Reports of medicines
CONSUMER INSTITUTE FOR
MEDICINES AND HEALTH
We are living in an age when competition and business principles are guiding lights in health care; when the marketing strategies of the pharmaceutical industry target the consumer directly, target us all as current or future patients, when markets are more open than ever before to drugs as well as to other methods of treatment, and when we drown in the daily avalanche of ads for alternative/ complementary treatment, the mass media's promises to reveal "the whole list" of hazardous drugs and health advice of all kinds.
For better or worse.
The question is:
When is it to our advantage?
When it is not, what kind of protection can we expect?
Faced with ongoing developments, we as consumers of the services and products of the health care system - face a lot of difficulties, unfortunately without adequate protection.
How are we to know that the new drug, that everyone is talking about or the new treatment method described in the newspapers, is right for us? How can we find out about the risks inherent in the much-talked-of new medical innovation? How can we protect ourselves against possible injury?
The county councils protect themselves via the patient insurance, the drug industry via the medicine insurance, but the consumer may search in vain among his or her insurance policies for one which covers treatment injuries.
We are living in an age when we, as consumers of health care, have to make the most of our own knowledge and take responsibility for ourselves.
There is at present a unique and utterly invaluable source of knowledge about drugs and other treatment methods, a source that unfortunately is not appreciated for the value it represents. We are talking about the direct experiences of the consumers themselves.
By now we at KILEN-Consumer Institute Medicines and Health have gathered 25 years of experi-ence of making use of the unique knowledge represented by people who have themselves suffered from adverse drug effects and other treatment injuries. We have learned things which cannot be learned any other way. We have learned things that it has taken 20 years for science to document. We have learned things which have become very important as a complement to existing knowledge.
Unfortunately, we have also learned that when the individual presents this information to physicians or government agencies, he or she is not taken seriously.
We base our work on direct contact with those afflicted by the problem by providing counseling, support and direct assistance. This work has taught us about drug-related injuries and how to treat them. It is against this background that we have developed our treatment methods, our emphasis on the important of compiling patient experiences, evaluation methods and impetus for preventative efforts.
Preventative work has been an integrated component of activities right from the start. We work preventatively by disseminating knowledge by way
of training courses, lectures and publications, knowledge, that has been established in working with those directly afflicted by the problems as well as people in their surroundings. We spread the word among the general public, politicans and professional groups. Here too, it is the experience of those who have first-hand experience of iatrogenic effects of health care who form the inspiration and expertise. It is only through their experiences that we can find out what has gone wrong, what should have been done instead and what to do in the future.
The ELIN Consumer Data base
is an important part of the preventative work.
ELIN is an instrument for the early detection of drug side effects, a tool which has been developed and elaborated upon at KILEN. It is a consumer data base to which the drug user him- or herself can report drug side effects or suspicions thereof. Of course, it is also open for reports from physicians and other who may come in contact with drug side effects. What makes it unique and makes it possible to identify risks before other reporting systems is the fact that the end users can communicate their experiences themselves.
ELIN reports are compiled at KILEN and disseminated to government agencies and other relevanta parties. Important results are also compiled and disseminated via the KILEN homepage.
CONSUMER INSTITUT FOR MEDICINES AND HEALTH
Is a centre of excellence in developing consumer knowledge of drug and health issues
Works across national and professional borders
Works to make use of consumer/patient experiences, and for these to become the driving force for development
Works so that the people who suffer ill effects, those who are injured by drug and treatment effects, are not liable themselves
Works to establish a dialogue between consumers and producers in health care
Establishes new knowledge on the basis of consu-mer experiences, research and science committed to assisting and protecting the consumer
Disseminates knowledge in every conceivable way to whomsoever is interested
Provides support, assistance and advice
CONSUMER INSTITUT FOR MEDICINES AND HEALTH
Declares that health care is of central important for the individual and the society, and that we all are responsible in this context
Assert that the responsibility we as consumers are willing to assume should be respected and received by the producers taking on the corresponding responsibility
KILENs foundation stones
Postal adress: Kammakargatan 7, S-111 40 Stockholm Telephone: +46 (0)8-696 01 00. Fax: +46 (0)8-696 01 10