Lygature LIVE 2023: There’s no one-size-fits-all solution for being inclusive

Welcome and introduction
Jorg Janssen (Managing Director Lygature) opened Lygature LIVE by welcoming the audience and providing an update on Lygature’s strategy and expertise, illustrated by examples of projects, before giving the floor to moderator Jon de Vlieger (Strategy Director Lygature).

Jon highlighted how Lygature LIVE is a continuation of Lygature’s tradition of bringing stakeholders together and how the topic ‘All Inclusive Innovation’ is connected to the main takeaway from last year’s edition: we are faced with a “clash of challenges” within health innovation. This clash can only be addressed if we understand each other’s individual challenges through inclusive dialogue and continued collaboration.

‘We need global alignment at all levels, from regulators to policymakers and funders, as well as all other relevant stakeholders in the field’

After introducing the topic of Lygature LIVE, Jon announced the three speakers of the afternoon: Helga Gardarsdottir (UU), Remco de Vrueh (Lygature) and Lindy van Vliet (formerly KIT).

Helga Gardarsdottir - All-inclusive trials
Helga shared her experiences from the Trials@Home project, which is a large Public Private Partnership with 31 partners, including Lygature, and part of the European Innovative Medicines Initiative. She focused on the steps taken to create a more inclusive approach to setting up clinical trials in a decentralised way.

Helga elaborated on the way patients are involved in all steps of the Trials@Home project, to explain their preferences, test approaches, discuss ethical aspects, and others. They also provide input on the production of educational materials, on what it means to be involved in clinical trials and for companies, and how to involve patients in trials.

‘You have to think about everyone’s specific role at the table and contribution, and acknowledge them. Only then can you truly move forward together.’ 

She highlighted the importance of involving patients as early as possible: “We think such decentralised trials are beneficial for patients, but they should be involved as early as possible in the designing phase of the trials”.

Remco de Vrueh - Engaging with partners in the Global South
As the second speaker, Remco presented the story of the set up and success of the Pediatric Praziquantel (PP) consortium.  This story is all about resilience, endurance, serendipity, lots of people trying to make a difference, and most of all – trust.  

Schistosomiasis results in long-term consequences for children such as anaemia, cognitive impairment, malnutrition and stunting. The PP consortium works with partners in the Global South to develop a new pediatric praziquantel tablet suitable for young children.

Remco emphasized the need for collaboration between various experts to help avoid pitfalls in R&D programs for Neglected Tropical Diseases by closing the gap between science, technology, and the target community. This is a two-way street where all involved can and need to learn a lot from each other.

‘You need to work closely with local partners and align with their approach, but also respect and understand the local reality to adapt your method to the possibilities available on site.’

Lindy van Vliet - Beyond innovation projects and programs
As the final speaker, Lindy explained how health interventions need to be tailored to the context of a specific health system to reach their full potential.

‘To achieve equity in global health, it is paramount to look beyond your own context and understand the different conditions in different contexts.’ 

Lindy stressed that if you want to intervene in a health system and want to become an advocate to promote health equity, it is important to know exactly what you want to change, why it is necessary, and how you are involved. Knowing the dynamics of power and stakeholders is important for any meaningful change. Your strategy should be based on a stakeholder and power analysis to be effective in influencing the system.

Wrap-up / panel discussion
After the presentations, the audience and panellists engaged in a lively discussion, in which several questions and insights around the theme of the day were addressed. Jon then wrapped up the meeting by collecting take-home messages from the panellists, and sharing his own thoughts about highlights of the meeting. Key take-home messages were:

• Stakeholder mapping is important: before you start you need to address why you make the choices that you make (external influences, different countries). In coalition building and partnerships, you really need to take care of this. 
• Inclusiveness and transparency in partnerships is also about meaningful participation; you have to set clear parameters; sometimes you don’t need everyone at the table initially. It is key to set the parameters in such a way that you address differences. It’s also important to understand the bias some innovations inherently have, e.g. high tech solutions will not always work for people who aren’t tech savvy.
• Sometimes specific groups, usually those with less power, are never involved. We need a more proactive approach to get those people at the table. We need to assess beforehand for whom we need to make an extra effort to reach them. 

The main conclusion of Lygature LIVE this year was that the key to meaningful inclusion is to put the right people in the right spot at the right time, and build a team out of your stakeholders. In the words of the speakers: ‘There is no one-size-fits-all solution for being inclusive.’ ‘Needs and expertise’s change during a project, and that’s fine’.

The lively discussion continued throughout the walking dinner that concluded Lygature LIVE. We would like to thank the speakers and participants for their contributions and are looking forward to welcoming you at future Lygature events!

All photos by Thijs Rooimans