I have been working on a book about consortium projects for a little more than a year.
Writing a book like this is about more than just writing. It is about consolidating your thoughts and distilling your experience. In the course of this process have settled on a set of 5 principles for developing and implementing highly interactive consortia:
1) Engage stakeholders
2) Fulfil both partner needs and project ambitions
3) Leverage multidisciplinary thinking
4) Work in iterative cycles
5) Foster opportunities to do more
Recently the European Respiratory Society's (ERS) Severe Heterogeneous Asthma Research collaboration Patient-Centred (SHARP) consortium published its first research manuscript reporting on data derived from the integration of 11 different severe asthma registries across Europe. The conclusion was that the "severe asthmatic population in Europe is heterogeneous and differs in both clinical characteristics and treatment". Most impressive was that existing guidelines are not always followed and that the characteristics of the patients when the started a new medicine were different compared to the inclusion criteria of the clinical trials for the medication they had been started on.
I have been working with the SHARP consortium since its inception. So, I thought it would be interesting to analyse the process SHARP followed to illustrate the 5 principles.
Principle #1: Engage Stakeholders
Paradigm shifts in the practice of medicine only happen when multiple different types of stakeholders accept them. Engaging stakeholders early and meaningfully increases the likelihood that a project will have a substantial impact.
The governance of SHARP is structured around 4 stakeholder groups, patients, national registry leads, scientists, and pharma.
Each group met separately to define their top priorities. Then small mixed stakeholder met to develop a list of priorities that blended the different stakeholder group priorities into a set of research topics. These topics were then formed into a set of projects designed to deliver on the priorities.
This process illustrates an irony. The best way to engage stakeholders is first to separate them. What you want is the stakeholder perspective, and that is better achieved when a group of like-minded people can first think together.
Principle #2: Fulfil both partner needs and project ambitions
You have your own personal or organisational needs. If you are part of an ambitious consortium project, you also want to make a real difference.
A project designed in such a way that it fulfils the personal or organisational needs as well as the broader project ambition the contribution and enthusiasm of consortium partners increases.
For SHARP the ambition is to achieve a broad integration of severe asthma registries across Europe that will enable research at scale and promote the harmonisation of severe asthma clinical management.
As a PhD student, the lead author benefited greatly from being able to work on a manuscript that was not only novel, but that also helped him develop skills beyond just data analysis and writing.
As a whole, the SHARP consortium benefited because the analysis and the manuscript prove that there are valuable insights to be gain by analysing multiple registries across Europe. It also shows that the ambitions of SHARP are feasible.
Principle #3: Leverage multidisciplinary thinking
Implementing a complex and ambitious project is challenging. One of the advantages of having a lot of interaction in a consortium is that you can use that interaction to tap into diverse experience and expertise to solve problems.
The concept, development, and interpretation of the results for this first research manuscript involved the input of multiple disciplines including patient experts, clinicians, researchers, data scientists, industry experts, statisticians, epidemiologists, and a project manager.
During the analysis and writing of the paper, there was a robust dialogue that centred around what type of questions needed to be answered. Most importantly, there was lots of patient stakeholder input.
None of this could have happened without the coordination of this interaction. This was done superbly by a project manager from the ERS.
Principle #4: Work in iterative cycles
Science is iterative. The power of science is being able to capitalise on the unexpected finding. A consortium project is no different.
When we designed the plan for SHARP, an essential element was the conduct of a fast-moving project.
This fast-moving project was a simple implementation of the broader ambition to integrate severe asthma registries across Europe. There was some scepticism that it would not provide any interesting insights, which proved to be wrong. More importantly, it illustrates what is possible.
When you work in iterative cycles, you are drawing upon the elegance of simplicity to build understanding that will allow you to achieve complex goals.
Principle #5: Foster opportunities to do more
When you have an ongoing dialogue about a project, and you work iteratively new ideas for additional research, for new collaborations, and for additional funding arise all the time.
Identify and then developing these opportunities is how you can end up achieving much more than you ever expected to.
In SHARP, the success of the fast-moving project is stimulating ideas for new projects and new collaborations. Just demonstrating that there is a functioning network that can achieve a joined-up analysis opens up multiple possibilities.
The reality is that if SHARP is going to achieve the impact it has set out to accomplish, it will take more than one project. It will require a whole ecosystem of effort aligned around common objectives and built on a willingness to collaborate.
The value of interaction
By mapping the culture and operational processes in SHARP against the 5 principles, it is easier to appreciate the benefits that a high level of interaction brings to a consortium project.
Are there other principles you would include?
I am now in the depth of a substantial revision of the book. I welcome any insights or thoughts you might have.
If you want an advanced copy of the book, let me know in the comments.