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PRESS RELEASE (12.01.16)

Patient involvement could improve medicines R&D, industry personnel suggest

A new study has revealed a belief among pharmaceutical industry personnel that greater involvement of patients and the public could improve medicines research and development (R&D). The study, which is one of the first of its kind and part of the wider European Patients’ Academy (EUPATI) project, was published today in the BMJ Open.1

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Photo caption: Patients, Industry representatives and academics working together at a recent EUPATI Workshop in Dublin.

Patients have become increasingly involved in managing their own health over recent years. Although still an emerging area, patient involvement in medicines R&D – in which patients are actively involved in research projects and in research organisations – is most visible in public research environments (e.g. the UK’s National Institute for Health Research) and areas where existing treatment options are limited (e.g. rare diseases).

Researchers interviewed 21 pharmaceutical industry professionals, representing 11 companies, from the UK, Spain and Poland, with diverse professional roles including pan-European roles, about their attitudes regarding Public and Patient Involvement (PPI) in medicines R&D.

Most of the professionals had positive beliefs about PPI, and many were optimistic that greater involvement of patients and the public would contribute positively to the medicines R&D process. However, those in Spain and Poland expressed more uncertainty about the benefits and value of PPI than those in the UK or with pan-European roles.

The interviewees also highlighted potential barriers to further PPI activity within the sector, including a sense that the concept was too intangible at the moment to persuade industry leaders of its importance and benefits; that organisational codes of practice currently represent obstacles to PPI; and that it may be difficult to engage public and patients if they have negative views of the sector.

As a result of the study, the EUPATI project is discussing the potential for a new direction towards PPI in industry-led medicines R&D and has identified examples of patient/industry partnerships in this area.

Suzanne Parsons, Health Researcher at the Public Programmes Team at Central Manchester University Hospitals NHS Foundation Trust (CMFT) and The University of Manchester, said: “We recommend the provision and wide communication of strong case studies to improve awareness of PPI and its benefits among industry professionals. To do this, we need to identify what constitutes good practice, as it is still a relatively new field.

“It would also be useful for industry to revisit codes of practice to ensure they do not serve as barriers against greater PPI activity.”

Key outputs of the project are the EUPATI Patient Expert Training Course and the EUPATI Toolbox for Medicines R&D to be launched later this month. These are for patients who are interested in learning more about the medicines R&D process and can help both patients and industry professionals implement patient involvement in medicines R&D, in order to address some of the aforementioned barriers to PPI identified in this study (i.e. patient education and industry regulatory worries).

“For different reasons, including cultural conservatism and concerns about regulatory barriers, industries have been somewhat reticent to engage directly with patients in clinical development. This approach is changing as we seek to understand and integrate patients’ views, and EUPATI is supporting patients with tools and knowledge for their meaningful involvement. Patients should be a partner in drug development, not just the subjects of studies,” explained Jane Griffiths, EMEA Company Group Chairman, Janssen Europe, Middle East & Africa.

The study was performed as part of EUPATI, a patient-led project, which involves a unique European team of academia, patient advocacy organisations and the pharmaceutical industry.


To speak with Bella Starling (co-lead for the study) or Suzanne Parsons (Health Researcher), please contact:

Emma Smith
0161 701 2679 / 0782 514 2219
This email address is being protected from spambots. You need JavaScript enabled to view it.

Lucy Prosser
0161 701 0260 / 0782 514 2219
This email address is being protected from spambots. You need JavaScript enabled to view it.

To speak with Kay Warner (co-lead for the study), please contact:

GSK Press Office
020 8047 5502


  1. Suzanne Parsons, Bella Starling, Christine Mullan-Jensen, Su-Gwan Tham, Kay Warner, Kim Wever. What do pharmaceutical industry professionals in Europe believe about involving patients and the public in research and development of medicines? A qualitative interview study. BMJ Open 2016. (

Notes to Editor


About EUPATI The European Patients’ Academy is a patient-centered team of 33 organisations, led by the European Patients' Forum, with partners from patient organisations (The European Genetic Alliance, The European Genetic Alliance, the European AIDS Treatment Group and EURORDIS), 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 and/engaged in medicines research and development.

Find out more about the European Patients' Academy, including our ethics and transparency policies, in seven languages, at:

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 do pharmaceutical industry professionals in Europe believe about involving patients and the public in medicines research and development? – A qualitative interview study

  • The study aimed to explore European-based pharmaceutical industry professionals’ beliefs about involving patients and the public in medicines R&D.
  • The researchers conducted one-to-one, semi-structured interviews as part of qualitative studies of key stakeholders in medicines R&D in three European countries.
  • Work was conducted in the UK, Spain and Poland. These countries were selected as they varied on: Date of entry into the European Union; government health expenditure; employment rate. EUPATI is also being established at a local level in these countries, where it will implement and disseminate its materials.
  • Within each country, the perspectives of patient advocates; patients and the public; clinical research professionals; healthcare policy makers and pharmaceutical industry professionals were explored. This paper reports the data from pharmaceutical industry professionals representing 11 companies.

About the CMFT an the University of Manchester

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. (

The Public Programmes Team at CMFT is a not-for-profit NHS-based organisation which provides high-quality public involvement and engagement service, in collaboration with The University of Manchester. The Public Programmes Team aims to involve and engage people from all walks of life in biomedical and health-related research. (

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. The University of Manchester is one of the country’s major research institutions, rated fifth in the UK in terms of ‘research power’ (REF 2014), and has had no fewer than 25 Nobel laureates either work or study there. The University had an annual income of £886 million in 2013/14.