Type of site | Open database of innovations developed by patients and caregivers |
---|---|
Available in | Multilingual |
Owner | Patient Innovation Association (non-profit) |
Created by | Pedro Oliveira |
Revenue | Non-profit |
URL | patient-innovation |
Registration | Optional |
Launched | 7 February 2014 |
Current status | Active |
Patient Innovation is a website that shares solutions and ideas developed by patients and informal caregivers for managing personal health issues. It is a non-profit and also provides rating tools and options to report and track modified solutions that these individuals develop.
Patient Innovation started as an academic research project aimed to study user innovation [1] by patients and their non-professional caregivers, [2] funded by The Portuguese Science and Technology Foundation (FCT), [3] Carnegie-Mellon Portugal Program [4] and Pieter Pribila Foundation. [5] The project was founded by two Portuguese academics and researchers Pedro Oliveira and Helena Canhão.
As one of the project's outcomes, the online platform was launched on February 7, 2014, at an inaugural event in Lisbon, Portugal. [6] The project is supported by a number of distinguished individuals, including Nobel Laureate Sir Richard J. Roberts, [7] Eric von Hippel, Nobel Laureate Aaron Ciechanover, Katherine Strandburg, Robert Langer, Lee Fleming and Keld Laursen – who serve on the Advisory Board.
Patient Innovation is led by Prof. Pedro Oliveira from Copenhagen Business School and Prof. Helena Canhão from the FCM - NOVA Medical School. The project team includes medical doctors from FCM - NOVA Medical School.
Patient Innovation terms of use include the agreement that users do not include the content that promote "self-mutilation, eating disorders or hard drug abuse". To enforce the terms of service, all the submitted solutions go through a screening by the project's medical team, who check whether for submission complies with the terms and services advertised on the Patient Innovation site. Only the validated solutions are posted on the platform. In 36 months, over 850 solutions developed by patients, (non-professional) caregivers or collaborators from over 60 countries were submitted, curated and shared to improve the lives of many other who struggle with different health conditions.
Patient Innovation promotes the annual Patient Innovation Awards for patients, caregivers and collaborators who have developed innovative solutions to cope with the challenges of their health condition, to assist others they care about, or in some cases, to help people they don't even know. The winners of the 1st Patient Innovation Award were announced in February 2015. They are:
The 1st Patient Innovation Award Ceremony was held in Lisbon on July 13, 2015 at the Calouste Gulbenkian Foundation. European Commissioner Carlos Moedas was one of the distinguished guests. [15]
The winners of the 2nd Patient Innovation Award were announced in February 2016. The 2nd Patient Innovation Award Ceremony was held in November 2016 during the WebSummit. They are: [16]
The winners of the 3rd Patient Innovation Award were announced in November 2017 at the Calouste Gulbenkian Foundation. They are: [17]
The team conducts research on the role of patients of chronic diseases, and their caregivers, in creating new solutions to help them cope with their health conditions. Recently they administered a survey over phone to 500 rare disease patients/caregivers with the following objectives: to measure frequency of patient innovation in a population of rare diseases patients; to measure efforts by patients to share their solutions with others; to explore which factors drive patients to come-up with solutions and share them with others. The solutions reported by patients were validated for their novelty by two medical professionals. 40 individuals (8% of sample) reported solutions that they personally find valuable, and that are also evaluated as novel by expert medical evaluators. If anything like this fraction of innovators holds for the overall population of hundreds of millions of people worldwide estimated to be afflicted by rare diseases, patients and their caregivers may be a tremendous potential resource to improve management and care for many who are similarly afflicted. [18] [19]
Von Hippel–Lindau disease (VHL), also known as VonHippel–Lindau syndrome, is a rare genetic disorder with multisystem involvement. It is characterized by visceral cysts and benign tumors with potential for subsequent malignant transformation. It is a type of phakomatosis that results from a mutation in the Von Hippel–Lindau tumor suppressor gene on chromosome 3p25.3.
A rare disease is any disease that affects a small percentage of the population. In some parts of the world, the term orphan disease describes a rare disease whose rarity results in little or no funding or research for treatments, without financial incentives from governments or other agencies. Orphan drugs are medications targeting orphan diseases.
Palliative care is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses. Within the published literature, many definitions of palliative care exist. The World Health Organization (WHO) describes palliative care as "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain, illnesses including other problems whether physical, psychosocial, and spiritual". In the past, palliative care was a disease specific approach, but today the WHO takes a broader patient-centered approach that suggests that the principles of palliative care should be applied as early as possible to any chronic and ultimately fatal illness. This shift was important because if a disease-oriented approach is followed, the needs and preferences of the patient are not fully met and aspects of care, such as pain, quality of life, and social support, as well as spiritual and emotional needs, fail to be addressed. Rather, a patient-centered model prioritizes relief of suffering and tailors care to increase the quality of life for terminally ill patients.
Sanfilippo syndrome, also known as mucopolysaccharidosis type III (MPS III), is a rare lifelong genetic disease that mainly affects the brain and spinal cord. It is caused by a problem with how the body breaks down certain large sugar molecules called glycosaminoglycans (also known as GAGs or mucopolysaccharides). In children with this condition, these sugar molecules build up in the body and eventually lead to damage of the central nervous system and other organ systems.
Eric von Hippel is an American economist and a professor at the MIT Sloan School of Management, specializing in the nature and economics of distributed and open innovation. He is best known for his work in developing the concept of user innovation – that end-users, rather than manufacturers, are responsible for a large amount of innovation. In 1986 he coined the term lead user to describe this phenomenon.
Hepatomegaly is enlargement of the liver. It is a non-specific medical sign, having many causes, which can broadly be broken down into infection, hepatic tumours, and metabolic disorder. Often, hepatomegaly presents as an abdominal mass. Depending on the cause, it may sometimes present along with jaundice.
A patient safety organization (PSO) is a group, institution, or association that improves medical care by reducing medical errors. Common functions of patient safety organizations are data collection, analysis, reporting, education, funding, and advocacy. A PSO differs from a Federally designed Patient Safety Organization (PSO), which provides health care providers in the U.S. privilege and confidentiality protections for efforts to improve patient safety and the quality of patient care delivery
The Institut national de la santé et de la recherche médicale is the French National Institute of Health and Medical Research.
Orphanet is an organisation and knowledge base dedicated to rare diseases as well as corresponding diagnosis, orphan drugs, clinical trials and expert networks.
Manav Rachna University is a private university located in Faridabad, Haryana, India. It was established as Manav Rachna College of Engineering (MRCE) in 2004 and became a university in 2014.
The World Health Summit is an international conference that has been held in Berlin every October since 2009. It has developed into one of the world's leading global health conferences. It was held for the first time on the occasion of the 300th anniversary of the founding of the Charité. 2,500 experts from around 100 countries from science, business, politics and civil society discussed the most important issues of global health care and made recommendations. The academic backbone of the event is the M8 Alliance of Academic Health Centers, Universities and National Academies. From the very beginning, the World Health Summit has been under the patronage of the German Chancellor and the French President. Since 2019, the Director-General of the World Health Organization (WHO) has also been a patron of the World Health Summit.
The Rare Diseases Clinical Research Network (RDCRN) Contact Registry is a patient contact registry started in 2004 and sponsored by the National Institutes of Health (NIH). The RDCRN Contact Registry collects and stores the contact information of people who want to participate in RDCRN-sponsored research or learn more about RDCRN research. It connects patients with researchers in order to advance rare disease research.
Jeroen Tas is a Dutch entrepreneur and senior executive in the healthcare, information technology and financial services industries. In February 2017, he assumed the role as Chief Innovation & Strategy Officer at Philips Healthcare, a position he held until July 2021. He currently works on Strategic Business Development and is also a member of the executive committee at Royal Philips.
The Orphanet Journal of Rare Diseases is a peer-reviewed open access medical journal covering research on rare diseases. It was established in 2006 and the editor-in-chief is Francesc Palau. It is an official journal of Orphanet and is published by BioMed Central, which is part of Springer Nature.
Pedro Oliveira is a Portuguese innovation scholar who is Dean of Nova School of Business and Economics for the period 2023-26, succeeding Daniel Traça. He is also Calouste Gulbenkian Foundation Chair Professor for the Impact Economy and Full Professor at Nova School of Business and Economics, professor with special responsibilities at Copenhagen Business School, and an entrepreneur. Previously he was a professor of Technology and Innovation Management at Católica Lisbon School of Business & Economics. He is best known for his work in the notion of patient innovation and for founding the Patient Innovation platform. He is also an Academic Scholar at the Cornell Institute of Healthy Futures. Pedro was Senior Associate Dean for Faculty and Research at the Católica Lisbon School of Business and Economics and an International Faculty Fellow at MIT Sloan School of Management, where he worked with Eric von Hippel. He received his PhD in Operations, Technology and Innovation Management from the University of North Carolina at Chapel Hill.
Inspire is an Arlington, Virginia-based healthcare social network. It builds and manages online health communities for patients and caregivers, and connects patients to life science companies for the purpose of research.
Ada Health was founded in 2011, by Dr. Claire Novorol, Professor Martin Hirsch, and Daniel Nathrath.
BETIC based at Indian Institute of Technology Bombay is an inter-disciplinary multi-institution initiative for medical device innovation. Established in 2014 with support from the government of Maharashtra, it comprises a network of 14 engineering and medical institutes across the state. The BETIC team have developed 50 medical devices as of 2019, and licensed 20 of them to startup companies or industry for mass production.
Helmy Eltoukhy is an American scientist and a businessperson who co-founded startups Avantome and Guardant Health. He is best known for his contributions to genomics, semiconductor DNA sequencing, and personalized medicine. His startups were acquired by Illumina in 2008. Avantome was founded to develop and commercialize semiconductor-based DNA sequencing, during the race for the $1,000 genome. Guardant Health was founded to pioneer non-invasive liquid biopsy approaches for cancer diagnosis, monitoring, personalized medicine treatment, and research.
Catarina Resende de Oliveira is a Portuguese neurologist, researcher, university professor, and doctor. A full professor of biochemistry at the Faculty of Medicine of the University of Coimbra, she studies the processes that cause neurological degeneration responsible for illnesses such as Alzheimer's disease and Parkinson's disease.
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