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. 

Emilio_Manthano
Emilio García Cabrera, Delos Clinical

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:

https://www.youtube.com/watch?v=rRKQ0YjyhiI

 

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)

patient driven research
Source: Chordoma Foundation

that provides services to researchers in order to design and set up their clinical research projects.

Patient engagement
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.manthano

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.

Some results
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.

 


Puedes leer más de estos Insights relacionados

Te mantenemos informado con lo último en Experiencia del Paciente

IEXP
IEXP chosen as member of the Global Patient Experience Council, launched by The Beryl Institute

Healthcare Leaders to Partner on the Advancement of Human Experience Worldwide In expanding its commitment to elevate the human experience in healthcare, The Beryl Institute introduces its inaugural Global Council. The Council consists of professionals committed to elevating the conversation on human experience and expanding the global experience movement by collaborating with one another, sharing […]

IEXP Y LA ALEMANA ADMEDICUM FIRMAN UN ACUERDO PARA HACER LOS ENSAYOS CLÍNICOS MÁS SEGUROS Y REDUCIR SUS COSTES

IEXP y la alemana Admedicum, dos empresas líderes en experiencia de paciente, unen esfuerzos para expandirse por Latinoamérica y ayudar a realizar ensayos clínicos con enfoque centrado en paciente y disminuir así las tasas de abandono de los estudios clínicos. El 80% de los ensayos no cumplen el objetivo de reclutamiento de pacientes por el alto […]

First COVID-19 patient community is born

Acuam Healthcare, the company that created the patient platform Pacientalia® and the Institute for Patient Experience (IEXP) join efforts to give voice to Covid-19 patients and their family members.   The platform is available with no cost at iOS and Android. Patients can support each other, share their experiences after overcoming the disease, avoiding isolation […]

Solicitamos su permiso para obtener datos estadísticos de su navegación en esta web, en cumplimiento del Real Decreto-ley 13/2012. Si continúa navegando consideramos que acepta el uso de cookies. OK | Más información