What is Innovia?

INNOVIA was established as a non-profit Foundation in the Netherlands in October 2000.
Its objective is to facilitate a socially optimal development and deployment of new health care technology through multidisciplinary studies and related activities which focus in particular on the individual and collective experiences, concerns and aspirations of end users.
Health care is changing today in response to developments in technology, the economy and society. Internet and telemonitoring are transforming doctor-patient relations. New forms of support can be provided to people with disabilities or chronic illnesses, leading to the extension of active life or greater functional independence. Advances in genetics, immunology, and neuroscience suggest the possibility of much longer active lives. But not everyone has access to the fruits of modern medical science. New technologies and drugs are often expensive, and well beyond the reach of many in even rich countries and almost all in poor countries. In much of the industrialized world, growing acceptance of the right of patients (or ‘health care consumers’ or simply ‘citizens’) to participate in therapeutic choice, individually and collectively, is another important development.Despite the rhetoric, patient/consumer influence at the collective level is in practice minimal. When patients are invited to participate in decision-making, they are typically disadvantaged, either by their lack of organization (in many countries of the world), or by lack of access to the scientific competences that could endow personal experiences with the necessary authority. INNOVIA is committed to the idea that (social) scientific research taking their expectations and experiences as its starting point can enable patients and their organizations to make a more effective contribution to debate, and one more commensurate with today’s abstract discourse regarding patients’ rights. INNOVIA aims to produce and disseminate basic knowledge to inform both public debate and the work of patient organizations specifically.How does Innovia work?INNOVIA is a virtual research institute. Its Fellows, and other associates, are experienced researchers in the social sciences, ethics, history of medicine and the health care field, who share its concerns and commitments. They live and work around the world, and many of them work closely with local patient/health care consumer organizations. Through INNOVIA they collaborate in three different kinds of activities.ResearchINNOVIA provides a unique forum for collaborative and comparative research. Unlike most academic research, INNOVIA projects will always be conducted in close collaboration with representatives of patient organizations in participating countries. Studies now being planned include The globalisation of genomics and its consequences; People living with HIV/AIDS: the origins and scope of collective action; and Disability: strategies of rehabilitation and empowermentDisseminationINNOVIA aims to make the results of its own and other research available to patient groups, health care providers, and policy makers struggling to improve the quality of and access to health care and its technologies. It does this in various ways. For example, in collaboration with the Thai Programme on Health Prevention for People with Disabilities, an introductory textbook on Disability and Society has been prepared. This will provide health care providers, advocacy organizations and scholars in South and South East Asia with access to recent scholarship on the meaning of disability.Capacity BuildingIn some parts of the world established patient associations have recognized the value of research and have achieved some influence over the performance of research in the health care field. In those countries, examples of mutually rewarding and effective collaborations can be found. In other parts of the world this has not happened. There is a huge gap between the work of patient organizations (if they exist at all), and academic research. INNOVIA is committed to trying to bridge that gap: to showing the value of collaboration and to showing how collaborations can be developed.