Projects

PE Education for Effective Research (PAGER)

Location
North West

Project Summary

The PAGER project - Public EngAGement and Education for Effective Research – involved two ‘outreach’ public engagement educational seminars about clinical research.

Project Partners

Name:
Professor John Radford
Role:
Clinical Academic Lead for Cancer, MAHSC
Role Description:
Mentor
Name:
Dr Kim Linton
Role:
Cancer Studies
Role Description:
Early Career Researcher
Name:
Nicola Stones
Role:
Project Manager
Role Description:
Mentor

Benefits & Impact

The PAGER project provided us with the funds and resources to develop and validate an effective educational seminar. We adopted a simple and easy-to-understand style of delivery using powerpoint for illustration purposes only. We used a mix of one-to-one, small group and more formal lecture-style delivery, role-play and video. Key themes were repeated at various times during the seminar using different delivery methods. More complex information was delivered in the real-life role-play, which also promoted transparency of the research process and helped to dispel misconceptions. We encouraged two-way interaction with the audience throughout. This ‘template’ will serve as a useful model for future, similar events.

This project provided the opportunity to work with people whom we wouldn’t otherwise have met. Everyone who took part benefitted directly from the experience – they gained in confidence and are motivated to participate in similar activities in the future to educate the public on health matters.

Finally, the PAGER project complemented the strategic goals of its institutional partner, the Manchester Academic Health Sciences Centre (MAHSC). By promoting education and involving the public as ‘citizen scientists’, MAHSC aims to treble the number of patients taking part in clinical research studies over 3 years. PAGER has helped to highlight the relevance and positive impact of research activity in Manchester, dispel public misconceptions of research, and provide invaluable consumer information to improve future public engagement projects. 

Quotes

“Projects like this should help raise the public awareness/profile of clinical research, facilitate consultations around research in clinic, improve accrual and ultimately benefit the patients” Neil Bayman, Clinical Oncologist

Lessons Learnt

Engaging with the public on health care issues is challenging:

  • The public is sceptical about clinical research and, unless directly relevant to them, are unwilling to learn about this subject
  • Traditional advertising methods (flyers, posters, website adverts) are poor at attracting the public to hospital-based health seminars
  • Personal invitations are most effective, but time consuming and hampered in the absence of an established carer-patient relationship
  • Real-life scenarios and interaction with others who are involved in the research process are highly effective tools for communicating complex information to the public and dispelling misconceptions about the research process

Background

Clinical research (clinical trials and translational research) is fundamental for improving understanding and treatment of diseases, and it is incumbent upon researchers to recruit patients to take part in these studies. In 2000, the NHS Cancer Plan set out to improve accrual to clinical trials in England. This drive led to almost 11% of newly diagnosed cancer patients taking part in a clinical trial in 2004, but more needs to be done to attract patients into studies, to result in more rapid improvements in cancer care.

The reasons for not taking part in clinical research are complex and include poor public awareness of the importance of clinical research and fear of the process and consequences of taking part.  

According to a recent survey of 1900 cancer patients at Wisconsin University in the USA, up to 60% of patients are not told about clinical research by their treating team. In the UK, the Department of Health established the NCRI Consumer Liaison Group in 2001 to reach out to the public, raise awareness of clinical cancer research and promote consumer involvement in the design of studies. This organisation advertises mostly to individuals wanting to become more involved in research, inviting them to attend educational courses. They have very few outreach activities aimed at the uninterested ‘man in the street’. Similarly, UK charities such as Cancer Research UK and Macmillan have excellent resources (websites, booklets and informed staff) to educate on all aspects of clinical research, but these are usually only accessed by pro-active individuals on a need to know basis.

Thus, current research-promoting strategies are for the most part only reaching people who are already interested in clinical research and want to know more.

Most media coverage of clinical trials is negative and there is a general misperception that clinical research is harmful to individuals taking part. Take for example the Northwick Park trial in 2006. Six health volunteers suffered life threatening multi-organ failure after receiving a new anti-inflammatory drug being tested in a private early phase clinical trial. After this event, the MHRA introduced even tighter trial regulation to prevent similar occurrences. News coverage failed to point out the very rare nature of life threatening complications in clinical trials and the media makes no attempt to report the overwhelming majority of studies that benefit patients. It is therefore not surprising that this unbalanced representation leads to ill-founded fears about clinical research.

Cancer patients who are averse to clinical research for whatever reason are unlikely to access Cancer Research UK, Macmillan or similar websites and, as discussed earlier, the majority will not hear about research options from doctors/nurses when they become ill. Consequently, unless these patients are referred to a research-active centre, they will be denied the opportunity of taking part in a clinical research study. They may therefore be able to access potentially beneficial new treatments and their clinical course will not help to develop new/better treatment for future patients. 

On the other hand, people who understand the value and purpose of clinical research are more likely to enquire about trial options if treatment is proposed and more willing to participate in clinical research to help themselves and others. This in turn leads to faster completion of studies and improvements in health care. 

Aims & Objectives

  • To engage with patient groups who know little about clinical research or are likely to be sceptical or fearful about taking part in research studies
  • To develop and deliver an effective public educational seminar on the nature and important role of clinical research
  • To promote an attitudinal change to enquire about and consider taking part in clinical research studies in future
  • To use the PAGER experience to develop a sustainable MAHSC programme of public engagement and educational activities aimed at improving consumer involvement for research benefit 

Approach

Pre-event:

Seminars were planned following discussions with MAHSC representatives, Research and Development leads at each Trust, senior colleagues and others with public engagement experience. Advertising material and information leaflets were designed with help from Trust IT departments, as well as CH marketing and cancer information teams.

Seminars were advertised to the public for at least 2 weeks using:

  • NMGH and CH hospital websites (link on front page) and Facebook (for CH event only)
  • Emails / phonecalls to research networks (GMCCRN, GMCLRN and NCRI CLG) and colleagues to invite community workers and patients
  • 10 A2 size colour posters on display in Cancer Centres, postgraduate centre at NMGH, outpatient departments and other public areas at each hospital
  • 500 A5 size colour flyers distributed by research and clinic nurses in outpatient departments
  • Word-of-mouth
  • 50+ personal invitations to outpatients attending NMGH

Event:

The first seminar was held at North Manchester General Hospital (NMGH) on 11th October 2010 and second at The Christie (CH) on 21st October 2010. Seminars were hosted by the early career researcher and invited participants including other research clinicians, research nurses, research scientists, members of research and development and cancer information departments, patients previously or currently participating in clinical research studies and patient representatives.

The seminar included structured sessions:

  • A 15 minute introduction to clinical research by the early career researcher using simple powerpoint slides in an interactive presentation
  • A 3 minute video produced by Oncore UK showing one of our former patients giving his account of the benefits of taking part in translational research
  • A 20 minute re-enactment of a real clinical trial consultation by the doctor, research nurse and patient involved, concluding with a 10 minute interactive Q/A session
  • A 10 minute presentation of the top ten common patient questions about trials presented by an experienced research nurse using powerpoint slides for illustration
  • A 45 minute break with tea / coffee and biscuits during which the audience freely and informally interacted with seminar participants involved in the research process (patients with clinical research experience, research nurses and doctors, scientists engaged in translational research, research and cancer information representatives)
  • A more formal 5-10 minute Q/A session to address questions (verbal and written)
  • Collection of completed feedback forms