INVOLVE newsletter

Summer 2006

Promoting public involvement in NHS, public health and social

care research

Welcome to the Summer edition of the

INVOLVE newsletter. It’s also our national

conference edition, and you will find more

about our plans inside. You will also find our

usual thought provoking medley of articles,

announcements and news. Enjoy!

INVOLVE is a national advisory group,

funded by the Department of Health. If you

would like to find out more about INVOLVE

please visit our website www.invo.org.uk

In this issue:Page:

1 - INVOLVE Conference

2 - Advocacy at A&E for people who

self-harm

3 - Support Unit News

- Interesting articles and publications

4 - SSRG: Supporting good quality research

in Social Care

5 - UKCRN commitment to patient/public

involvement

6 - Participative palliative care research

7 - Public involvement in improving

continence care

8 - Notice board

1

If you would like a copy of the newsletter in an audio or large print version, or ifyou would like it in another format, please contact us.

INVOLVE Conference: People in ResearchWednesday 6th & Thursday 7th September

2006 at the University of Hertfordshire

There are still some places left but don’t leave

it too late! To book a place visit the conference

website:

http://www.profbriefings.co.uk/involve2006/

where you can:

• book and pay online

• view the draft programme

• view accommodation and travel arrangements.

Join us to explore and discuss the following

themed sessions at the conference:

• user led and user controlled research

• tensions of involvement

• identifying and prioritising research

• communication and aphasia Cont Ô

• clinical research

• engaging communities

• developing strategies for involvement

• evaluating the impact of involvement

• children and young people

• commercial research.

We are looking forward to meeting you at the

conference in September. If you have any

questions please contact Professional

Briefings, our conference administrators, by

telephone: 01920 487672 or by email:

london@profbriefings.co.uk

Advocacy at A&E forpeople who self-harmSelf-harm is the term that is used to describe

when someone deliberately hurts or injures

themself. People who self-harm are often in

mental distress and self-harm is linked with

an increased risk of suicide. For many people

who self-harm, Accident and Emergency

departments (A&E) are the only point of contact

with health services, yet service user groups

have voiced concerns about how some people

are treated. Some believe an A&E based

advocacy service would substantially improve

the care of people who self-harm. Advocacy

means speaking on behalf of another person

or supporting them to speak for themselves.

A study at the University of Leeds found out

more about how different groups viewed the

idea of an advocacy service in A&E. From

original idea to dissemination, the project

involved people with personal experience of

self-harm, as researchers, trainers, and

members of the management team.

The researchers interviewed 23 people who

had recently been to A&E following self-harm

(service users), 8 mental health staff, 7 A&E

staff, and 5 mental health advocates. The study

found that attending A&E can be a lonely,

isolating and even frightening place for many

people who self-harm. Most service users

said they would have liked to have been

accompanied by a friend or supportive person,

but more than half went to A&E on their own.

Most said they would welcome having support

from an advocate during any future visit to A&E.

Staff and advocates also said that people

would benefit from support during their visit to

hospital following self-harm, although not all

thought that advocacy was the best, or only,

way to provide this. Service user development

workers based in A&E or specialist nurses

were also suggested. Although there are many

ways in which care for people who self-harm

could be improved, a crisis support service in

A&E would help to meet the main needs of

the service users we interviewed. These were

help with communicating care needs to staff,

reducing feelings of isolation, and finding out

about other mental health and self-harm

services before being discharged from hospital.

Involvement in our project was evaluated to

help us think about what had worked well and

what else we could have done to benefit from

the personal experience of team members.

You can find details of the evaluation along

with the summary and full report from

http://www.leeds.ac.uk/medicine/psychiatry/

index_p.html or from Louise Bryant by email

at l.d.bryant@leeds.ac.uk

Deadline for contributions forour next newsletter: 28th September 2006

We welcome contributions about any aspect

of public involvement in NHS, public health

and social care research. Please ask us for

information about submitting an article.

2

3

It’s goodbye and welcomeWe say a sad goodbye to Philippa Yeeles,

our Research Involvement Officer, who has

moved to a new job as a Programme Manager

at the UK Clinical Research Collaboration

(UKCRC). However we would like to welcome

Maryrose Tarpey in her new role at INVOLVE

as Public Involvement Adviser (Clinical

Research). Maryrose is working closely with

the UKCRC to support public involvement

within clinical research as well as supporting

the INVOLVE Group and undertaking specific

project work on behalf of INVOLVE. Maryrose

can be contacted by telephone: 02380 651088

or email: mtarpey@invo.org.uk

Support UnitNewsDVD and the ‘Colliding Worlds’report

A few years ago INVOLVE commissioned a

piece of research about training. This came

to be known as the TRUE project. Towards

the end of the project we also commissioned

a piece of work to capture the experiences of

those who were involved in the project, which

had high service user involvement. This was

recorded in the report ‘Colliding Worlds.’ Part of

this project included a video box for participants.

Modern technology has caught up with us and

we are now able to distribute a DVD of the

video box with the written report. If you would

like a copy please contact the Support Unit

admin@invo.org.uk

‘Easy read’ summary

An ‘easy read’ summary of the report

commissioned by INVOLVE - ‘User Controlled

Research: Its meaning and potential’ by

Michael Turner and Peter Beresford - is now

on the INVOLVE website. The summary uses

easy words and pictures. The easy read

summary was developed with the help of

Maggie Brennan and Jennifer Taylor from

Lambeth People First with the support of Vic

Forrest.

Public leafletWe had some interest in our new ‘first contact’

leaflet for members of the public who may be

interested in getting actively involved in research

after we mentioned it in the last newsletter.

The leaflet has a space on the back where

you can print your own contact details as a

research organisation or researcher. If you

would like a sample copy please contact us.

Interesting articles andpublications

• New report on public involvement in

research due out soon

The first detailed study of public involvement

in research management has been completed.

‘Evaluation of public influence on the Health

Technology Assessment (HTA) programme’

was commissioned by the National Coordinating

Centre for HTA. It set out to assess the HTA

programme’s efforts to involve the public in

its work, which involves identifying NHS

evidence gaps, and commissioning and

publishing research to fill those gaps. The

report will help to advance the National

Coordinating Centre’s existing work in this

area, as well as being informative for others

who are developing and encouraging public

involvement in all areas of health research.

Led by Sandy Oliver, Reader in Public Policy at

the Institute of Education, University of London,

this research looked at the numbers of public

advocates* involved in the different stages of

the HTA programme, the different Cont Ô

SSRG: Supportinggood quality researchin Social CareBy Chris Russell

SSRG stands for Social Services Research

Group. The group was set up in 1972, when

Social Services Departments (or Social Work

Departments in Scotland) were just being

introduced in local authorities to bring all

support and care services under one roof.

SSRG developed as a network to support

people working on research-related projects

in local authorities around the country.

SSRG produces a regular newsletter and a

journal (Research Policy and Planning) and

organises a variety of training events, seminars

and a three-day Annual Workshop. Over the

years, SSRG has taken on a lobbying and

advisory role, responding to new national

initiatives such as community care, performance

management and, more recently, the Research

Governance Framework. SSRG’s membership

now includes people with research interests

in local authorities, the NHS, academic

institutions and voluntary groups.

Now, social care services are being separated

again. Services for children and young people,

linked with Education and Health, are

increasingly organised by Children’s Trusts.

Adult social care services, including care of

older people and support for people with

disabilities, are organised by local authorities.

Social care services involve a huge network of

partnerships with the NHS, other local authority

departments, housing associations, the

independent sector and voluntary organisations.

SSRG is working out how best to help the

growth of good quality research in this new and

ways they were involved with its work, what

sort of support they were provided with, and

how their input was used by the programme.

The executive summary of the report is due

to be published on the HTA programme

website www.hta.ac.uk later this year.

* Public advocates can include patients; unpaid

carers; parents/guardians; users of health

services; disabled people; members of the

public who are the potential recipients of

health promotion/public health programmes

and organisations that represent service

users and carers.

• UK Health Research Analysis Report

The UK Clinical Research Collaboration

(UKCRC) has published the first ever analysis

detailing the distribution of spending on all

types of health research across all areas of

health and disease in the UK. The report can

be downloaded from the UKCRC website

www.ukcrc.org

If you have written or know of any publications

or articles relevant to public involvement in

research that might be of interest to readers,

please contact Helen Hayes at the Support

Unit with details: hhayes@invo.org.uk

4

5

ever-changing environment. In particular, we

want to increase the active presence in research

of people who use services and people who

are carers. We have recently revised our policy

statement on user involvement and now we

want to take some more active steps to get

users involved in SSRG. If you would like to

find out more about SSRG, including future

training events and the next series of Research

Governance workshops, see the SSRG

website at www.ssrg.org.uk

Chris Russell is a freelance researcher and

trainer based in Shropshire. She is a member

of the SSRG national Executive Committee and

is leading the Research Governance training

programme, funded by the Department of

Health. Contact: chris@barn.abelgratis.co.uk

benefits, and reflects the needs and views of,

patients and the public.

Six Topic-Specific Clinical Research Networks

have been established, covering cancer,

dementias and neurodegenerative diseases,

diabetes, medicines for children, mental health

and stroke, together with a recently established

Primary Care Research Network. All have

committed resources to support PPI. A UKCRN

PPI Working Party has been established to

bring together these Networks, as well

representatives from INVOLVE. This group will

collaboratively discuss and review issues

related to the implementation, development and

evaluation of UKCRN PPI, ensuring knowledge

of other PPI activities occurring outside UKCRN.

Within the UKCRN Coordinating Centre, which

is based in Leeds, Marianne Miles is in post

as the Patient/Public Involvement Lead, to

coordinate PPI activities across the Networks.

She will work closely with Roger Wilson,

UKCRN Associate Director for Patient/Public

Involvement, and Chair of the National Cancer

Research Network’s Consumer Liaison Group,

a group familiar to many.

UKCRN intends to build on the work of the

established Cancer and Mental Health

Research Networks, and develop new

opportunities. By working with patient/public

representatives in addition to clinicians, health

care professionals, researchers and academics,

UKCRN aims to produce guidance that ensures

active involvement, addresses patient/public

issues, reflects their views, and importantly,

meets their healthcare expectations, to improve

clinical research and quality of care across the

country.

Further information is available from MarianneMiles at m.miles@ukcrn.org.uk and Tel: 0207670 4871 or 0113 392 4398. You can visitUKCRN’s website at www.ukcrn.org.uk

UKCRN commitmentto patient/publicinvolvementThe UK Clinical Research Network (UKCRN)

forms one of the key components of a

Department of Health initiative, called the UK

Clinical Research Collaboration (UKCRC).

UKCRC has been set up as a partnership of

organisations including governmental, public

sector, charitable and industrial funding bodies,

working to establish the UK as a world leader

in clinical research. UKCRN is in place to

provide the support to facilitate clinical trials

and other well-designed studies. It is tasked

with developing support for clinical research

in the UK, aiming to improve patient care and

allow people across the country access to the

best treatment. Therefore a common theme

that runs throughout its work is Patient and

Public Involvement (PPI), because UKCRN

believes that active PPI is needed if it is to

achieve a programme of research that directly

and health and social care services. We

conducted individual interviews and small

discussion groups with 25 people who had a

range of conditions that they referred to as

life limiting. Making sense of the research

information (analysis) we had collected was a

very big job and was conducted collectively. The

research information was analysed following

guidelines and was a thoughtful process. When

we put all the information together the pile was

over four inches deep and contained over

140,000 words!

What did we find out?

Eight different but interconnected themes were

identified. These were themes of independence/

dependence, diagnosis, fear, anger/frustration,

grief, relationships, services and difference/

individuality. As well as being a distinct theme

in its own right, independence/dependence

was in fact a central and overarching theme

with a negotiation between independence

and dependence being evident across all

themes. Some of the participants were very

unwell but still wanted choice and control over

things that affected them. Having a say and

being able to influence the help and support

offered to them by health and social care

services was important.

We reflected that the SURAG made a

substantial influence to the research and how

it was conducted. First, in terms of the SURAG

members, personal empowerment was

achieved with members feeling valued and

that their contribution was worthwhile.

Secondly, members’ involvement in a thorough

and complex period of data analysis was both

a huge achievement and influential to the

outcome of the research. Thirdly, the emotional

emphasis of the themes is interesting. The

involvement of service users in analysis offered

the data a fresh perspective seemingly quite

Participatory palliativecare researchBy Phil Cotterell, Worthing & Southlands

Hospitals NHS Trust; and Di Cowdrey,

John Kapp and Mandy Paine, members of

the Service User Research Advisory Group

We have recently completed a research project

and highlight some key points about it here.

The study was known as the ‘Influencing

Palliative Care Project’ and it involved a

researcher and service users with a range of

long-term/life limiting conditions working

together over a three-year period. We were

interested in what people with progressive

conditions like cancer, stroke, HIV+ and

respiratory conditions identified as their needs.

We also wanted to find out more about these

people’s experiences of health and social care

services and life with their particular condition.

The Service User Research Advisory Group

(SURAG)

The aim of the SURAG was to ensure that the

research remained in tune with service user

concerns and needs, and to enable group

members to influence the research at all stages

of the research process. The group was active

at all stages, from the design of the project

through to telling people about our research

findings. This joining together to carry out

research is particularly unusual in palliative care.

The group consisted of nine people in all over

the time span of the project, with most group

members dealing with the consequences of

advanced conditions. Indeed four of the original

members died over the course of the project.

How did we do the research?

Participants were recruited following a ‘mail

out’ to over two hundred local people, groups

6

7

different to research undertaken with

professional researchers taking the lead. The

prioritisation of independence, choice and

control for people with life limiting conditions

that was a key issue highlighted in this research

can be attributed to the integral involvement of

the SURAG.

The report of the research is available on the

Sussex Research Consortium website:

www.sxrc.nhs.uk/consortium_activity/0258.htm

For more information on this project please

contact Phil Cotterell: phil.cotterell@wash.nhs.uk

or 01903 285222 ext 4188.

Public involvement inimproving continencecareNew devices for urinary continence: patients

and carers have a say through the BioMed

Health Technology Cooperative (HTC)

Urinary dysfunction affects 3-5% of the

population, of which about one-tenth will have

a long term indwelling catheter. Even so,

there has been little progress in catheter design

and management in the last 50 years. This

can be put down to a number of factors.

Incontinence can be an embarrassing subject

to talk about. Most people are elderly or

disabled through injury or neurodegenerative

disease, and many require carers to help them

with every day living. In such circumstances,

continence can seem secondary in importance

to other health problems, and users may feel

that they are being offered the best or only

options available.

The BioMed HTC was set up in April 2005

with funding from the Department of Health

under the Health Technology Devices (HTD)

programme to bring together healthcare

professionals, researchers, industry and,

importantly, users to address the challenge of

developing better devices, products and

procedures for this condition. It is a partnership

in which patients and carers are recognised

to have a fully integrated and active role.

Users are represented on the HTD Programme

Board by PromoCon, an integral service of

the charity Disabled Living, which provides

impartial information relating to continence

products and services. PromoCon acts as a link

to other relevant voluntary organisations and

also facilitates the BioMed HTC’s interaction

with patients and carers nationally.

Users are also involved in our research

programmes. One of our projects is to

characterise the needs and abilities of patients

and carers so that new products can be

designed to meet their needs instead of what is

considered important by the medical profession

or industry. For this we will be interviewing

patients individually and asking them to

contribute to focus groups to see what is most

important to them.

To extend the opportunity for participation and

involvement we will be launching a BioMed

HTC membership scheme so that anyone

interested in improving continence care will

be informed as to what is going on in the

BioMed HTC and have the opportunity to

participate in projects and offer comment and

feedback on our activities. We welcome your

involvement.

For further information please go to our website

www.biomedhtc.org.uk or contact: Adele Long,

Director, BioMed HTC, Bristol Urological

Institute, Southmead Hospital, Bristol BS10 5NB

Tel: 0117 959 5526.

Research for Patient BenefitProgramme The Research for Patient Benefit Programme

is looking for members of the public to sit on

their committees. This exciting programme,

part of the National Institute for Health Research

(NIHR) gives a real opportunity for patients

and members of the public to get involved.

Ten funding committees, one for each of the

Strategic Health Authority regions in England

will decide on which projects will be funded in

their regions. The projects will arise from daily

practice in the NHS, with the potential to make

a difference to health or health care experiences.

We are looking for members of the public to

review proposals and to join the funding

committees which meet three times per year.

There will be two patient and public members

on each committee and support tackling jargon.

You can learn more about the programme and

register your interest on the patient and public

involvement pages of the National Institute for

Health Research Central Commissioning Facility

website www.nihr-ccf.org.uk. If you would like

to speak to someone about what is involved,

please phone 0208 943 8990 and they will

arrange to ring you back for a discussion.

INVOLVESupport UnitWessex House

Upper Market Street

Eastleigh

Hampshire SO50 9FD

Telephone: 02380 651088

Textphone: 02380 626239

E-mail: admin@invo.org.uk

Website: www.invo.org.uk

Friendly disclaimer: The views expressed in this newsletter and in any enclosures are those of the

authors and not necessarily those of INVOLVE, the Support Unit or the Department of Health.

Articles are selected for the sole purpose of stimulating ideas and debate on public involvement

in research.

NOTICE BOARDThis is a regular column which can be used to advertise events, initiatives and publications about

public involvement in R&D. If you would like to put an article on our noticeboard please contact the

Support Unit.

Funded by the Department of Health

Consultation into social care researchThe Social Care Institute for Excellence (SCIE)

has launched a UK-wide consultation to get

views from all who work in or use social care

services about the research capacity of the

whole sector. The consultation is on the SCIE

website www.scie.org.uk/scrc/index.asp until

the end of September. A report on the findings

will be published in December. For copies of

the consultation in another format contact:

Social Care Institute for Excellence, Goldings

House, 2 Hay’s Lane, London SE1 2HB

Tel: 020 7089 6840 Textphone: 020 7089 6893

8