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Involving patients in EU-funded projects: benefits and best practices

20th October 2023 at 11:22 am

Close collaboration with stakeholders has established itself as a key practice in research and innovation. For good reason: it increases relevance, credibility, as well as practicality of outcomes and ultimately leads to more effective and sustainable solutions. This principle holds true also in health projects. Here, it is patients and their caregivers who play a crucial role as stakeholders. In recent years, the European Commission has actively been promoting the participation of patient groups and associations in EU-funded health projects, recognising public and patient involvement as an important factor for achieving truly patient-centered outcomes and results. In this article, we will explore the benefits of involving patients in EU-funded projects, examine best practices for effective involvement, and share insights and learnings from our projects.

The evolution of patient involvement in research

The involvement of patients in health research has gained first public attention in the mid-1990s, as described by Iain Chalmers in his article “What do I want from health research and researchers when I am a patient? During this time, European organisations like the European Medicines Agency (EMA) were just beginning to recognise the importance of involving patients in healthcare. This began to change with the active lobbying of patients for new study approaches and advocating about side effects of pharmacological interventions for HIV in the late 1990s. Since then, the concept of patient and public involvement (PPI), e.g. research carried out with or by patients rather than to, about, or for them, has become an increasingly popular and respected approach in healthcare research. Over the past years, the European Commission too has been promoting close collaboration with patient groups, sometimes even incorporating such collaboration into the requirements for new research proposals. But what are the benefits of patient involvement in EU-funded projects?

The benefits of patient involvement in EU-funded projects

Involving patients and patient representatives (such as national and pan-national patient associations and organisations) in your (health)-research and innovation can be highly beneficial to your project and your project’s results.  At its core, patient involvement ensures that your research and innovation remain patient-centered, aiming to address the actual needs and demands of those directly affected. Patients can offer first-hand experience of living with a certain condition or health issue, and thus are uniquely positioned to provide input on relevance, acceptability, usability and risks. When done correctly, patient involvement can lead to solutions that are not only more effective but also more sustainable. This, in turn, is likely to lead to better and more informed policymaking decisions.

Moreover, involving patients in your projects can increase credibility of your research methods and results.  Credibility is a key factor for facilitating the successful uptake of your project results and solutions, and implementing thorough patient-centred research will improve acceptance among fellow patients, healthcare professionals and other affected stakeholders.

This increased acceptance and credibility is also beneficial for the effective communication and dissemination of project results: patients involved in your research project can provide valuable insights on how to reach your defined stakeholder groups through appropriate tools and channels, and relevant and credible information. This is why involving patients in your projects outreach strategy is a central tool to maximising the impact of your research results and innovations. Crafting patient-friendly messages in patient-friendly language as well as implementing relevant and accessible communication and dissemination activities will help to bridge the gap between technical research and patient understanding –  making your research relevant to the people it aims to serve. In the following paragraph, we will share learnings and best practices based on experience in our projects.

Effective patient involvement: insights and best practices from our projects

First things first: successful patient involvement should never merely be a checkbox, but a well-thought-out strategy that is carried out from proposal stage to the end (and beyond) your project’s lifecycle. This means that patients or patient representatives should be involved early in your project plans: getting patient organisations on board already at a proposal stage will ensure that your research plans follow a thorough patient-centred approach with active participation throughout all work packages and the entire lifecycle of your project. For example, when planning clinical studies, patients can provide input on practical aspects, such as scope and expectations per study visit, or strategic advice on the recruitment of participants (Supple, D., Roberts, A., Hudson, V. et al. From tokenism to meaningful engagement: best practices in patient involvement in an EU project. Res Involv Engagem 1, 5 (2015). https://doi.org/10.1186/s40900-015-0004-9).

AI-Mind, one of our Horizon 2020 projects dedicated to developing AI-based tools to predict the risk of developing dementia of people with Mild Cognitive Impairment, leverages the joint skills, tools and know-how of project partners across Europe, including patient organisation Alzheimer Europe and several research institutions to recruit 1,000 participants for a central research study. An important element of this is breaking down attitudinal and technical barriers by communicating relevant information targeted at patients in four local languages – an approach that the European Patient Forum deems key to breaking down barriers in effective patent involvement. This has been achieved by tailoring the content of the project website, creating study explanatory videos, flyers and other content materials in local languages.

XoSoft, one of our finalised Horizon 2020 projects focused on the development of a soft biometic exoskeleton to assist people with mobility impairments. The project had work packages dedicated to user requirements and user centred design to ensure the developed exoskeleton suited the needs, expectations and requirements of their end-users — people with muscle weaknesses, elderly person, individuals with mobility impairment and patients with stroke. Workshops and surveys were organised with and for end-users and the feedback and valuable information collected helped significantly the system development at successive stages in the project.

GENEGUT, one of our ongoing Horizon Europe research and innovation actions, is set out to develop a new oral RNA-based therapy for ileal Crohn’s Disease. The involvement of EFCCA, the European Federation of Crohns and Ulcerative Colitis  Associations, is central to firstly, ensuring that patients’ needs and perspectives are translated into the new therapeutic (e.g. through providing input on patient-friendly drug administration, risks and expectations) as well as, secondly, informing about the project externally while facilitating an open, continuous and cooperative exchange with patients.

In essence, involving patients in EU-funded healthcare and innovation projects not only aligns with the principles of stakeholder collaboration and engagement but, when done correctly, also leads to outcomes that are genuinely patient-centric, practical, and effective in potentially shaping the future of healthcare in Europe.

Our commitment to fostering patient involvement

Building on our track record with more than 30 EU funded health-related projects, we at accelopment are fully committed to continue supporting European research and innovation projects and fostering patient involvement in Horizon Europe and beyond. Are you interested in exploring upcoming opportunities for health projects? Please contact our experts below.

Joanna Plesniak
Project Manager Communications

Jamuna Siehler
Project Manager Communications