It’s really exciting to be part of the HARMONY project. We are now into almost one year of the project and of course in the beginning such a consortium project needs time to settle, to get everyone at the table, get everyone on the same page and I think there has been great progress on that. All the work packages actually started their work and I’m really glad to see that the patient community is involved in that, not only through the stakeholder forum but also through discussions that we have in Work Package 8 about data protection, anonymization and things like that; in Work Package 2 about the outcomes of the project and of the pilot projects and the outcome parameters and so on. So I feel we’ve come to a very productive level in the project and that’s really great.
What challenges faced by patients will be addressed by the Harmony project?
We need to learn much faster, much quicker, about what the outcomes are of different therapies and of interventions that we see in the seven haematological areas that this project addresses. We’re learning not quickly enough how we should actually treat patients, what the prognostic factors are and what we need to know to treat patients at the best level. That’s what HARMONY is about; big data is a big buzzword at the moment and we don’t know what it’s going to deliver in a couple of years. We all count on that we will actually leapfrog some of the things that we would have learned in thousands of clinical trials with very small populations and so on. So big data is a big topic for us and I hope we learn much quicker than we did in the past.
Why is it important that patients are represented in the project?
It’s very important to have patients in such a project because healthcare seems to be the last industry where you put the customer last. In the beginning everybody thinks what the customer wants but without asking the customer in the beginning. That’s why it’s essential to have patients in the beginning. Look at the project at the moment – we’re discussing about outcome parameters, how can you discuss about outcomes without knowing what patients really want? Because we’re discussing about all the gold standard overall survival and progression free survival and these kinds of hard endpoints but in the end what counts is can people live with the disease, can they live with the treatment? Not only can they live longer but can they live a quality life? I think we’re going to find out a lot about this and we need the patient perspective, we need to involve the patient perspective in all these different discussions when actually the project takes priority and decides on priorities.
Can you tell us about the stakeholder forum?
The stakeholder forum has actually been set up in Work Package 6. What we are trying to do there is really integrate the opinions of the people that are not part of the consortium. Even though the project is a huge consortium of 66 partners we need to have the voice of the patients, of the regulators, of the payers, of additional clinicians which might not be part of the project at the moment and so on. To do this we need a stakeholder forum so that’s why we’ve set it up so the processes are clear. We now need to consult the different groups, we need to bring in the patient umbrella organisations as well to make sure that they are embedded in all the work. So the stakeholder forum is now on its way to really provide meaningful input into the project.
