A central activity in MULTI-ACT is the establishment of a group of experts focused on patient engagement: the Patient Engagement Group (PEG).  This PEG has developed guidelines to engage patients in activities throughout the Research & Innovation (R&I) Continuum.

There are many opportunities for patient engagement but so far these have generally focused on medicine lifecycle driven initiatives in which patients have been engaged to improve study design to ensure a trial is acceptable to participants

In order to develop science with patient input MULTI-ACT has identified the sequence of activities in the R&I continuum where patients should be engaged in order to maximize the impact of R&I.

MULTI-ACT has identified 7 steps in the R&I path in which patients can contribute in different forms.

The MULTI-ACT PEG is also developing strategies to mediate, negotiate and build shared perspectives on the development of innovative metrics.

Research outcome measurement is complex, involving different dimensions. This complexity requires to consider the values and the perspectives of different stakeholders, in particular those who can input their immediate and personal insight into research assessment: the patients.

Nowadays reality is that “many PROs were developed with insufficient understanding about what matters to patients and inadequate partnership with patients (as highlighted in the “Patient-Reported Outcomes: Design with the End in Mind” (Milken Institute, Cynthia Grossman, January 2018)

A distinctive characteristic of MULTI-ACT is co-creation. MULTI-ACT has the objective to produce a collective impact framework (CRIF), a methodology to tackle deeply entrenched and complex social problems. Collective Impact is an innovative and structured approach to making collaboration work across government, business, philanthropy, non-profit organizations and citizens to achieve significant and lasting social change. The approach calls for multiple organizations or entities from different sectors to abandon their own agenda in favour of a common agenda, shared measurement and alignment of effort.

In a collective impact framework, the different stakeholders don’t have the goal to see their particular interest reflected in the model but sharing a common vision and agenda.

Unlike collaboration or partnership, Collective Impact initiatives have centralized infrastructure – known as a backbone organization – with dedicated staff whose role is to help participating organizations shift from acting alone to acting in concert.

The CRIF has 5 dimensions: excellence, efficiency, mission and social and the “patient reported dimension” that is considered as a core point of the model.

The central role of patient reported dimension does not signify that patients are more important than other stakeholders but that the whole research process, and the health research impact assessment, has to be done with an active participation of patients.

A key challenge to enable Patient Reported Outcomes (PROs) as key metric to measure impact of research on patients is for MULTI-ACT to help finding a happy medium between PROs that work at population level and PROs that can be individualized for use in care and treatment.

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This blog entry is a direct continuation of the previous blog, “Responsible research & Innovation – reducing the distance between science and society”. Read it here.

On 12 November 2019, MULTI-ACT will host its first project-dedicated event in Brussels, Belgium.

The EU-funded MULTI-ACT project, which began in May 2018, aims to increase the impact of health research on people with brain diseases by creating and implementing a new model allowing for the effective cooperation of all relevant stakeholders.

After one and a half years of work, a number of work packages have completed their work and will have plenty to present on the day. The focus of the event will be the following:

• A new governance criterion 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 path;

• A new tool for the assessment of the research impact across different dimensions including excellence, efficacy, social, economic and patient reported dimension and to better tie the research results to the objectives of the initiative.

The official project video will also debut on the day and a networking lunch will follow immediately after the event.

An agenda & registration page will follow soon. For logistical details, please see below:

Venue:
University Foundation/Fondation Universitaire
Rue d’Egmont 11, 1000 Brussels

Date & Time:
12 November 2019
10:00-14:00 (Registration & welcome coffee begins at 9:30)

Over the last decade, several attempts have been made to try and reduce the distance between science and society. These have led to the definition of a new approach, which has been called Responsible Research and Innovation (RRI).

Responsible Research & Innovation (or RRI) is a cross-cutting approach that aims to make research more inclusive, participatory and ethically responsible. 

RRI seeks to openly raise issues associated with research and innovation in order to anticipate the consequences and involve society in the discussion of how science and technology can help create a society we would want for future generations. (source: https://www.rri-tools.eu/).

RRI implies that societal actors (researchers, citizens, policymakers, business, third sector organisations, etc.) work together during the whole research and innovation process in order to better align both the process and its outcomes with the values, needs and expectations of society. In healthcare research particularly, this means to put the expectations of patients and society at the heart of research programs.

Below are the key themes of RRI:

source: https://www.rri-tools.eu/it

MULTI-ACT responds to the following RRI key themes:

How will MULTI-ACT achieve it? 

Rome, Italy – 27 May 2019

Over the next two days (27-28 May 2019), the MULTI-ACT Project will hold its 3rd Consortium Meeting in Rome, Italy. Since its launch in May 2018, the ambitious project and its 11 partners have been working to create and implement a new model allowing for the effective cooperation of all relevant stakeholders to increase the impact of health research on people with brain diseases. The expected projects outcomes, in line with the EU’s Responsible Research Innovation (RRI) – Horizon 2020 programme, are:

Marking just over a year since the project has launched, this month a number of Work Packages are concluding work and presenting their results today. Below are the summaries of the work to come out of Work Packages 1, 3 and 5:

Innovative guidelines for effective patient engagement across the health research and innovation path (WP1)

A dedicated group of experts has been established in the patient engagement group to guide WP1 activities and identify R&I processes where patient engagement is instrumental to reach impact. A landscape analysis of existing patient engagement experiences in R&I, focused on Multiple Sclerosis (MS) and brain disorders, has been performed to identify areas of unmet needs and come up with a prioritization of intervention. The landscape analysis was developed with different methodological steps: literature review, web research, interviews, surveys and outreach to other relevant Responsible Research & Innovation (RRI) initiatives.

Although the landscape analysis has identified the great potential of patient engagement in clinical and healthcare research projects, which are mainly medicine lifecycle driven, there is still limited evidence of the impact and value of engagement (return on engagement) and a lack of standardized procedures, particularly in the areas of brain-related research. Moreover, in the identified experiences, patients have been involved and consulted for feedback rather than engaged through decision-making and co-design roles from the very beginning of the research.

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 R&I programs (i.e. MULTI-ACT Patient Engagement guidelines). Empowering the experiential knowledge of patients, as co-researcher and key stakeholders, is the root of the MULTI-ACT patient engagement strategy and related guidelines.

A new tool for the assessment of the research impact across different dimensions including excellence, efficacy, social, economic and patient reported dimension and to better tie the research results to the objectives of the initiative (WP3)

WP3 has developed a Master Scorecard of indicators that applies a multi-stakeholder perspective to assess the impact of health research in the field of brain diseases, using MS research as a case study. The Master scorecard consists of five dimensions of accountability. In line with RRI guidelines, the mission dimension focuses principally on better aligning research and innovation (R&I) and its outcomes with the values, needs and expectations of patients and society. The excellence dimension considers the quality of research. The social dimension refers to the long-term impacts of MS research for the whole society, engaging different types of the stakeholders. The economic dimension considers the long-term economic sustainability and the financial resources needed for the pursuing the given mission. Finally, the patient-reported dimension works as a core element guiding the research impact assessment on domains that matter most to patients and acts as an overarching dimension in which the other four dimensions should be rooted.

The first release of the Master Scorecard considers and includes four dimensions (social, mission, efficiency and excellence) and for each dimension it proposes a set of 115 indicators presented according to different aspects (45) to be measured.

The Master Scorecard has been developed through a process that involves a comprehensive review of the literature and the relevant initiatives, as well as stakeholder interviews in participatory and reflective way. By its nature, the Master Scorecard is dynamic, allowing for flexibility and adaptation. It has to be general/universal for customizing purposes: it can be applied to different multi-stakeholder research initiatives and indicators’ relevance depending on the needs and mission of each user.

A new governance criterion allowing effective cooperation of all relevant stakeholders in multi-stakeholder research initiatives and transformative governance (WP5)

Through a co-design process carried out with MULTI-ACT partners, Work Package 5 has developed the MULTI-ACT Governance Model for the implementation of multi-stakeholder engagement and collaborative initiatives in brain disease research. The Model is structured according to 5 main criteria and 19 sub-criteria, which focus on the definition of a shared agenda, the structuring of a participative governance model, the development of a methodology to engage stakeholders, the efficient management of the initiative and the assessment of its results.

The Model contains detailed recommendation to guide the user in the application of criteria and sub-criteria; furthermore, when possible, it also offers practical solutions for implementation, considering best practices emerging from a long list of multi-stakeholder initiatives, applicable to the purposes of MULTI-ACT. Thanks to a balanced mix of principles and hands-on solutions, the Model constitutes an innovative approach to organize participative multi-stakeholder governance structure of health research and performing organizations, considering the relevance of the engagement of stakeholders, in particular patients, both in the definition of the research agenda and in the assessment of research outcomes.

In the upcoming steps of the projects, in particular within WP4, the Model will be tested in an existing Multiple Sclerosis (MS) multi-stakeholder research initiative and further refined.

Improving and strengthening policy with the MULTI-ACT solution

Lastly, as we mark the end of the European Union election cycle, with voting coming to a close yesterday, MULTI-ACT today launches its Policy Brief for the incoming members of the European Parliament and other policy institutions, hoping to draw attention and awareness to the realities of the 179 million Europeans living with brain conditions and how RRI projects like MULTI-ACT are working to help meet the challenge. The Policy Brief will be printed and distributed to all incoming MEPs and is available online for sharing. Find it here.

Collective governance and transformational governance are instrumental to produce responsible research innovations.

An important way in which collective and transformational governance is manifested is through so-called multi-stakeholder initiatives. Multi-stakeholder initiatives bring together government, civil society, and the private sector to become mutually responsive to each other to address complex development challenges that impact people and society as a whole. In doing so, multi-stakeholder initiatives come to complement the role of each stakeholder: acting like an organization but thinking like a movement.

So far, most multi-stakeholder initiatives have faced challenges in achieving the desired transformational and enduring impact. Much more is required. To secure future successes, multi-stakeholder initiatives will have to be further sustained by fostering a collective-impact approach where each party also has its return of investment aligned with a shared mission. Given their complexity, it is clear that none of the needed actions will be achieved without investing in the identification and development of new models of collaborative and sustainable research governance.

The EU-funded MULTI-ACT project (see: http://go.nature.com/2mdkqgt) aims to increase the impact of health research on people with brain diseases. It will create and implement a new model to engage stakeholders in defining metrics for a given mission and agenda. MULTI-ACT integrates metrics related to excellence with new measures relating to economic and financial efficiency and to social efficacy. MULTI-ACT foresees patients as a key stakeholder in the Responsible Research Innovation process. MULTI-ACT will focus on the brain diseases research agenda and will use Multiple Sclerosis (MS) as its first case study.

The project started on 1 May 2018 and will continue for three years. It has received funding from the European Union’s Horizon 2020 Research and Innovation Programme under the Grant Agreement No. 787570

By: Dr. Paola Zaratin, MULTI-ACT Project Coordinator & Director of Scientific Research, Italian MS Society – Italian MS Foundation