameras can be used to improve
to extend the screening interval for people
detection of diabetic maculopathy and
with type 2 diabetes without any retinopathy,
whether retinal images can be used to help
it would not at all be cost-effective for people
detect risk of cardiovascular disease.
with type 1 diabetes. Therefore, annual screening should continue in these patients. We’ll be taking this evidence to the UK National Screening Committee in an attempt to ensure a policy change allows screening to continue on an annual basis for those with type 1 diabetes. As for what’s next within the research unit? I’m currently working alongside Professor Owens, helping to continue developing a screening programme in Trinidad and to initiate new screening programmes in Peru and Bermuda. We are providing advice and guidance on the essential elements of screening for diabetic eye disease, as well as advising on training
Optical
Coherence
Tomography
”
If retinopathy is detected early enough, medical treatment can prevent it progressing and delay the need for hospital eye services. Detecting sight threatening retinopathy early, followed by early treatment, can stop the condition getting worse and prevent severe loss of vision and blindness
on retinal photography and grading of retinal images. Possible future research will include:
Health and Care Research Wales Magazine - Issue 01 - October 2016
17
F e at u red
Cancer care in a digital world
PhD student, Becky Richards, from the Institute of Primary Care and Public Health, School of Medicine at Cardiff University, has been making waves in the digital world with her research study exploring the potential of a mobile phone or tablet ‘app’ to help patients with cancer address their information needs. There are various online tools already available to cancer patients, mainly via large charities such as Macmillan Cancer Support and Cancer Research UK. However, this is the first pilot app of its kind to be developed by the research community in close consultation with patients. Funded by Welsh cancer charity Tenovus, the team has dedicated the last three years to the research and development of the app – which is actually a website on an app platform enabled for smart phones and tablets – with the support of Cardiff-based experts Digital Morphosis. Mobile intervention in medical treatment is on the rise, as is the ownership of smart technology across the UK, with almost three quarters of the UK population owning a smart phone or tablet. Becky told us: “I wanted to take advantage of new technology to support patients in a way that has never been done before. “Our aim is to develop a mobile phone/
One patient involved in the initial consultations said: “I really wanted to know as much as I could ... I wanted to understand it [the cancer], so I’d find this app really useful.”
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Health and Care Research Wales Magazine - Issue 01 - October 2016
tablet app which will improve communication between cancer patients, their relatives and clinicians. We wanted to create something that is tailored to a patient’s own journey – from diagnosis to recovery and all the steps in between.” Patient empowerment is a now a huge part of NHS care – arming patients with the knowledge
to
enable
self-management
during treatment and follow up care. Becky continued: “We want to empower patients to have the confidence – and knowledge – to better manage their health and look after themselves in the best way possible. The development of this app is a huge step in the right direction. “Encouraging cancer patients to ask questions during consultations enables them to achieve a greater understanding of their medical care which, in turn, improves satisfaction with care and reduces anxiety. Although cancer patients often express a desire for more information, they are sometimes uncertain about what questions they should ask or may forget to ask the question during the consultation. “Efforts to improve communication within the consultation, such as patient question prompt sheets (a structured list of questions patients may wish to ask) have, in the past,
App features • Question prompt list – patients often forget to ask key questions during appointments or may have impaired concentration as a result of treatment • Glossary of cancer terms – clinicians can often talk in acronyms and make assumptions about patients understanding of terms • Resources – links to support groups and clinician recommended websites, glossary of medical terms. Patients reported concerns about selecting reliable online content when there were many unreliable sources
been shown to have some benefit. “We wanted to bring these findings alive
• Contact – the ability to save clinician, hospital details and other features to improve patient/clinician communication
digitally and bring patient communication into the 21st century.” In the first stage on the study, Becky interviewed patients undergoing treatment at the University Hospital of Wales and Velindre Cancer Centre in Cardiff to find out whether there was a need for such an app. She then spoke with patients, relatives and clinicians to establish which app features would be highest on their list of priorities and what information those features should include. Stage two saw Becky systematically collate and analyse all data collected and decide which app features to press ahead with. A focus group was then created to test a pilot version of the app.
Early indications show that the features are proving incredibly valuable during treatment but that it would be useful to have had the benefit of the app at diagnosis, which is something Becky is keen to develop further. What does the future hold? Becky has applied for a supplementary grant to continue development of the app during the early part of 2017, enhancing current features and developing new ones in line with patient insight. The team hopes that this additional funding will eventually see the app being available
The third and final stage of the study, which is still underway, has seen the app given to ten
to download by all cancer patients via the Tenovus website in late 2017.
Cardiff University PhD student Becky Richards
local patients to trial during their treatment. Becky is currently gathering their feedback.
Health and Care Research Wales Magazine - Issue 01 - October 2016
19
Fe at u red
Research champions
Research Niziblian
“Knocking down walls and reducing stigma” is how Paul Gauci, communications manager at the National Centre for Mental Health (NCMH), sums up the work of an inspirational group of ‘research champions’.
a calligrapher. He also has bipolar disorder. Here Lann tells us about his experience and why he became a research champion.
“
couldn’t cope.
the centre was founded, the 20 champions are helping to spread the word about NCMH by telling their stories.
One day I parked in a lay-by up on the mountain, switched off my phone and just sat there and cried for hours. And then I did it again the next day. I knew something was wrong and decided it was time to speak to my
Paul explains: “Taking part in research is totally confidential, however some people were keen to share their stories and encourage others to get involved in research – and for that we are hugely grateful. There’s a real feeling that these champions want to help and support people who have had similar experiences.” The Centre – funded by Health and Care Research Wales – has been using the champions to promote their work and research on their website, through social media pages and in newsletters and leaflets. “These
Seven years ago was when everything
changed. I lost my job and I crumbled. I
people who have taken part in research since
adds:
Lann
Lann Niziblian is 45. He’s a husband, a father,
Recruited from a pool of more than 5,000
Paul
champion
20
individuals
are
demonstrating that a mental health problem can happen to anyone, at any time. But they’re also showing that they’re more than their diagnosis, and by demonstrating this they’re playing a huge role helping us tackle stigma.”
GP. My GP diagnosed depression and prescribed anti-depressants. I remained on medication for two relatively stable years, but I now realise I was kindling a manic phase. I began experiencing unusually high moods and made many impractical decisions. It wasn’t until I came across an article on someone with bipolar that I started to put the pieces together. I returned to my GP and was later referred to a psychiatrist. The psychiatrist ‘got me’. I can’t praise her enough. With her help, and the support of my family, I was able to stabilise my moods and stay well. I finally hit upon the right mix of medication and it felt like someone had turned the lights back on. I felt like me again. I made the decision from day one to be honest with my family and friends. The response has been mixed. My immediate family – my
20
Health and Care Research Wales Magazine - Issue 01 - October 2016
wife and children – have been amazing. For that I’m very lucky. But some have been less supportive, totally dismissing my bipolar diagnosis – which I can only put down to a
Calligraphy
lack of understanding.
I’ve always had an interest in calligraphy, and now I’ve been able to start selling my work on Etsy. I’m getting orders through and it’s all going very well. For the first time in ages I’m carrying a pen and paper round with me all the time so I can jot down ideas and sketch things out. I’m really feeling like myself again.
Motivated by my own early experiences of feeling lost and isolated, I didn’t think twice about signing up to become a research champion. The only way we’ll ever tackle illnesses like bipolar is by understanding them, so if I can give a little time now to make a difference for people maybe 10 or 20 years down the line, then why wouldn’t I? Soon after I signed up, my wife, Lydia, decided she too wanted to get involved and became a ‘plus one’. She wanted to do something practical and, having seen me sign up, knew it was such a simple process. She was interviewed by one of the researchers and gave a small blood sample. It took minutes. Being a champion has changed me a little. I now feel empowered to talk about mental health. While I don’t actively open up about bipolar, I’m very happy to answer questions and dispel myths. As for me and the future? I hope to live a stable life. It’s not always easy and I still have difficult times. I don’t want to have bipolar, but I’m accepting that it will always be a part
Lann Niziblian www.inkrdbl.com instagram: @inkrdbl
of me and am learning to live with it.
”
Together we can beat mental illness ncmh.info/help-us/
Health and Care Research Wales Magazine - Issue 01 - October 2016
21
F e at u red
Professor William Gray, director of the Brain Repair And Intracranial Neurotherapeutics (BRAIN) unit, explains how a partnership with one of the world’s leading engineering and scientific technology companies is supporting state-of-the-art clinical care and cutting-edge research.
Cutting-edge research at BRAIN “
Earlier this year we announced that we
were exploring with Renishaw the use of their neurosurgical stereotactic robot to support the translational research taking place at the BRAIN unit. By applying precision engineering to the challenges of functional neurosurgery, this partnership demonstrates Renishaw’s continued
commitment
to
technology
development and patient care in Wales. There are currently only six robots in the UK, and we’re one of two sites carrying out clinical and research work. Donated to the unit by The Oakgrove Foundation and based at the University Hospital of Wales, Cardiff, the new technology will not only allow us to pursue pioneering research, it will improve patient outcomes. We’ve arranged training for theatre staff in Renishaw’s new state-of-the-art Healthcare Centre of Excellence training suite in Miskin, South Wales and the first cases – which will be electro placements for epilepsy surgery – will go ahead before Christmas. In year two we’ll start using the robot to deliver cells and drugs to the brain for Huntington’s disease and other neurological diseases. It’s all excellent news for patients. The increased precision and efficiency of the robot delivers pinpoint accuracy, offering
Robot benefits • Improved spatial accuracy Which in turn leads to: • improved patient outcomes • improved procedure times • increased safety
22
Health and Care Research Wales Magazine - Issue 01 - October 2016
“By understanding each stage of the neurosurgical procedure, from planning through to the surgery and beyond, Renishaw can design products fit for purpose which may contribute to more efficient and cost effective procedures benefiting patients and healthcare providers around the world.”
Stereotactic Surgery: Surgery that’s guided very accurately by an external frame of reference.
Stuart Campbell, clinical sales development manager, Renishaw
The neuromate robot, which offers the most advanced level of stereotactic surgery, maps and defines the target within the brain. A press of a button sees the robot move its arm to the position on the skull where the surgeon needs to enter.
patients access to treatment that is safer, more effective and more convenient.
”
What else is happening at BRAIN? BRAIN Involve A public involvement group made up of people who are, or have been, affected by
The robot will perform stateof-the-art investigations and procedures for patients undergoing brain surgery within Wales.
neurological diseases such as epilepsy, Huntington’s
disease,
multiple
sclerosis
or Parkinson’s disease. The aim is to bring together patients, carers and academics to shape cutting-edge research into neurological and neurodegenerative diseases. Repair-HD Repair-HD (Huntington’s disease) is a four-
Neuroscience Research Unit
year collaborative research project funded
A four bed clinical research facility within the
by the European Union, and coordinated by
University Hospital of Wales, providing safe,
Prof Anne Rosser, deputy director of BRAIN.
high-quality facilities for commercial and
The work plan is to validate differentiation
non-commercial clinical trials.
and preparation protocols of clinical grade
Professor William Gray, is director of the Brain Repair And Intracranial Neurotherapeutics (BRAIN) unit and Professor of Functional Neurosurgery at Cardiff University’s School of Medicine.
stem cells suitable for use in clinical trials in Huntington’s disease, along with development of the patient assessment
BRAIN unit
sclerosis. The Unit brings together experts in a range of fields from Cardiff, Swansea and
protocols, ethical and regulatory frameworks, Brain
Repair
And
Intracranial
Bangor Universities, along with colleagues in
and surgical delivery methods. It’s hoped
The
this will set everything in place to launch a
Neurotherapeutics (BRAIN) Unit is a research
first-in-man clinical trial of stem cell-derived
organisation working to
cell replacement therapy in this devastating
therapies for brain diseases. Their work focuses
Through
neurodegenerative disease.
on
NHS Wales and industry.
develop new research,
innovation
and
neurodegenerative
collaboration, they are working to deliver
conditions such as Huntington’s disease,
new ways to treat neurological diseases and
epilepsy, Parkinson’s disease and multiple
improve life for those affected.
neurological
and
Health and Care Research Wales Magazine - Issue 01 - October 2016
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Add-Aspirin The Wales Cancer Bank has secured a key role in the largest clinical trial in the world.
The Add-Aspirin trial, which has set out to determine whether taking regular aspirin can stop some cancers returning, announced in 2014 that the Wales Cancer Bank, would become one of only two biobanks in the UK to host donated biosamples.
“We want to know how cancer starts, develops, and responds to treatment, and how genetics influence the risk of cancer. That means the biosamples are incredibly valuable to researchers studying cancers, because they allow them to look at the disease in its ‘own environment’. The samples are expected to remain at the Wales Cancer Bank for many years, and it’s hoped that exciting future research can take place so that researchers can better understand this complex disease.
Dr Alison Parry-Jones, who heads up the Wales Cancer Bank – which is part of the Health and Care Research Wales funded Wales Cancer Research Centre – tells us about their role in the trial. “When patients are recruited into the trial, they will also be asked if they would donate a tissue sample from their surgery and a blood sample. Around half of these samples will then be sent to us. “Working closely with the Medical Research Council Clinical Trials Unit (MRC CTU), we ensure all samples collected from recruiting sites are stored and processed in the best possible environment so that they’re fit for purpose for researchers.
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The trial itself is expected to take up to 12 years so it will be some time before results are known. But the possibilities are exciting – as an inexpensive drug with a potential therapeutic role in several common cancers, aspirin could have a huge impact on the global cancer burden.
“
The Wales Cancer Bank was selected as one of the two tissue banks who will host the Add-Aspirin trial sample collection due to their extensive previous experience and successful work on large-scale, international, multi-centre clinical trials, as well as in routine sample collections, including a number of productive collaborations with the Medical Research Council, Velindre’s Cancer Centre and Cancer Research UK. Dr Fay Cafferty, MRC CTU
”
Health and Care Research Wales Magazine - Issue 01 - October 2016
The Add-Aspirin trial is aiming to recruit 11,000 patients to determine whether taking regular aspirin can stop some cancers returning. More than 100 centres in the UK will recruit patients who are having, or have recently had, treatment for early stage breast, bowel, prostate, stomach or oesphageal cancer. It will randomly split the patients into three groups; one taking a placebo, one taking a low dose of aspirin every day and the other taking a higher daily dose. Patients will take the aspirin for five years.
Wales Cancer Bank
Add-Aspirin
The Wales Cancer Bank was set up in 2004 and consented the first patient in 2005.
When is it taking place? Recruitment began in 2015. Participants will selfadminister tablets daily for at least five years and will be actively followed up for five years. The biobank began taking trial samples in October 2015.
A cancer bank is a collection of tissue and blood which has been collected from patients where cancer is a possible diagnosis. Samples are stored to facilitate future research into cancer. The development of more effective, targeted treatment for cancer depends on increased understanding of the molecular mechanisms involved in the initiation of the tumour, its progression, and response and resistance to treatment. Research studies rely on the availability of high quality biological material from patients with cancer and large studies are needed to connect biology with clinical outcome.
Where is it taking place? It is intended that the trial will open in all hospital sites across the UK and will also open in India. Who is funding the study? The trial is jointly funded by Cancer Research UK, the National Institute for Health Research Health Technology Assessment Programme and the MRC CTU. More information: www.addaspirintrial.org
Protect tomorrow by helping today You have a unique opportunity to be part of shaping the health and wellbeing of future generations in Wales. Sign up to take part in Wales’ largest health study now!
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www.healthwisewales.gov.wales healthwisewales@cardiff.ac.uk 0800 9 172 172 @HealthWiseWales
Health and Care Research Wales Magazine - Issue 01 - October 2016
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Calendar
Powys Research, Therapies and Health Sciences Conference
Wales Kidney Research Unit 2016 annual meeting
10 November Hafod y Hendre, Builth Wells
02 December Morriston Hospital, Swansea
Powys will be celebrating the work being done in the county to improve patient centred care.
PRIME Centre Wales Annual Event 2016 15 November Wrexham Ramada Plaza hotel Colleagues and researchers in primary and emergency [including unscheduled] care
Cwm Taf University Health Board Research & Development Conference 24 November Treforest Campus, University of South Wales
are invited to attend the Health and Care Research Wales funded PRIME Centre Wales Annual Event 2016.
Wales Cancer Partnership’s annual event
UK HealthTech
23 November All Nations Centre, Cardiff
06 December Mercure Holland House Hotel, Cardiff
Join the Wales Cancer Partnership’s
The event offers the latest insights from
conference, hosted by the Wales Cancer
key opinion leaders as well as a unique
Research Centre. The event will bring
opportunity to engage with industry, the
together components of cancer research
clinical community and funding bodies.
through a series of talks and workshops.
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Health and Care Research Wales Magazine - Issue 01 - October 2016
MediWales Annual Innovation Awards 13 December National Museum of Wales, Cardiff Health and Care Research Wales sponsored categories:
Research Design & Conduct Service - annual writing retreat 04 - 06 January Metropole Hotel, Llandrindod Wells
• NHS collaboration with industry
This event is a unique opportunity for health
• Efficiency through technology - high
or social care professionals across Wales to attend a 3-day residential grant writing
impact award • Research excellence in the NHS
retreat.
International Clinical Trials Day 20 May Worldwide James Lind conducted the first ever clinical trial looking into the link between vitamin C and scurvy. Since then clinical trials have developed a great deal and every year we celebrate his work and the importance of research in health and social care.
For more events visit www.healthandcareresearch.gov.wales/events
fun din g
Health and Care Research Wales funding scheme launch dates 2016 - 2019 Health and Care Research Wales runs a number of schemes designed to stimulate excellence and support capacity building in health and social care research. For more information visit: www.healthandcareresearch.gov.wales/funding/our-funding-schemes/
2016 September
Clinical Time Research Award 2016 Social Care Research Fellowship Award
November
Research for Patient and Public Benefit (RfPPB) Wales Research Funding Scheme – Health Grant Award
2017 January
PhD Social Care Studentship Award
September
Clinical Time Research Award 2017 Health Research Fellowship Award
November
Research for Patient and Public Benefit (RfPPB) Wales Research Funding Scheme – Social Care Grant Award
2018 January
PhD Health Studentship Award
September
Clinical Time Research Award 2018 Social Care Research Fellowship Award
November
Research for Patient and Public Benefit (RfPPB) Wales Research Funding Scheme – Health Grant Award
2019 January
PhD Social Care Studentship Award
Health and Care Research Wales Magazine - Issue 01 - October 2016
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Lann Niziblian Research Champions page 20
www.healthandcareresearch.gov.wales Join us on our social media channels
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Health and Care Research Wales Magazine - Issue 01 - October 2016