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Real Patientdriven research, Crowdfunding & Crowdsourcing

(Exerpt from The Radbode December 2012)

The mission statement of the Radboud University Medical Center in the Netherlands  : “The patient as a partner” will get a new dimension. As of December a threefold rocket will be launched, where patients together with their family and informal care will come up with research-ideas and patients will also try to raise the money for chosen research ideas. ‘This will start a new movement” according to the initiator Lucien Engelen.

‘Doing medical research without the cooperation of patients is like car-racing backwards blindfolded’ says Lucien Engelen, director of REshape, the innovation center of the second largest Academic Medical Center in the Netherlands. And so he is launching an idea that will take away the blindfold and give the patient the role as navigator.

Engelen uses ‘weapons’ of our time like crowdsourcing and crowdfunding. Through the use of these weapons knowledge and money from large amounts of people could be activated. ‘These weapons are momentarily used in the fields of art and culture,  but as well in the field of new technology and communications scene. We are going to use them to increase the influence of patients on research’. It will start with the creation of online communities where patients, family and homecarers can meet, share ideas  and discuss questions about one type of disease. An example of an already existing community is ParkinsonNet. “We will ask communities like those for ideas for research. Let’s face it THEY are the experts in HAVING the disease. We don’t ask for costly, long-term research questions for new medication, no, we ask the patients how we could do something that will improve their daily life let’s say within a year?’

From of  all the ideas that come up the community they themselves will choose through a voting system (‘a kind of “liking” on Facebook’) and for a starter the top 3 ideas will be molded into by a research plan  by research writer . Actually two plans; one for submitting to grant-funds and the other in common language: what will have changed after the research has been done, to raise donations from their own surroundings ? An advisory board will look at the research plan as well to make sure that all research standards are being met. Sometimes this advisory board will be broadened with expert in the specific field. When all involved agree, the plan will appear on the website of MedCrowdFund™.

‘Singing Around’
After the publication of the plan the community will start to “Sing around” in their surroundings like family, work, friends asking others to donate money to actually start doing this research. They will also ask their connections to spread the word. ‘The money will only be withdrawn when the needed amount is reached and the project will really start’, according to Engelen. ‘The maximum size of the aimed research will approximately hundred-thousand euro we expect, in no way smaller research will be less important, but we’ll have to see what happens.  It has never been done up until now; patients designing their own research, funding i tand guiding the process themselves.

Finally the community will chose a researcher with the help of MedCrowdPitch™, a website where researchers profile themselves and their expertise in a videoclip, and where they can candidate themselves for a research plan. Community members can see per subject which researchers are specialists in the field, and thus decide who they prefer. ‘We expect this to be a Global operation in the end, there is no fence around the internet ;-)’


Patients as shareholders of research projects

‘Academic institutions do research fór people, not with people’, is the conclusion of Gert Westert van IQ-healthcare. ‘Lucien Engelen of REshape wants to involve patients more in research, I really like that.’ 

The Dean of the University, Paul Smits, also likes the idea. ‘it brings science into the living room.’ We have to be careful though that this will not be done at the expense of fundamental research, says the Dean. Engelen expects this to be a different area also on the level of funding.

 ‘The fundraisers and the medical researchers knew how the find one another. That yields a lot of research but the question whether patients benefit from this research on short notice must be asked.’ Professor Gert Westert, head of IQ Healthcare one of the leading Quality research institutions of the world, has his doubts. ‘Take chronic diseases for example. To patients it matters how to live with a chronic disease but research is focusing on the cause and how to prevent a disease. Do we have to target all the available money for dementia research in searching for the mechanisms behind the decay of the brain? Or do we have to listen to patients and their relatives to find out what we can do for them as well?  Mind you I’m not arguing that the lab research shouldn’t be done, but we need to find a balance, the right balance in fundamental and applied research. Nowadays the balance is hard to find sometimes.’ According to Westert patients are well capable of pointing at places where things can be improved in healthcare, especially the ones with a chronic disease. “Of course, patients differ. But a fair amount of the chronic disease patients can point perfectly at the problems and important facts in healthcare research.’

 ‘The power of the patient is given a central place in this new REshape initiative, and that is very important’, says the Dean and vice chair of the Board of the Radboud University Medical Center, professor dr. Paul Smits. “Patients know very well where we have to head for on short term. I expect a lot of ideas for applied research. On the other hand as a University Hospital we cannot neglect fundamental research, that starts with molecules and cells. Otherwise you will lose touch with fundamental research in the long run.’

Through MedCrowdPitch™ patients can chose researchers by watching videoclips. In these clips the researchers promote and present themselves and the research that they have been doing. ‘This is how we stimulate the researchers to give a sharp profile of themselves. That is what we need. To me it is also about being accountable for the work that you have been doing with (often) public money. There is more to it then publishing a paper in my opinion’, says initiator Lucien Engelen.

‘It is important that we are being provoked to make a good impression, that is a dexterity that is underdeveloped’, acknowledges Westert. ‘If you can explain clearly what you have found, you are probably better able to debate with the buyers of your product.’

The expectation is that also established money lenders will take part in this initiative. Westert: ‘If there is a lot of activity on a certain research project from patients, it may be so that health insurers, industry or the government will take part as well because they want to be a part of the project. Engelen: ‘Imagine that 50 thousand Euro is needed and they’ve already raised 35 thousand. A Pharma company might think: patients that use my medication need 15 thousand euro and we are willing to pay that for them, to help them with their every-day-challenges. I have spoken to various fundraisers, government and Pharma companies and they say they see this as a very interesting development.

Very dynamic
MedCrowdFund™ also will have a module for events, like a concert for example. ‘You can announce the concert through the website, people can buy tickets there and handle all the rest of the stuff including sending tickets, mail lists etc. The money goes straight to the selected research project’, explains Engelen. The power of the concept is in the direct relationship between the donation and the goal and often even the person. ‘Collecting boxes in some way a kind of a black boxes. You put a coin in and you haven’t got a direct clou about what is going to be done with it. That is ok to finance i.e. fundamental research, but we think it is time for a field bext to it. Our way is to make clear to everybody for whom you are doing it and for what you are doing it. Strong ties will help to thrive this kind of research’

Westert: ‘Another advantage is that if people invest in a project, they are also interested in the results. That involvement gives a lot of dynamics to a project.’

Actually the patient becomes a kind of a shareholder ? Engelen: ‘Certainly. It is even better: they come up with the plan, raise the money together, decide who is going to do the research and in the end they ‘own’ the results. Patients are the big shareholders. And the data will be in an open datarepository, not only the results but also the rough data, to be reused for a next project’

In a year from now? Engelen: ‘I have no idea, we’ll have to see. I take it that patients are more capable to collaborate in this than many might give them credit for. My hope is that people with good ideas about the improvement of healthcare can find a place here. And how small even the result of the research, a small change can make a big difference in the life of a person. Then everything is profit.

In December the first pilots will start as a proof of concept, amongst others with ParkinsonNet. Also see MedCrowdFund™ or MedCrowdPitch™

Launch is in next January.

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Thanks to Jacqueline Vernooij for the help on the English translation.







Lucien Engelen

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