Working together to improve cancer outcomes in Europe
Report of the ‘Patient Forum’ of the ECCO 14 conference, September 23-24 2007, Barcelona.
ECCO, the European Cancer Organisation, organises every 2 years a multidisciplinary congress. EMP was represented by Greetje Goossens, Ilse Hein, Joao Salazar and Lia van Ginneken.
The goal of the patient forum, as part of the conference, was to create a platform for health professionals and patient advocates.
The following topics were discussed:
1. Advances in cancer treatment: a look to the future.
Treatment of cancer will be more and more determined by the genes that are active rather than by the type of cancer. The diagnostic techniques are become more an more sophisticated, and treatment more precise/focussed. More specialists are involved in the treatment, like the radio therapist. The role of the surgeon has changed a lot over the years, he/she is less involved in taking away the tumor than in taking precise biopsies. The plastic surgeon has a much bigger role.
2. Improving patient participation in cancer clinical trials.
It was indicated that patient are hardly involved in clinical trials and in order to improve research, more participation of patients is essential. Particularly the involvement of patients in the trial design was underlined.
In order to be able to play a partner role in this, patients need to be better informed and educated on these issues.
Suggestions for patient involvement: take part in ethical committees of trials;
set up a cancer registration system which is understandable for patients; stimulate quality control of trials; only take part in registered trials; guarantee informed consents; make sure results of trials are published (this only happens in 40% of the trials); help in getting funds for the trials.
3. Meeting cancer patients’ informational needs: rising to the challenge.
Patient information on cancer is chaotic. ‘Too much from too many’.
There is a lack of valid and understandable information.
Some examples were given on how to structure/streamline information for patients. E.g. a CD-Rom, containing information for patients on various aspects an the hospital procedures of a Stamcel transplantation. The patient can take it home and look at it when and where it is suitable.
The need on information is largest on the disease itself and the treatment. Patient who are actively involved in their treatment process, want more information than patients who are not. It is proven that the patient with more information can handle his/her illness better.
The most common sources of information are the doctor, family and friends. Information from the web-site and information from self help groups are least used.
More study is needed to determine which is the best way to inform patients.
4. ESO observatory: cancer on the internet.
The internet gives endless possibilities for exchanging information. However, the quality varies a lot. The EU sponsors at the moment several projects in order to developthis new type of educational system furher.
A patient centered support system has been developed in Scotland, communicating by internet and mobile phone.
In Spain a patient university on line has been started.
(www.universidadpacientes.org).
These virtual methods, however, will never replace the personal communication.
5. Getting on with life after a cancer experience: the good , the bad and the ugly.
Biggest obstacles are the lack of available medication and treatment. Lack of care, financial problems, lack of information and support and discrimination in treatment (in some areas patients are treated properly, in others patients cannot get the treatment they need). But there is hope for the future. Treatment is more and more focussed on the quality and extension of life.
Professionals were urged to spend more time on communication with the patient, to respect the knowledge and experience of the patient, to allow for second opinions and not to discourage the patient.
Psycho social aspects are more and more important now that cancer patient become more often chronic patients. The rights of the patients must be ensured.
6. Meeting the needs of cancer patient in a multicultural society.
A situation was described in one of the London suburbs (Tower Hamlets). Mainly immigrants from outside Europe live here.
Political policy determines the degree of care offered, and also to which extent the immigrant is supposed to integrate in his/her new community.
Different languages and illiteracy are the biggest problems.
The changing medical attitude to involve patients and their families more and more in their own treatment process is also a problem in the different cultures. The different attitude between first and second generation immigrants causes problems.
One way to diminish the gap is to train people of the different groups to become health professionals. But also this can cause problems, when their attitude towards health is very different from the UK system.
7. Taking action against cancer in Europe; can cancer control plans make a difference?
The development of ‘National Cancer Plans’ is essential in the battle against inequality in cancer treatment between the EU countries. Patient organisation can play a part in this.
Attention was paid to the cost of medication. Why do they need to be so expensive? 30% of the cost of development goes to the marketing, only 6 % to research!!
The closing panel discussion concentrated around the following question:
“Can we speak with one voice?”
It is important to take communal actions and to bring a communal message. Multidisciplinary co-operation on a national level but also on a European level is essential!
Nothing about us, without us.
On the whole it was a stimulating symposium. The importance of the role of the patient in the battle against cancer was strongly emphasised.
The organisation’s policy to reimburse part of the travel and hotel costs was excellent. This is the best way to get more patients involved in the future.
Lia van Ginneken
November 8, 2007