Links and resources

Discover the EUPATI Toolkit of PPIE Resources to up-skill, build confidence, save time and gain useful knowledge of medicines research and development

Suitable for all levels of involvement and competency

Hands on Training Workshops

What is EUPATI: The European Patients’ Academy (EUPATI) is a pan-European project implemented as a public-private partnership by a collaborative multi-stakeholder consortium from the pharmaceutical industry, academia, not-for-profit and patient organisations. The Academy was started, developed and implemented as a flagship project of the Innovative Medicines Initiative (http://www.imi.europa.eu/), and continues to be led by the European Patients’ Forum. EUPATI focuses on education and training to increase the capacity and capability of patients to understand and contribute to medicines research and development and also improve the availability of objective, reliable, patient-friendly information for the public.

What is the EUPATI Toolbox : Just like a real toolbox that any carpenter or electrician uses, the EUPATI Toolbox contains all the ‘tools’ you might need around medicines research and development. Quite possibly you won’t need all of it, and you can certainly specialise in any part of it, but any question you have regarding medicines research and development should be able to be answered here.

In our case, the Toolbox is not medicine- or disease-specific, but having said that, the information here should be applicable to the majority of diseases and/or medicines you may be concerned with. Besides the 12 categories of development, there are also more interactive areas of how you can group and use the information you need in the Discover!, Adapt!, and Share! areas. As EUPATI is a pan-European project and the material is available in seven languages: English, French, German, Spanish, Polish, Russian, and Italian. For more information click here.

How can this training event benefit me?: Through this training we aim to provide you with a hands on demo of the EUPATI toolbox so that you are familiar with the range of high quality information available and how you can access this valuable resource readily and with confidence find what you need.

We hope that it will help support an increase in the capacity of members of the public, patients and patient advocates to be effective PPIE advisors, providing meaningful involvement in areas like drug discovery and non-clinical testing, planning and conduct of clinical trials, regulatory affairs, assessment of safety of medicines, benefit-risk assessment, as well as principles of Health Technology Assessment (HTA). See more info here:

https://www.eupati.eu/

http://www.eu-patient.eu/News/News/the-eupati-toolbox-on-medicines-research-and-development-will-go-live-on-27-january-2016/

What do I need to do if I would like to find out more and attend?

https://uk.eupati.eu/event/a-new-event/

Laura McCulloch Laura.McCulloch@alliance-scotland.org.uk Tel: 0141 404 0233 




INVOLVE was established in 1996 and is part of, and funded by, the National Institute for Health Research, to support active public involvement in NHS, public health and social care research. It is one of the few government funded programmes of its kind in the world.

As a national advisory group our role is to bring together expertise, insight and experience in the field of public involvement in research, with the aim of advancing it as an essential part of the process by which research is identified, prioritised, designed, conducted and disseminated.


INVOLVE defines public involvement in research as research being carried out ‘with’or ‘by’ members of the public rather than ‘to’,‘about’ or ‘for’ them. This includes, for example:
  • working with research funders to prioritise research;
  • offering advice as members of a project steering group;
  • commenting on and developing research materials;
  • undertaking interviews with research participants.
When using the term ‘public’ we include:
  • patients;
  • potential patients;
  • carers and
  • people who use health and social care services as well as people from organisations that represent people who use services.
Visit their website here http://www.invo.org.uk/

Going the Extra Mile a strategic review of public involvement in the National Institute for Health Research

A strategic review of public involvement in the National Institute for Health Research (NIHR), Going the extra mile, is published.

The review of public involvement in the NIHR, commissioned by the Director General Research and Development/Chief Medical Officer in March 2014, provided an opportunity for an independent review panel to assess how far the NIHR has been successful in achieving public involvement across its activities to date and to recommend a direction for the NIHR for the future that builds on these achievements.

Patients, carers, researchers and international, third sector and industry representatives contributed to the review by  submitting documents, audio and video evidence, completing questionnaires and online surveys, and through taking part in workshops, meetings and social media, all of which informed the final report and recommendations.

Simon Denegri, the National Director for Patients and the Public in Research​ and Chair of INVOLVE, who led the review said:

'Every day patients and the public go the extra mile to help make UK research happen.  They help decide research priorities, shape its design and spread the word about its importance to fellow citizens.  The public have already made a huge difference to NHS research and the work of the NIHR. We must match their commitment with an equal resolve to involve voices from all parts of the community in all that we do'.

Going the Extra Mile Report - March 2015