Thousands of years ago, ancient Babylonians had a custom:
“…when a man is ill, they lay him in the public square, and the passers-by come up to him, and if they have ever had his disease themselves or have known anyone who has suffered from it, they give him advice, recommending him to do whatever they found good in their own case, or in the case known to them; and no one is allowed to pass the sick man in silence without asking him what his ailment is.”
At the time, the community was engaged in open and free exchange of medical solutions… but how have things evolved over four millennia?
Undoubtedly, conventional medicine and modern science have immensely improved our lives and increased our life expectancy. Yet, we still have a long way to go. For example, about 420 million people worldwide suffer from rare diseases and, for many, there is no cure.
Drug development for rare diseases is very slow. Rare Diseases Europe (EURORDIS) predicts that from 2009 to 2019 about 10 drugs per year will reach the market, increasing the base of about 400 drugs that reached the market in the last 30 years… still very far from the needs of individuals affected by 5000 to 7,000 rare diseases.
But… there are many patients who innovate!
The good news is that many patients and caregivers have developed solutions related to the illness they face on daily basis, that go beyond standard medical practice. For example, our research shows that about 50 percent of the treatments and medical devices for Cystic Fibrosis were developed by patients themselves.
Patients solve the problems they are experiencing and often end up saving the lives of many others.
A case in point, the low frequency vibrations device for bronchial drainage was developed by a Cystic Fibrosis patient named Louis Plante, who had to leave a concert because of excessive coughing, while sitting in proximity to a large speaker.
Being a skilled electronics technician, he developed a device that could generate low frequency vibrations.
Louis is a user innovator because his primary goal to develop the treatment was to benefit from using it. Later he created a firm to commercialize his solution.
Similarly, Tal Golesworthy, a process engineer who suffers from Marfan syndrome, developed a valve to repair his own heart and radically changed standard medical practice for artery dilatation issues. And there are thousands of similar examples.
These innovative activities by patients usually occur behind closed doors and might never be known or used by anyone other than the innovators.
What if patients’ solutions could be shared and further developed by other patients, caregivers and interested individuals in an open and collaborative manner?
We strongly believe that openly sharing successful innovations and knowledge with other patients with similar needs could improve the lives of many patients and help advance knowledge about diseases.
Sharing solutions, improving life
As a consequence of our research findings, we started developing a social network called Patient Innovation (expected by the end of 2013).
It is a platform designed to allow patients and caregivers to show and share their answers and practical solutions developed to fight their diseases.
By sharing, patients help themselves and others, stimulating value creation from the network effect – the contributions of others for the same solutions or alternatives helps create a unique database of solutions developed by patients with different diseases.
This database is searchable by diseases, solutions and symptoms, and is self-managed by patients.
Apart from the two distinguished individuals whose endorsements are featured in the picture above, Sir Richard Roberts (Nobel Laureate in Physiology or Medicine 1993) and Prof. Eric von Hippel (MIT), we are very honoured by the support we have received for this project from reputable individuals such as Prof. Aaron Ciechanover (Nobel Laureate in Chemistry 2004), Prof. Carliss Baldwin (Harvard University), Prof. Francisco Veloso (Católica Lisbon School of Business and Economics), Mr. Joi Ito (MIT Media Lab), Prof. Kathrin Möslein (University of Erlangen-Nuremberg), Prof. Katherine Strandburg (New York University), Prof. Larry Lessig (Harvard University), and others
- Do you think development organizations working on health can benefit from our approach?
- Are you interested in partnering with us or contributing to our research?
- Are you aware of examples of patient innovation in the Eurasia region?
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