| conclusions /
statements
meeting patientorganisations
organised by eags
strasbourg, 27 may 2002 |
|
1. Revolutionary progress in basic sciences provide many
options for benefits for patients in terms of early detection
of disease, accurate diagnosis, prediction of prognosis and
of therapy and prevention. This progress also offers opportunities
for timely decision making concerning subjects such as planning
towards career, family and life style and also for better
disease management.
It is seen as a challenge and duty for patient organisations
to turn the progress of science into tangible benefits for
patients based on need, potential benefit and a commitment
to equity of access and otherwise based on responsibility,
quality, safety and transparency.
Representatives of patientorganisations and scientific speakers
reported about a number of diseases which could be treated
affectively thanks to the new genetic knowledge and technologies
such as by enzyme replacement therapy (as in Pompe and Gaucher's
disease), genetic therapy (as in SCID) , re- combinant clotting
factor).
2. There are strong and well coordinated groups (environmentalists,
anti-abortionists, some religious parties) and also political
parties who oppose genetics as they see little benefit and
plenty risk.
3. Patient organisations are in a disadvantaged situation
due to lack of financial resources, pressure on time, demands
of their condition on their health or family situation. Patiewnt
organisations should be enabled to play their role in the
political arena. It is of vital importance that patient organisations
are able to influence policy and be part of decision making
in the European institutions. Patient organisations have the
potential and could generate the expertise (given the opportunity)
in ways that would change the focus of the science of service
delivery for the better.
4. Society need to be prepared for the new options, the new
opportunities and for the chances and risks which the new
healthcare increasingly will provide and which lead to more
adequate and timely disease management and may ultimately
lead to health maintenance . Information and education are
seen as the pillars of which an interested and alert society
can face the future in connection with the fast scientific
progress.
5. With respects to the promising progress of science on the
one hand and the great needs of the patient on the other side,
it was considered necessary to collaborate with all parties
who could contribute to early and accurate diagnosis and to
therapy and prevention of disease. This includes groups from
science, industry and capital, political parties, governmental
and non governmental organisations and institutions.
6. Issues where change or action was considered relevant
| a. |
agenda setting and research planning in the academic
setting |
| b. |
education of professionals, policymakers and planners
in healthcare systems |
| c. |
coordination and integration of initiatives to stimulate
the interests from the scientific and commercial sector
for rare diseases and orphan medicinal, products |
| d. |
development of policies and protocols to ensure that
relevant information reaches the people I need in time
and appropriately. |
| e. |
the linking of existing networks (of information of
the lay groups and the professional societies) to boost
exchange and build shared knowledge |
| f. |
support for the role of patient organisations towards
clinical trials (information and recruiting trial volunteers,
collaboration with researchers) |
| g. |
public communication - addressing the issues that cause
public anxiety to be sturred up and promoting a patient
centred response |
| h. |
multi ethnic society issues - making sure that research
efforts and healthcare facilities address the needs of
all European citizens |
| i. |
the need for collaborating with networks such as the
European Molecular Genetics Quality Network, the UK Genetic
Knowledge Parks and the Dutch Orphan Drug Committee to
build better services and stimulate the application of
research in the form of new products and services |
| j. |
developing mechanisms for establishing the real cost
of genetic disease for families and factoring these into
calculations of cost effectiveness used by health care
systems f.i. to determine whether or not to fund new treatments. |
|
