Skip to main content

Crossing the bridge – from project to non-profit

Transitioning from an IMI or IHI project to a non-profit association is one way to ensure the sustainability of project results. PharmaLedger and conect4children shared their experiences as they navigate this process.

28 May 2024
Crossing the bridge from project to non-profit. Image by Orla via Shutterstock.
Crossing the bridge from project to non-profit. Image by Orla via Shutterstock.

When writing a proposal for an IMI or IHI project, a key question looms large – how will the results of the project continue to be useful for the research community? How will the legacy of the project live on?

Marjolein Willemen of Novartis, who is involved in the IMI Conception project, says that thinking outside the box is needed when it comes to tackling sustainability. “It needs a totally different mindset. We are all very good at doing the tasks of the project but the sustainability part needs more entrepreneurial skills.”

Setting up a non-profit association is one route that projects can take. These associations can provide a concrete framework through which the public and private sector can continue to work together to deliver results.

Paradigm shifts and safe spaces

The PharmaLedger project, which closed in 2022, saw a non-profit association as the perfect fit. PharmaLedger developed blockchain solutions for several problems that affect the entire pharmaceutical industry, such as providing a safe basis for the digitisation of medical information leaflets, fighting counterfeit medicines and ensuring transparency throughout the supply chain.

“The problems we as an industry are facing cannot be solved by one company. It was a paradigm shift in thinking,” says Daniel Fritz, the new executive director of the non-profit PharmaLedger Association. “We need joint and combined efforts to make a difference. The model of collaborative work which we developed and tested with the PharmaLedger project forms the basis for how we operate now at the association.”

Another IMI project-turned-non-profit is the conect4children Stichting, which will provide pharmaceutical companies with paid-for expert services in conducting clinical trials for children. The conect4children (c4c) project developed a pan-European network of more than 400 paediatric experts that now have contracts with the new association and can be called upon to provide advice. In addition, the new conect4children Stichting will offer support to companies in terms of finding suitable sites for running clinical trials – the association counts 250 trial sites within their network. 

Mark Turner, scientific coordinator of the c4c project and CEO of the conect4children Stichting, says that the IMI project was a perfect “incubator” for taking the first steps towards developing a self-sustaining non-profit.

“The public private partnership gave us a privileged safe space to work, we could test things out in a slightly more protected environment,” he says.

The early bird catches the worm

In the eyes of Maria Eugenia Beltran, who coordinated the PharmaLedger project on the academic side from Universidad Politécnica de Madrid, one of the key ingredients for success is to start thinking about sustainability early on. “Before we started the project, we worked with industry to build a roadmap of what the outcomes of the project would be,” she says.

Mark Turner agrees. “Setting up a non-profit was part of the plan from the beginning,” he says. The c4c project lasted six years, and the work on the non-profit began in earnest in the second year.

“The key was anticipation and considering it as a serious endeavour from very early on. The industry partners suggested a very structured approach which gave us time – because everything takes longer than you expect!”

Trimming back to conquer more

One of the big take-aways for conect4children was that not every great idea is profitable, and that from the early stages a project should be conscious that pruning needs to take place.

“There are several services that we’re not taking forwards initially. That natural selection needs to take place early on because there are lots of good ideas but very few of them generate sufficient revenue,” he says. “They’re nice to have, but not mission-critical for revenue generation, so we’ve put them on hold.”

Similarly, the PharmaLedger project had to make decisions about which of their many potential applications to tackle first.

“When we finished the project, all of our use cases had a prototype – a minimum viable product. We then divided our use cases, from those that had more potential and maturity to those with less, and we chose one to be the flagship use case which was electronic product information,” says Maria Eugenia.

SMEs light the path ahead

Turner stresses the value of the different partners with various backgrounds was essential for the successful establishment of the Stichting. “For instance, there were people involved who were working in SMEs but had crossed over to academia. They had one foot in each camp so they gave us a lot of insight,” he says.

“SMEs play an important role when it comes to sustainability – they explained to us how the results could potentially be adopted,” says Maria Eugenia. “The SMEs are often the ones with the highest potential to take your results closer to the industry.”

It’s still early days for these associations, but long-term planning and forward thinking has led to the successful establishment of both. We wish them the best of luck!

PharmaLedger and conect4children are supported by the Innovative Medicines Initiative, a partnership between the European Union and the European pharmaceutical industry.