Science is a participatory adventure

By Chartofylaka Lamprini In EdTech — Open science On April 10, 2016

1.“Open Science”

One of the courses we had during the 1st semester of the EdTech master at CRI-Paris was about “Open Science”. In brief, open science is the movement in which scientific research, collection of data and dissemination of any sort of outcomes extracted are accessible to all people, non-professionals and experts of the kind. Each person also contributes to the process by sharing their own competencies in a way of democratizing the knowledge and developing it in a collective manner; all in all in a global network without limits. This allows a massively distributed collaboration, and one in which anyone may participate at any level of the project. It is important to summarize the main principles of open science:

  • Open Data: data free to be re-used
  • Open Methodology: methods, procedures and relevant documents to be known
  • Open Source: open software and hardware to be used
  • Open Peer Review: transparency procedure, open-access for all to be guaranteed
  • Open Access: research outputs without restrictions on access to be assured
  • Open Educational Resources: openly licensed documents & media like the ones used in distance learning are especially encouraged to be used

2.Project “CancHeal”

During our Open Science sessions, we, the M1 EdTech students had our (first) experience on tinkering with a citizen science project which we now called “CancHeal”. The objective of our interdisciplinary work was to create a prototype of a data base including cancer patient information and that it will ideally run an adaptive algorithm based on user profile. In this way, it would be feasible in the future to encourage and personalize cancer treatment and recovery.

3.Personal involvement for “CancHeal”

My work for this project was mainly to do a research synthesis on similar projects that address the same issue and future aspiration. After a long analysis, using discipline-specific and specialized resources on the matter, I was able to extract some outcomes that I could communicate with my colleagues. First of all, our idea for “CancHeal” was much inspired by the initiative of the American Society for Clinical Oncology called “CancerLinQ” , a revolutionary project for cancer treatment which aims at processing the vast amount of data from cancer patients so as to enhance their personalised health care system and to deliver tailored and high-quality results for them in the future. I found ample projects related to the use of big data for ameliorating the cancer treatment using technological tools, big data collected not only from doctors’ databases or medical institutions, but also from cancer diagnostic tests (such as biopsy) and DNA-sequencing machines. The majority of projects have been developed in United States of America, this stunning fact proves the urgent need for Europe to move forward towards the conception and development of (citizen) projects for combating cancer. It is important to mention that time (December 2015), there was an interesting “call for project” called Epimedium which was launched on November 2015 in France by the Pharmaceutical Group Roche (FR) and the ideas innovation laboratory “La Pallaisse” that rose to the challenge of taking actions to improve cancer treatment. During my research concerning datasets and cancer treatment, two projects appeared to be major breakthroughs that helped profoundly any further research, understanding and project development around cancer treatment: the Human Genome Project (HGP), 2003 and the Cancer Genome Atlas Project (HGP),2006. The Human Genome Project is a huge collaborative project that was completed officially on 2003, after almost 20 years of high research, experimentation and scientific work. It was developed by the National Cancer Institute & the National Human Genome Research Institute in USA. It achieved to map the human genome which is different for each individual and that involves sequencing and identifying the multiple variations and functions of each gene. The Cancer Genome Atlas Project is a three-year pilot program that officially started in 2006 in order to catalogue the genetics mutations on the human body responsible for the appearance of cancer. It is supervised as well by the National Cancer Institute & the National Human Genome Research Institute. The pilot program aimed at identify the characteristics of three types of human cancer: glioblastoma multiforme (brain cancer), lung, and ovarian cancer. Other firmly related projects are: The Cancer Genome Anatomy Project (NCI) and The Cancer Genome Project (Wellcome Trust-Sanger Institute, UK).

A selection of the most relevant projects with our collaborative project “CancHeal” can be found on my Prezi presentation:

4.Impressions/Learning during this course

  • The cross disciplinary approach into an interdisciplinary project: the fact that treating information during my research when my in-depth knowledge on this important matter was insufficient, it was a challenge for me but in the end I learned a lot more on the nature of cancer/cancer care/medical practices. √
  • The spirit of “open” principles that these kind of projects are being developed such as the idea that the programmer and the user are at the same position. These principles foster and promote transdisciplinary connections in our society. √
  • Scientific interpretation, in several occasions during the sessions of this course, each of us had to present their findings at that given time. For me, it was an interesting experience to find a way to simplify the content of my research findings and communicate them to my colleagues efficiently since we all come from different backgrounds.
  • The fact of getting inspired from an already existing project (CancerLinQ) and trying to convert it and adjust it in our disciplines and interests was a difficult task for us. However, I enjoyed our first sessions when we generated the idea of our upcoming project. We exchanged ideas as far as the optimization of the process for the patient was concerned, what information should be included, how to make our product appealing ; in general, how to insert data and extract solutions. √

All in all, making the scientific approach and knowledge accessible to all parties also contributes to the empowerment of our societies and the democratization of its procedures. When we participate in collaborative endeavours like open citizens projects, we leverage society’s potentials in becoming more socially inclusive.

Originally published at

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