Over recent years, the
field of infection and antimicrobial resistance has become a
focus of concern not only for healthcare providers,
professionals and policy makers, but also for patients and
the public. While researchers and practitioners may have
considerable insight into the needs for research within a
particular field they may have less of an insight into the
concerns and issues important to patients and the wider
public and may thus make assumptions based on narrow
perspectives and a ‘media’ focused agenda. This said, there
is an increasing recognition among researchers working in
the field of infection and microbiology that current
initiatives to improve the scope and quality of research
necessitate the inclusion of patient and public
perspectives. However, unlike other specialties, where
service user involvement in healthcare research is well
established, for example cancer and mental health,
researchers in infections and microbiology (with the
exception of Human Immunodeficiency Virus) have little
experience of working with patients and the public to
prioritise, design and conduct research and little or no
access to service users able to contribute in an
authoritative way to the research enterprise.
Workshop
Objectives
In order to establish strong public involvement in
healthcare associated infection research, the Healthcare
Associated Infection Research Network (HCAI-RN) aims to
establish a Service User Research Forum (SURF). In doing so
a SURF Workshop has been designed to attract people from all
walks of life who may have an interest in:
• deciding how best to involve patients and public in future
infection-related research;
• identifying the most important areas for research in this
field;
• becoming involved in developing, designing and conducting
new research;
• keeping the general public informed by publicising
research findings.
The Process
The first SURF Workshop for Healthcare Associated Infection
and Antimicrobial Resistance (HCAI/AR) Research was held on
Thursday 7th February 2008 at Regent’s College Conference
Centre, London and was attended by 10 members of the public
interested in becoming involved in HCAI/AR research. The
morning session commenced with a welcome and general
introduction from Alison Tingle, the HCAI-RN’s Principal
Research Officer. Professor Robert Pratt, Director HCAI-RN,
was introduced and gave a presentation which set the context
for the day. Robert described the National Health Service
and Department of Health (England) strategy for patient and
public involvement and explained why in particular HCAI and
AR are priority fields of research. He then outlined why
service user involvement in this area is so crucial and how
the aims of SURF might address this current deficit.
The morning was then
dedicated to two external speakers, Sarah Buckland, Director
of INVOLVE, and Geoffrey Aitchison, Co-ordinating Secretary
of the Diabetes Research User Group at Warwick University
Medical School.
Sarah delivered a presentation which explained to
participants the work of INVOLVE and what public involvement
in research is all about, providing some examples of areas
of research such as arthritis and breast cancer where
members of the public were actively involved in several
aspects of the research process.
Following this Geoffrey gave a presentation on what it is
like to be involved in a user research group. As the group’s
lay secretary, Geoff outlined his individual and the groups’
contributions to research, which included advising research
staff on all aspects of diabetes research, from first idea
to final result.
After coffee, Simon Jones, SURF Coordinator, gave a short
presentation on the research process, outlining how a
research idea becomes a research proposal and the process
that the proposal goes through from peer review to
commissioning. Participants then gathered together to
undertake a short exercise on assessing/reviewing a research
proposal. Participants were given a sample proposal to read
and asked to consider and discuss as a group how
easy/difficult such an exercise was. Having completed the
exercise participants were then asked to identify the
training needs they themselves might require and training
needs that could be useful to researchers. The list of needs
identified were as follows:
Training needs for users
• Familiarisation with the layout of a research proposal
document and guidance as to how to peer-review and assess
the proposal, e.g. what sections to concentrate on?, how
should feedback be formatted?, what types of comments are
expected?, how much detail is needed? etc.;
• Guidance as to what other resources are available to
research a subject further;
• Information Communications Technology training, e.g. using
internet research resources, PowerPoint, networking with
other service users etc.
Training needs for researchers
• Guidance to make the patient the focus of the research;
• More concise research proposals;
• How to summarise proposals in plain English;
• Focus on key aims and benefits of research;
• How to stratify service users for research (e.g.
MRSA and CDiff patients);
• Defining the scope of a proposal effectively.
Research Priorities
After lunch, Heather Loveday, Deputy Director HCAI-RN, gave
a presentation entitled ‘Setting the Scene’. Participants
were informed about the way in which HCAI and AR is
organised and funded in England. This also included
information on how research is nationally co-ordinated, what
the functions of research networks are, where research
funding comes from and how the research agenda is informed.
Following this, the participants gathered together again for
the second exercise of the day; identifying research
priorities in the following four areas:
1. What do we know about infections?;
2. What is the impact of infection on patients and carers?;
3. How do we improve practice?; and
4. What do we need to do to prevent acquisition and spread?
Heather facilitated this session with a brief presentation
of the four broad areas of research need within this field.
With a nominated spokesperson and scribe, participants
brainstormed where they thought research was needed. The
groups’ initial brainstorming has been returned to the
participants for further elaboration.
The final session of the day,
entitled ‘How Do I Get Involved?’ was led by Alison Tingle.
Alison outlined some of the questions that participants may
want to ask before committing themselves to involvement in
SURF, for example, ‘How often are meetings?’ and ‘Do I get
paid travel expenses?’ She explained what SURF could offer
participants and asked participants to complete the
registration form in their delegate pack should they be
interested in further involvement.
Workshop Evaluation
At the end of the workshop participants were asked to
complete a short evaluation form.
Of those that returned a questionnaire, most had either a
good or excellent overall impression of the event. One
participant commented that the presentations had been
interesting and that there were good opportunities
throughout the day for participant input.
All participants who completed the question agreed that the
workshop had given them a clearer idea of what public
involvement in research was all about and that the
information they received had ‘reinforced previous
knowledge’. The majority of participants agreed that the
workshop had given them an insight into how a research
proposal is assessed, how research is organised and funded,
and how SURF will develop in the future.
The venue and catering were fairly well evaluated. However,
although the venue provided for people with disabilities,
our disabled participants pointed out that future SURF
venues could be more ‘friendly’ to those with disabilities,
e.g. easier access to the disabled facilities.
Over half of the participants thought that the information
and assistance they received prior to the workshop was
either good or excellent, with the vast majority rating the
assistance they received once at the workshop and the
content of their delegate packs as either good or excellent.
SURF Membership
As a result of the workshop, eight delegates signed up to
form the first members of SURF, seven as Core Members and
one as an Associate member. As a Core Member,
participants will be asked to attend SURF meetings (usually
in London) at least two/three times per year. Some
activities will be home based and there may be opportunities
for other activities which involve travel, such as visits to
research centres for meetings with research staff, or
attending conferences. All reasonable travel costs will be
reimbursed. As an Associate Member, participants will be
asked to undertake activities which can be completed from
home. For example, commenting occasionally by post or by
email on: important questions and issues which come up about
HCAIs; the designs of specific studies and research methods;
and the quality of patient leaflets. No travel is required
in this role.
Next Steps
SURF members delegates have until 14 March 2008 to further
expand upon the Research Priorities list that they
created at the event. This list focused on identifying
research priorities in the following areas: What do we know
about infections?; What is the impact of infection on
patients and carers?; How do we improve practice?; and What
do we need to do to prevent acquisition and spread? Once
this process is complete and we have heard back from all
members, we will post a date for the first official SURF
Members
Meeting along with details of our plans for a SURF Training
Day and Open Information Day.
