Support for patients to get involved in discussions about research

Posted on April 23, 2012 by


Last week I found out about a really interesting new project launched in Europe to support patients to get involved in discussions about how we do research. Called the European Patients’ Academy of Therapeutic Innovation or EUPATI for short, it’s a five-year project. They kicked off this April with an information-gathering phase – trying to find out what resources are already out there to give patients and the public a beginners guide to research.

Over the next five years they plan to develop a library of resources available for everyone to use, run some summer schools for patients wanting to get up-to-speed about research and involved in discussions about it, and help develop ways that patients can get more involved to enable researchers and authorities to improve the way they do research.


Patients have a lot to say and a unique perspective that needs to be heard when deciding how new drugs are developed. They have views on how research is conducted, how new drugs are trialed, how decisions are made about the risks and benefits of new treatments and new drugs are approved and licensed for patients to use them.

But often it is hard to get involved in these discussions because all of this requires a lot of assumed knowledge. You need to understand the basics of  how a drug is developed, how it is trialed on smaller groups of people before it can be approved and rolled out to all patients etc. before you can start discussing the ins and outs.

Lots of organisations develop material to unravel how research is conducted, particularly UK medical research charities whose supporters want to know about the research their donations fund and understand the steps in developing new treatments. But not all patients may know that this information is out there, or even consider getting involved in decisions about research and the development of new medicines.

The project

This project is funded by the Innovative Medicines Initiative (IMI) whose aim is to speed up the development of better and safer medicines for patients. IMI is a European initiative which is co-funded by the European Commission and EFPIA, the european pharmaceutical umbrella body, and they are jointly funding the five-year EUPATI project as part of this.

For starters, the project is finding out what information is already out there. They don’t want to reinvent the wheel so are asking organisations across Europe that have developed material explaining how research works to share it with them. More on what they are looking for and how to share it with them here.

They are looking for any information explaining the process of medicine development from lab bench to patient, but identify six specific themes:

  1. Medicines development process from research to approval (examples include drug discovery, translational medicine, biopharmaceutical research, clinical research, clinical trials phases 1-4, regulatory processes)
  2. Personalized and predictive medicine (examples include stratified medicine, individualised medicine, pharmacogenetics, pharmacogenomics, advanced therapies)
  3. Drug safety and risk/benefit assessment of (novel and existing) medicines (examples include pharmacovigilance, patient reported outcomes (PROs), side effects, adverse drug reactions, effectiveness, efficacy)
  4. Pharmacoeconomics, health economics and health technology assessment (examples include outcomes research, health technology development, health economics)
  5. Design and objectives of clinical trials (& roles of stakeholders) (examples include clinical trials phases 1-4, treatment trials, prevention trials, screening trials)
  6. Patients’ roles and responsibilities in innovative medicines development (examples include patient engagement, rights and safety, health literacy)

This information gathering will help them develop a network of individuals and organisations across the EU who speak to patients about research.

They are then going to review the information and identify where there are gaps. Where do we need to get more information out there to explain what is going on.

Once they have identified the gaps, they plan to use the existing material they have gathered and develop new material to create a library of documents to support patients and the public to find out more about research. These will be available for everyone to use and adapt from a wiki-type library. They will be translated into 6 EU languages. They also plan to run a summer school training course for patients who want to become experts in research issues and get more involved as ‘patient advocates’ in discussions about research.

This is only a five year project but the aim is for its impact – ensuring patients are part of discussions about research – to last. So a big part of EUPATI’s work will be engaging with patient organisations, charities, academic, industry, regulatory agencies etc to ensure that patients are involved throughout the development of new treatments.

They have advisory committees to guide their work as it goes forward

Is this interesting for UK medical research?

The number one reason people choose to give money to charity in the UK is for medical research. The UK’s strong medical research charity sector is relatively unique across Europe and many of these have patient groups allied to them. UK charities are used to speaking about research with their supporters, meaning that we have a lot of experience and expertise to offer this project. And we have links with lots of patients who are already engaged and can tell us what information and support they and others like them need.

The project also aims to explore the extent to which patients can and should play a role in the development of innovative medicines development. Involvement of patients and the public is embedded in how we regulate health research, e.g. effective patient and public involvement is one of the priorities for the new Health Research Authority. With this experience, we have a lot of experience and insights to contribute to this discussion.

What next?

EUPATI wants to hear from you about the information you have developed to explain research.

Posted in: Policy