Developing the science of patient input: the MULTI-ACT project

The number of people with brain diseases is on a steep rise, due to a number of factors including the aging population. The WHO estimates that brain disorders account for one-third of the burden of all diseases in Europe. Around 179 million Europeans live with brain disorders at a cost of over €800 billion.^1,2

MULTI-ACT: A multi-stakeholder approach

The goal of the MULTI-ACT project is to increase the impact of health research on people with brain disorders.

Launched in May 2018, the MULTI-ACT project will work with patients and patient organizations, academics, private and public stakeholders to create and implement a new model allowing for effective cooperation of all relevant stakeholders.³ This will be applicable in defining the scope of health research as well as new metrics for the evaluation of its results.

It is of utmost importance to develop a research model that produces results that have a real impact on the lives of affected patients and their caregivers.

The expected outcomes of the MULTI-ACT project are in line with the EU’s Responsible Research Innovation (RRI) Horizon 2020 program, and include:

• New governance criteria allowing effective cooperation of all relevant stakeholders in multi-stakeholder research initiatives and transformative governance
• Innovative guidelines for effective patient engagement across the health research and innovation pathway
• A new tool for the assessment of the research impact across different dimensions including: scientific excellence, efficacy, social, economic and patient-reported outcomes
• A digital toolkit that integrates the MULTI-ACT model and tools and that is designed to support multi-stakeholder research initiatives.

Responsible research and innovation

RRI is an approach that anticipates and assesses potential implications and societal expectations regarding research and innovation, with the aim of fostering the design of inclusive and sustainable research and innovation. RRI requires that societal actors (researchers, citizens, policy makers, business) work together during the whole research and innovation process to better align both the process and the outcomes with the values, needs and expectations of society.

Engaging patients in scientific research

The MULTI-ACT project will provide guidance on how to maximize science with patient input and evaluate the science of patient input and the impact of RRI that matters to patients.

• Science with patient input occurs when patients meaningfully and actively collaborate in the governance, priority setting of research, as well as in summarizing, sharing and applying the results.
• Science of patient input occurs when data of people with a disease are used (active and passive contribution) to evaluate the impact of RRI.

To date, the MULTI-ACT project is in the first phase of knowledge building through literature analysis, consultation, design of a governance model, patient engagement and impact assessment. Current best experiences of patient involvement in clinical and healthcare research will be used as a basis for developing innovative solutions to engage patients in the governance of wider RRI programs.

Empowering the knowledge of patients - as co-researchers and key stakeholders - is at the root of the MULTI-ACT patient engagement strategy.

The project will run for 3 years, and future phases will include real-life implementation, testing the MULTI-ACT framework in a multiple sclerosis case-study, refinement and roll-out of the framework through a digital toolbox and related manuals.