Manchester-led study provides new insight into public interest in medicines research

Researchers at The University of Manchester and Central Manchester University Hospitals NHS Foundation Trust (CMFT) have published data for the first time about public knowledge of and interest in the process of medicines research and development (R&D).  The study, which is part of the wider European Patients’ Academy on Therapeutic Innovation (EUPATI) project, is believed to be the largest peer-reviewed survey of its kind and was published today in the BMJ Open¹.

Medicines R&D describes the entire process of bringing a new medicine to patients – from laboratory studies to clinical studies, then regulatory approval and further evaluation during clinical use.

The data, which is segmented by type of medicines R&D (e.g. safety, clinical trials, patients’ roles), demographics, country, and level of previous experience in the subject area, will help to improve communications with the public about the field.

By providing an extensive insight into people’s knowledge and interests, the researchers hope the data will help drive public involvement in medicines R&D, which is the main objective of the EUPATI project.  Increased engagement and involvement of patients in research has been shown to increase study recruitment/retention and improve patient experience², supporting the delivery of better healthcare through the development of new diagnostics, medicines and devices.

A key finding of the EUPATI research, led by Bella Starling, Director of Public Programmes at CMFT, and Kay Warner, Focus on the Patient Manager at GlaxoSmithKline plc, is that those who had previous experience of medical research were almost five times more likely to report having good or very good knowledge of medicines R&D.  People also indicated that they are keen to learn more, particularly about medicines safety (50%), and personalised and predictive medicine (47%).

“We are all potential patients”, said Kathy Oliver, Co-Chair of EUPATI’s Project Advisory Board and Chair of the International Brain Tumour Alliance.

This possibility emphasises the crucial need for the general public to really understand the numerous stages of medicines development and realise the complex processes that take place before a medicine is available for general use.  EUPATI’s newly-published paper throws a fascinating light on what people already know, and where their learning gaps are. In addition, the paper’s findings are of great value to us as patient advocacy groups because they validate the need for organisations like ours to help increase public knowledge and awareness about medicines research and development.

The study which surveyed almost 7000 people across Europe is part of the European Patients’ Academy on Therapeutic Innovation (EUPATI), a patient-led project, which involves a unique European team of academia, patient advocacy organisations and the pharmaceutical industry. EUPATI has been established to provide scientifically reliable, objective, comprehensive information to the public on the research and development process of medicines to both patients and members of the public.  EUPATI is supported by the Innovative Medicines Initiative (IMI), a partnership between the European Union and the European pharmaceutical industry.

Suzanne Parsons, Health Researcher at The University of Manchester and Central Manchester University Hospitals NHS Foundation Trust and lead researcher for the study, explained: “The survey reveals that over 75 per cent of respondents had no or less than good knowledge about medicines research.  Previous studies have focused on public interest in clinical research, but this is the first time that medicines research has been looked at as a whole and we are able to provide a more holistic view of the subject.

“The data generated through our study will be a powerful tool for the EUPATI project and others who want to engage and involve patients and the public in a specific area of medicines research.”

Ends

Notes to editors

To speak with Bella Starling or Suzanne Parsons, please contact:

Emma Smith

0161 701 2679 / 0782 514 2219
Emma.smith@cmft.nhs.uk

Lucy Prosser

0161 701 0260 / 0782 514 2219
Lucy.prosser@cmft.nhs.uk

To speak with Kay Warner, please contact:

GSK Press Office
020 8047 5502

References

1. Parsons S, Starling I, Mullan-Jensen C, Tham SG, Warner K and Wever K. What the public knows and wants to know about medicines research and development – A survey of the general public in six European countries. BMJ Open 2015.  (http://bmjopen.bmj.com/content/5/4/e006420.full?keytype=ref&ijkey=LJa9LX1il555KeX).
2. Ennis, L. et al.  Impact of patient involvement in mental health research: longitudinal study.  British Journal of Psychiatry (Sept 2013) doi: 10.1192/bjp.bp.112.119818.

About EUPATI

The European Patients’ Academy is a patient-centered team of 30 organisations, led by the European Patients’ Forum, with partners from patient organisations (The European Genetic AllianceThe European Genetic Alliance, the European AIDS Treatment Group and EURORDISEURORDIS), universities and not-for-profit organisations experts in patient and public engagement, along with many European pharmaceutical companies. EUPATI’s common goal is to help patients and members of the public be more aware of/engaged in medicines research and development.

Find out more about the European Patients’ Academy, including our ethics and transparency policies, in seven languages, at:http://www.patientsacademy.eu/index.php/en/news/329-public-views-on-medicines-developmenthttp://www.patientsacademy.eu.

The “European Patients’ Academy on Therapeutic Innovation” project is receiving support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115334, resources of which are composed of financial contribution from the European Union’s Seventh Framework Programme (FP7/2007-2013) and EFPIA companies.

‘What the public knows and wants to know about medicines research and development (R&D) – perspectives from six European countries’

The purpose of the study was to explore the public’s knowledge of, and interest in learning more about medicines R&D in six European countries (Great Britain, France, Germany, Italy, Spain and Poland). The researchers conducted an online survey involving almost 7000 members of the public. Central Manchester University Hospitals NHS Foundation Trust (CMFT) is a leading provider of specialist healthcare services in Manchester, treating more than a million patients every year. Its eight specialist hospitals (Manchester Royal Infirmary, Saint Mary’s Hospital, Royal Manchester Children’s Hospital, Manchester Royal Eye Hospital, University Dental Hospital of Manchester and Trafford Hospitals) are home to hundreds of world class clinicians and academic staff committed to finding patients the best care and treatments.  (www.cmft.nhs.uk)

The University of Manchester, a member of the prestigious Russell Group of British universities, is the largest and most popular university in the UK. It has 20 academic schools and hundreds of specialist research groups undertaking pioneering multi-disciplinary teaching and research of worldwide significance. According to the results of the 2008 Research Assessment Exercise, The University of Manchester is one of the country’s major research institutions, rated third in the UK in terms of ‘research power’, and has had no fewer than 25 Nobel laureates either work or study there. The University had an annual income of £807 million in 2011/12. (www.manchester.ac.uk)