Proceedings of the First Meeting of
Uveitis Patient Interest Groups
Notes and pictures by Lancelot Pecquet (comments and corrections to
lancelot@pecquet.org).
Thanks to Professor Manfred Zierhut for organizing this first meeting,
to Matthias Nahm for providing information about DUAG and for the list of participants
and to all participants for support and comments on this page.
Introduction
Professor Manfred Zierhut, Director of Deutschen Uveitis Arbeitsgemeinschaft
(DUAG) has invited the uveitis patient interests groups of the
world to come to a satellite meeting of the sixth International
Uveitis Study Group Symposium on September 19th, 2004, in the
Laguna Palace Conference Center, Venezia-Mestre, Italy.
The participants
The participants were
(click here to mail all participants):
Discussion
Presentation of the groups by their representatives
The meeting starts at 16:00. Professor Zierhut welcomes all groups and
invites each representative to talk, during 5-10' and present his/her
group:
- history;
- structure;
- how the information is given to patients;
- funding;
- website;
- current projects.
Mr Phil Hibbert presents the Uveitis Information Group (UIG)
This patient group was created by himself, with the help of
Pr Andrew Dick and Pr John Forrester when they worked in the
Department of Ophthalmology of the University of Aberdeen. This
patient group seems to be the only one in UK for uveitis.
Mr Hibbert soon noticed patients had a big demand for information
but could spend dozens of hours on the Internet trying to get
information which was not always relevant to uveitis. As a dentist,
Mr Hibbert could read and translate medical information more
easily and write articles in plain English that describe the different
aspects of uveitis to patients. A Factually based newsletter is
produced twice a year and information leaflets are produced. Regular
meetings are being established in different regions of the UK. Funding
is not a real problem since the information is mostly given on the
internet site. The membership fees are £5 (about 8¤) and are not
systematically required (people from overseas or who can't afford
it). Most people make a donation. The UIG committee has four members
who meet once per year. The UIG has been developing a website (www.uveitis.net) for
3-4 years. The number of emails coming from other countries
(South America, India...) exceeds the number of emails IUG receives
from the UK. Current projects are the organization of local meetings
all over the country since there are many requests for such
gatherings.
Mr Lancelot Pecquet presents the Inflam'oeil
group. Mr Pecquet notifies the apologies of Mr Jean-Yves
Bozec, President of Inflamoeil, who couldn't come himself and, in his
name, thanks the organizers for this opportunity. Some slides describe the group,
which was founded in April 2002, by some patients and uveitis
specialists of the Department of Ophthalmology of Pr Le Hoang, at
Pitié-Salpétrière Hospital. The group has now about 120 members
in France. The administration committee has 15 members that meet
every three months. A bulletin called Tyndall
is sent to the members. An abstract version, called mini-Tyndall,
is more widely spread, as an advertisement. Funding is still an issue
that hasn't been solved so far and the membership costs 42€/year,
mostly to cover the printing and shipping fees of Tyndall and
mini-Tyndall. Inflam'oeil has a website (www.inflamoeil.org). There is a
Scientific Committee, headed by Pr Susan Michelson. Inflam'oeil
welcomes patients at some hospitals, and has local contacts everywhere
in France. Among current projects: link an experimental website
with dynamic features to the current website, write a booklet on
uveitis for patients, organize an information day on uveitis,...
NB: A Behçet's disease French group also exists: L'Association de
Behçet.
Ms Marije Varenbrink and Ms Josefien de Vos present the
Dutch group. This patient group was created in 2003 by Ms de Vos,
with the help of other patients. This patient group is the only one
for uveitis in the Netherlands. The group has about 55 members at the
moment and two medical advisors. Contact with other patients and
information about uveitis and medications, etc, are the most important
issues. The group has a yearly gathering and 4 times a year a
newsletter. The uveitis group is federated by a roof organisation, the
Dutch Organisation for Blind People and People with Poor Vision (NVBS,
Nederlandse Vereniging van Blinden en Slechtzienden). NVBS has a
website (www.nvbs.nl) on which all
existing group of patient with eye problems are represented. In the
future, the Uveitis group will have its own website. The name www.uveitis.nl is already reserved.
The membership fees are 26.50€ for the NVBS which funds back the
uveitis group.
Pr Andrea Leonardi regrets that there is no patient interest
group in Italy but hopes that the present work can help in creating
one.
Mr Matthias Nahm and Ms Cindy Rosenthal represent one
local group of patients federated by a roof organisation, the German
Uveitis Patient Interest Group (Deutsche Uveitis Arbeitsgemeinschaft,
DUAG). Their local group is working in the south-west of Germany. The
group was established in the middle of 2003. They have already
organized 3 meetings; the last one gathered more than
40 people. The meetings consist of a medical lecture of an
ophthalmologist (e.g.: structure of the eye and manifestation
of uveitis) and in a discussion ruled by the questions of the patients
and interested people. Apart from meetings new uveitis patients can
get information via telephone call or e-mail. There is a link to every
local group on the website of the DUAG (www.duag.org). A general list of
specialists is available on the site, too. Mr Nahm and
Ms Rosenthal also represent the DUAG in foreign
countries. In 2003 they took part at the opthalmologic society of
Switzerland (Schweizerische Ophthalmologische Gesellschaft, SOG) in
Lugano. One purpose was to distribute the journals and brochures of
the DUAG. They had also a chance to get in touch with Swiss
ophthalmologists and interest groups like Retina Suisse or
Visoparents.
Pr Zierhut explains that the DUAG was created in 1996. Pr Zierhut
says that he was a bit skeptical at the beginning. Then he understood
the interest of having an organization. This could create information
material for local groups, support them and have a political and
educational role at a national level. Altogether, the local groups
federated by the DUAG represent about 800 people. The number of
members increases by 10-15% per year. The DUAG publishes a journal (Uveitis)
and is now represented in all national ophthalmology congresses. The
DUAG awards every year the three best articles in clinical and
experimental research on uveitis (Uveitis Award). It organises
yearly an educational meeting of 100-150 persons for patients
together with ophthalmologists. These meetings and the journal is
supported by some health insurances and pharmaceutical companies. The
membership fees are 20€ per year paid to the DUAG
directly. Membership is free for people that can't afford the fees
(5-6 persons each year).
Towards an International/European Uveitis Patient Interest Group
In the next part of the meeting all participants were asked to
comment, if they think an International/European group would be
worthwile to found. They should also define what goals we could
archive with such an organisation, what goals would be too difficult
to reach for national organisations and if they would participate in
such a project.
Do we need an International/European Uveitis Patient Interest Group?
Everybody agrees that having such a group could be very useful for all
national groups. All participants agree to contribute to this project.
Dr Edelsten remarks that restricting ourselves to Europe,
for now, would make things easier.
Pr Zierhut underlines that, some East-European countries could
benefit a lot from such a roof organization as well.
Pr Zierhut asks: what are the first and the following topics for
such a new group?
An international journal?
Pr Zierhut proposes an international journal that could be
printed on large scales (50000 copies), in China or in India for
instance. One could save money on fixed costs (e.g. graphic
design) and time on writing articles. Translation would still be
necessary, though.
Mr Hibbert underlines the risk of potential problems on medical
consensus in the articles.
Mr Pecquet suggests that one reserves the 10 last pages for
local information.
Mr Nahm thinks that having such a journal is an interesting goal,
but not a primary one. More important is to define the institutional
and administrative framework for such an international group. For
example the legal basis on European law has to be clarified.
Addition information: Pr Martenet, who previously had worked at
the University of Zurich/Switzerland, and who also joined the meeting
for some time, later spoke to Pr Zierhut, stated that she would
like to participate in the project of the journal, by offering to
translate an original English paper into German and French. The
project of an international journal could be one of the most important
one for the coming group.
International Fundraising?
Pr Zierhut invites everyone to find new ideas for
fundraising. For the DUAG, he reports about plans incorporating
Art. He is in contact to a director of a modern art museum who would
support the following project: he is in contact to approximately 10-15
artists who would give art (like graphics, pictures, photos) to the
DUAG for selling. From this money 50% would go back to the artists,
50% for the DUAG. At the moment the DUAG does not have the money for
the print of a catalogue (about 12.000€). It seems that such a
project is too difficult for a national group alone, but with the
distribution of such a catalogue in various countries this could be
much easier.
Structure of an International Website?
It seems after this discussion that structuring an
international/European website could be the first and most important
thing for the coming group.
Pr Zierhut proposes that an international website is designed. Its
content should be agreed by all national groups and would be
translated by these groups in different languages. It could have a
public part of 5 to 10 pages that explain what is uveitis, and a
private part, for members, composed of 100 to 130 chapters
describing all types of uveitis, including all medical litterature
that has been written in the past 10 years.
Mr Pecquet recommends to be extremely cautious to preserve the
anonymity of the people that log in these member areas (identification
shouldn't involve an explicit international databases of members) and
recalls that French laws on privacy and medical secret are extremely
strict.
Pr Rao kindly proposes the help of the IUSG to produce medical
information for patients.
Several patient groups representatives emphasize that they would like
to observe the medical and scientific discussions and, therefore, see
several viewpoints on the website, rather than the opinion of only one
particular medical team.
Dr Edelsten agrees that, since people get confused by the
differences between the recommandations of national boards of
ophthalmologists, local ophthalmologists and what they can find on the
Internet, some information must be released about these different
points of view.
Mr Hibbert suggests that this site would need to be frequently
updated since patients are always looking for news on research
activity (e.g. on Interferon A).
In summary, there was a lot of support for a good website. The
discussion focused around the points: common against private part,
taking care of data protection. M. Nahm tells that, to his opinion,
the maintenance of the website will be the main problem of an
international project.
Having a list of uveitis specialists?
Pr Zierhut asks the group representatives if they have a list of
uveitis specialists. People agree on the fact that, on the one hand,
it provides useful information for patients but, on the other hand, it
can be problematic to recommand "good" ophthalmologists, as far as
ethics is concerned.
To solve this dilemma, Pr Zierhut reports how this was solved
by the DUAG. This organisation has sent a questionnaire to all
university and larger clinics with asking for help. They told they
plan an information page on the DUAG website regarding special services for
uveitis-patients, and they ask these clinics for cooperation. These
questions are e.g:
- "How many patients with uveitis do you have?";
- "Is there a special day for uveitis patients in you department?"
- "Is there a specialist of cataract surgery on people suffering of uveitis?"
and to publish the list on the website, pointing out that this is a
list which can be changed all the times.
Having an group working on drugs?
Pr Zierhut reminds the group about the influence e.g. the
AIDS group in America has regarding the licence of new drugs. Because
uveitis is a disease which is called rare by pharmaceutical companies,
they are not willing to support good studies for licening such new
drugs. For disorders like uveitis there exist good laws allowing drugs
for rarer disorders to get licenced easier (orphan drugs). He points
out an important role for an European group for this. Therefore such a
group would need specialists in European law, drug release,...
Connexion with National Websites?
Everybody agrees that some national websites would still be
required since drugs and treatment recommandations might differ from a
place to one another.
Mr Hibbert suggests a clickable map of Europe on the
international site to find easily the appropriate local site.
Pr Talin Barisani suggests chatrooms. Everybody agrees on the
fact it is an excellent thing for the patients (DUAG has one,
Inflam'oeil might have one soon, UIG doesn't have one but there is a
UK chatroom on the site of the Massachusset Eye and Ear
Infirmary). These chatrooms should be in the native language of
the patient. Mr Hibbert recommands a monitoring of these
chatrooms.
Mr Pecquet mentions that national websites could organize on-line
meetings with uveitis specialists, as it is done, for glaucoma, at
Wills Eye Hospital, Philadelphia, PA, USA. (a specialist of glaucoma
answers patient's questions every Wednesday, from 8:30 p.m. to 9:30
p.m. at Wills
Glaucoma Chat Room). The logs of the discussions could be
translated in different languages and archived for future visitors.
Date of next meeting
The meeting ends at 19:00 and each participant is invited to think
with his group, during the next few months, about the goals a European
uveitis patient interest group should have. These goals and the
corresponding strategies to reach them, will be discussed at:
Meanwhile, participants will open the discussion with all existing
organizations potentially involved (ophthalmology boards, other patient
interest groups,...) and to see how other patient groups (arthritis?
glaucoma?...) are organized, at international level.
Some participants to the meeting (1/2).
Some participants to the meeting (2/2).
