House of Cancer Self-Help in Bonn

I learned from the latest HSCNews Bulletin that Eight German patient organisations that specialise in cancers of various types have decided upon a new way to work together. Realising that really effective networking demands quite a lot of contact they have now offices in the same building in Bonn creating a House of Cancer Self-Help. This way they can “encouraging each other in work; coming together for the preservation and improvement of the quality of medical and psycho-social care; developing common approaches to common concerns (and to representing them jointly in public); and working together to strengthen the ability of patients to self-manage their conditions.” The House of Cancer Self-Help will also run four patient conferences a year in Germany and will work to ensure “that the patients who are attending the conferences have sufficient time to question the expert speakers”. More information can be found here.

It is a winning concept – in Sweden a lot of the patient associations share a couple of corridors in the same building in Stockholm where also the main umbrella association have its head quarter. I would guess that over the year this have meant quite a lot with regards to information exchange and knowledge building for example for the smaller organizations with maybe only one person working for them.

Social networking seems to still need to be also taking place in real life or as some now say: outside of keyboard. Even if new media certainly enables and helps!

Pfizer no 1 on patient information 2nd year in a row

PatientView have conducted a global survey of 655 patient groups from 46 different countries on the topic of patient information. The findings where partly presented at the Patient Information by the Health Consumer Powerhouse seminar hosted in the European Parliament by Christofer Fjellner last week.

One of the questions asked where: How well do you believe the following companies performed in 2009 in their ability to provide information to patient groups? It turns out that Pfizer takes the lead for the second year in a row. On second place comes AstraZeneca (+6) and on third place Novartis (-1). The ranking do seem to partly correlate with how well known the companies are and its therefor maybe not surprising that out of 15 companies on shared 13th place comes the rather unknown Amgen and Boehringer-Ingelheim. The full list can be found in Alex Wykes presentation here.

A little self promotion

German Aerzte Zeitung have written about the Swedish Presidency and interviewed me.

The question I hope Dalli gets at the EP hearing

The most important change in EU Health care policies have not been done by the Council or the Parliament but as I concluded in my previous post about the Swedish Presidency they didn’t really impact future healthcare policy during their last 6 month of power. Instead if anyone in the future will say that in second half of 2009 this happened and it really changed healthcare policy it will not be something that the Presidency did but what Barroso did when he moved several responsibilities from DG Industry to DG Sanco and appointed Dalli as health commissioner. The appointment of someone with a background in finance etc could show to be very important for the development of European healthcare policy.

This week Dalli will be heard/questioned in the EP. The answers will give us the first indication towards what direction the EU commission now will take in the area of public health. Ie if the changes will be more than formalities.

I'm quite sure most of the questions will be on the Directive for Patients Rights at cross border care but that also the Patient Information issue will be raised. One or two disease areas will most likely get their 15 min in the spotlight. Business as usual for the main part.

But what I hope someone will ask is:

- Will DG Sanco now take a real responsibility for the facilitation of a sustainable European health sector with empowered healthcare consumers trusted to really take their health into their own hands - instead of merely in all healthcare policy issues take the position that patients needs to be safeguarded and taken care off.

But that will most likely not happen. Not yet. Maybe next time. When the effects of the organisational changes starts to set in.

What did the Swedish Presidency do for your future health?

I was asked to comment on the Swedish Presidency by a journalist recently and after having given it some thought, looked at some of the material released this last 6 month and talked to a couple of people I must come to the conclusion that there have been no major achievements impacting the life of European healthcare consumers and professionals. But that we might see some changes anyway.

So why didn’t the Swedish Presidency rock the boat more? I see 2 major reasons for this besides the Swedes being Swedes – more about this in my LÁnglophone column from early autumn.

1. The first reason being structural: We had a rather weak EU commission since it was to be exchanged, for long waiting to be relieved. Also it didn’t help that the presidency in waiting (Spain) was working quite active and successfully against several of the Swedish key issues. Not so surprising given that the ministers do come from very different political backgrounds. We saw this division for example in the case of the Directive for Patient Rights. More concretely this meant that the Spaniards managed to gather a blocking minority partly by promising better deals during their presidency. I.e. that under their presidency governments would not have to hand over so much power to the patients.

2. The second reason is the Swine Flu - Now I think media and politicians alike over reacted – 1. – but no matter what you think about the focus on this issue one cannot deny that quite a lot of time and efforts by key healthcare people have been spent on this unexpected situation, time and focus that otherwise would have been spent on other issues. But what I can see the efforts around the Swine Flu showed that when needed the international community really can act fast and united. If the learning’s from this is used well by those that would like to see more international co-operation on health issues we might see surprising effects in other areas as well.

In one area where for example I do not think Industry expected or even still really understands what happened with is the info issue, i.e. the EU commissions' proposal for Information to Patients – a part of the Pharmaceutical package. It seems like still some analysts believe that if only industry says ok to pre-vetting then the issue is solved. It’s because they have not understood that the Swedes themselves have put the very controversial issue on hold not because they agree with countries like Spain or France who thinks that the EU Commission proposal is to liberal – Quite the opposite. The issue the Swedes have with the proposal is that their constitution on freedom of speech doesn’t allow for censorship – governmental pre-vetting of information. If Industry thinks this is ok sort of doesn’t help:) Makes me happy that my government stands up for principles.

Still, in some areas there have been achievements: On MRSA for example where the commission now has been asked to come forward with a proposal for new incentives for development of new antibiotics by 2012. Small steps have also been taken concerning organ donation and alcohol policies etc. And on organ donation Spain will probably do all they can to find a solution. Spain is best in the class and will probably take the opportunity to shine in this field.

Another achievement that might be considered a big step forward for public health is the council recommendation to the Member States to introduce smoking restrictions in public places. But I think this was a given and something they just could not loose. I firmly believe that smoking will be banned altogether. It just doesn’t make sense to let people destroy their health and our common healthcare budgets by allowing smoking. Would we have an insurance system where the fees could be adapted to smoking habits or they paid themselves for their healthcare I think they should be free to kill themselves? But as long as I pay…

A small issue but with high importance is that the Swedes managed to get the council to support the European Court of Auditors very critical report on DG Sanco's work with the Public Health Program 2003-2007. This is important for all future efforts on EU level. Targets for all efforts needs to be set. There will have to be focus. We can already see the effects in for example the Work program published by DG Sanco in December. In short the budget is tighter, the focus clearer and the demands on output orientation higher. And warnings are raised that last year already only 20% of the applications where granted – this year it will be even fewer. Having previously seen some excellent but also some very, very basic work being funded in all possible and impossible areas I think this is great step forward.

On a final note most interesting is maybe that now finally the Swedes are free to say what they want. For quite some time also before their presidency they have been diplomatic in the hope that this would enable them being good chairmen. Now they will have no such restrictions and I would hope this means they can finally really take a stance for patient’s rights to choose etc. This is areas where the current government back home in Sweden has been very active. I would think the Spaniards will have quite a match with the Swedes since they do have quite different views on who should be in power in healthcare. Sometimes it's said that health issues we can all agree upon but when one looks at the Swedish and Spanish health policies it becomes quite obvious that one country thinks that the patients are taxpayers and should be in charge and that the other country believe that it’s the role of the government to ensure best possible care for all.