A patient driven research platform
Can a patient co-design a clinical trial that is related to his disease? We have met these days Delos Clinical, a different CRO. Specialized in clinical trials, Delos created Manthano, a crowdsourcing and crowdfunding platform that heavily engages patients. This is why we asked Emilio García Cabrera, from Delos Clinical, to write a post about Manthano.
By Emilio García Cabrera
Usually patients have been considered rather passive research objects. This means that they participate in the development of a given research, but they do not have a voice, expcept their voluntary participation in research. At Manthano we have gone further and it is the patient himself who can propose a study or a research idea, make contributions to a given protocol and contribute to funding.
Patient engagement from the very beginning of a trial or research has a fundamental advantage: its understanding of the issue and the possibility to adjust design to real patient needs.
A crowdsourcing and crowdfunding platform
Manthano is a space were patients, researchers and funders can meet and sset up clinical research studies that improve prevention, diagnosis and treatment of diseases. It is interesting to watch this video (in Spanish) to understand better how Manthano works:
Manthano aims to needs of patients and researchers that are interested in participating in a more active way in the design and development of clinical studies. Manthano works as a loudspeaker for the sick so that they can bring their needs to the research community, as well as their ideas for better treatment.
The platform is an instrument to get support and resources to set up theit own research project. For all these reasons we have designed Manthano as a web page divided in three parts:
- A forum to harvest ideas that can become research projects
- A wiki where to write in a collaborative way research protocols
- A crowdfunding place that can bring in the necessary resources for the projects.
This platform is an initiative from Delos Clinical , a clinical research organisation (CRO)
that provides services to researchers in order to design and set up their clinical research projects.
With Manthano we want to give answer to today’s great challenges in clinical research. The first one is that many studies do not conclude due to the lack of patient inclusion. This can be solved if the study was more adjusted to patient needs in real life. This is why their engagement during the design phase is so important. The other big challenge are all those pathologies that are not well covered by research because their lack of commercial interest or because they are so rare that they do not catch research attention.
Unlike other platforms, at Manthano the patient is not onnly involved in fundrising, but he plays a central role in the design and set up of the research project.
A patient with an idea or research need enters the forum and proposes an issue. From Delos clinical we give him scientifi advice inn order to improve the project. The same patient works as project ambassador at social media, involving hs doctor and he his fellow colleagues until there is enough critical mass of engaged patients and researchers. Later the research protocol is wwirtten down, where the patients names a co-ordinating researcher that writes the project with the support of every team member. Once the project is written it enters into the crowdfunding phase.
This platform works since november 2015 and we have observed that there are some difficulties to start debates that on the other hand are easily prooduced in social media like twitter. Despite this fact, some users have started very diverse research issues that go from the use of omeprazol, the increase of cardiovascular risk or produce evidence for apitherapy (a branch of alternative medicine that uses honey bee products). Yet it is still difficult to achieve a more active patient involvement.