@ResearchWales Issue 1

@ResearchWales The magazine to showcase health and social care research in Wales

Research Champions

Health and Care Research Wales Magazine - Issue 01 - October 2016

Page 20

Page 12

Page 14

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

2

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.

4

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’).

6

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.

10

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

12

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.”

18

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

23

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!

Register

www.healthwisewales.gov.wales healthwisewales@cardiff.ac.uk 0800 9 172 172 @HealthWiseWales

Health and Care Research Wales Magazine - Issue 01 - October 2016

25

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

27

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