Tuberculosis gets some attention

The European Commission, the European Centre for Disease Prevention and Control and the World Health Organisation's Regional Office for Europe meet in Luxembourg today and tomorrow to discuss how to prevent and control tuberculosis.

Good so, as pointed out in an earlier post on the blog, its more urgent to deal with tuberculosis then swine flu and other media hyped diseases. In 2007 there was 85 000 reported cases in the 27 EU and EFTA/EEA countries. DG Sanco has calculated that this represents nearly 55 tuberculosis cases reported every hour and an increase of 55 000 cases in comparison with 2006! And that was 2 years ago. Compare that with the Swine Flu numbers for 2009 – according to the ECDC just over 6000 cases in the EU. And then we have not started on the severness of the 2 different diseases...

At the meeting they will give out an European award to a Non Governmental Organisation to highlight the important work carried out to fight tuberculosis. I think Hans Rosling and his Gapminder should be given the award.

More info from the meeting will be published here

Quality indicators – enabling patients to choose healthcare. US and Hungary

2 different quality comparisons systems have been updated this summer. One from the NHQR enables US citizens to compare healthcare outcomes in the various states.The other enables Hungarians to compare providers. Usually US is quite good at all kind of quality measurements but the Hungarian example shows that they have to make a substantial effort if they are going to keep up. The US data do have the benefit that it’s in English making it easier for me to critique it but I must say that I think it would benefit from some efforts on making the user friendliness.

The Hungarian Quality Indicator System 2009 to be found on www.ebf.hu is a database covering 675 indicators. The total number of data is 120,000. Patients can compare 3 providers at a time.

The indicators are grouped into patient rights, patient safety, waiting list management, supplementary and hotel services, quality management, employee policies, and professional fields like obstetrics, cardiology, emergency health care, breast oncology, in vitro fertilisation and prenatal care.

Given that all individuals have different preferences I really like that individual weighs can be entered into the website!

Some of the findings I find interesting:

A good sign for the future is that patients are provided with information brochures on patient rights in 41% of the hospitals, and the half of the institutions makes the information available on their websites.

Good is that 12% of the consultation time is after the office hours (in 2008: 10%), providing easier access for working population.

But they still have some way to go: For example ultrasound diagnostics are available only in the 90% of the prenatal care providers.

Dr. Zsombor Kovacsy President of the EBF made a presentation on the Hungarian work at a conference on quality measurements that I arranged earlier this year in Prague. His and the other speakers presentation can be found here.

EESC and the Pharmaceutical Package

The European Economic and Social Committee (EESC) had a hearing on “Pharmaceuticals” on the 20th of April. The purpose was to ensure a good discussion on the 4 preliminary opinions with regards to the Pharmaceutical package. Those four opinions were then adopted at their plenary session on 10 and 11 June 2009 and have today been published on the EESC website. I didn’t attend their plenary session but the hearing I did manage to attend – I did find it quite interesting with some new perspectives on pharmaceutical information (on the difference between info and advertising) and distribution (internet sales) being highlighted.

At the hearing I found Mr Michel Nakache, Chairman of the Health Communication Council of the European Association of Communications Agencies (EACA) especially refreshing. He stated that he could not understand when people claimed it hard to legally differentiate between information and advertising, that his professionals could do quite easily since it is their profession and that maybe they should have been asked for this explanation earlier. Now I might have misunderstood him since in the report from the event it only says that Mr Nakache “also welcomed the pharmaceutical package. On information to patients he stressed the need to clearly differentiate advertising and non-promotional information.”

All too often good discussions in Brussels end up in quite PC standpoints or summaries. But not always. In the EESC pressrelease one can find that the plenary session “called for free movement of medicines and for the completion of a Single Market in the pharmaceuticals sector”. Must mean they are not too happy with the ECJ decision on the Italian market regulation with regards to pharmacies. The final documents and more can be found here.

How to demonstrate to policy makers that medical devices give value for money in healthcare

A couple of years back the European Health Technology Institute for Socio-Economic Research was initiated. Via research pooling and sharing of knowledge between 3 very well established universities the aim is to increase knowledge about medical technology enabling better healthcare decision. (The 4th partner is Eucomed – the trade association for the medical device industry.)

Now the 3 research partners have presented some preliminary findings on The Socio-Economic Value of Medical Devices. If you reed their press release you learn that:

• In the UK the London School of Economics find that medical technology gives good value for money delivering lower rates of mortality and major adverse events, and shorter hospital stays in cardiovascular disease treatments
• In German the Berlin University of Technology research finds after having studied real world data from the German Sickness Funds (i.e. instead of abstract modelling based on assumed figures) that innovations in stenting yields considerable improvements in lives saved and costs avoided.
• The Bocconi University data highlights importance of non-financial drivers (i.e. instead the experts do drive innovation based on their experience exchange) in reimbursement context by looking at the introduction of Drug Eluting Stents.

The findings are interesting but I must say that I do not really understand from this summary how they are pooling and sharing knowledge in their research? But its early jet – 2 years is hardly a long time when it comes to mapping out, analysing and understanding healthcare organisation. Maybe you need this early findings first before you can start compare findings. And for me the most interesting is to see if they can take the findings to the next step – i.e. how the group will work to ensure that their findings can be and are used by the policy makers. This is said to be part of their aim.

My advice would be that if they will be able to reach the decision makers the next time they send out an interesting press release they make sure that those interested actually can find more indebt material on the topic on the organisations website.

Italian or Norweigian pharmacy model best for the citizens?

Italian MEP Stefano Zappalà claims, with referral to the ECJ decision, that "The Italian pharmacy model has also won in Europe". Not sure what he means with "also". Clear is that he is happy that ECJ "has put a halt to the push for the liberalisation of pharmacies by the European Commission in recent years." He continues: "The Italian pharmacy system, which is also the continental system, has been designed to protect citizens and to ensure their health is not endangered. " Now one of the issues with the Italian system is that only pharmacists are allowed to own pharmacies.

As reported earlier on this blog the European Commission have started infringement processes against member states with systems restricting ownerships in various ways. The lobby against liberalization have been fierce and Zappala is only one example of those fighting hard to avoid modernization of the sector. Whatever their arguments we know it can be done differently.

Kai Finsnes from the Norwegian Pharmacy Association recently gave a presentation in Athens of how the pharmaceutical distribution system can be improved for the citizens. He described the results of the Norwegian pharmacy deregulation in 2001. Before 2001 the government decided when and where new pharmacies were to be established. Only pharmacists were allowed to own pharmacies and they could not have more than one. Pretty much the system Zappala defends. Between 1991 and 2000 there were 3-11 new pharmacies established each year. With the introduction of free establishment (no need to be a master of pharmacy to own a pharmacy and legal persons may own pharmacies in combination with no limitation of the number of pharmacies that can be owned) in 2001 Norway have had 15-61 new pharmacies opened each year. So there are fewer inhabitants per pharmacy and an increased consumer focus. Pharmacies are thus easier accessible for every Norwegian.

Maybe even more important to explain to the defenders of the old time systems is that the competence in pharmacies have actually increased despite all the warnings about what happens when ownership etc are deregulated! Take a look at the statistics below.

So if quality is better and access is better, what do the citizens wants? The Swedish Co-operative Union (KF) (uniting the 48 regional consumer co-operative societies in Sweden, with over 3 million individual members) in a survey of their clients/members found that 90% states that they want to have pharmacy services in their organizations stores.

So whose interest was Zappala defending in his election campaign? If it is the citizens, I would say that he is very off the target.

21 UK time on BBC 2 tonight - on the value of life in healthcare budgets

Already the 7th it was possible to read Adam Wisharts excellent article The unbearable cost of living. Tonight on BBC you can see the documentary the article is based on. It is dealing with the issue of what is a life worth and how that figure is set and managed within the healthcare system. The article is seriously good. So stop reading this and switch on the TV.

The work on patient rights

PatientView is a research-and-publishing organization that surveys the opinions of patients and health advocacy groups. In their Health and Social Campaigners' News International, you can read about the activities of health campaigners worldwide. Its usually a fantastic source of knowledge about healthcare issues. In the last issue the efforts by the Active Citizenship Network (ACN) leading up to the pan European celebration of the Patient Rights Day on April 18th and the European Commission and the current presidency trio campaign Europe of the Patients is described. ACN, originating from the Italian civic group Cittadinanzattiva, is campaigning for the legal basis of patients’ rights to be accepted as EU law and embraces 14 rights—called the European Charter of Patients’ Rights.

An important step towards this is as discussed in the magazine the Patient Rights at cross border care directive. For the first time the European Union is codifying the right to choose provider no matter borders etc. A choice that is not obvious in some countries that now will be given to the patients without borders. The costs covered by insurer and thus the purchase power patients can bring will still be the one stipulated by the healthcare system in their home country.

This makes the “correction” sent by ACN to Patient View and distributed by them to the subscribers very strange. In this correction it is said that their original aim with supporting this directive was to “guarantee that the rights are not only for the people that travel but all European citizens. This is an important aspect that is not included in the Directive on Cross border care and a reason the socialist are sustained from voting.” Now this must mean they have not read the directive and been seriously fooled by the socialist group.

(Now I will repete myself a bit - you who read my previous postings on this issue can jump to the end of this blog post directly.) The directive is dealing with those travelling for care – tourists and business travelers catching a cold or a more serious illness while travelling is already covered by other regulations. This directive aims to give patients the right to seek care cross border among others if they have to wait too long for treatment in their own country or if the treatment is not offered in their particular country. It does also put in place a framework for how much money one can bring – basically a care voucher system – and how to deal with quality and insurance issues etc. The socialist group has been fighting the directive all the way from autumn 2007 when the chairman of European Socialists Poul Nyrup Rasmussen wrote to all commissioners with a socialist background asking them to stop the directive on the grounds that it would make healthcare part of the common market. Later objections have been - also from quite many conservative governments - that this would mean that EU would decide on how healthcare is organized. This is not due to the directive not being for only those travelling but due the difference in beliefs of who should be in power in the healthcare system. The citizen or the government.

This is exemplified in a couple of issues. The first being that an EU law would give patients the right to go abroad and choose providers including private ones, which you do not have in all countries today. The second being the fears that the law could undermine the gatekeeper function. In the EP the socialists went so far that they tried to postpone the vote whishing for the new parliament to be a “better” one. In the end they was forced to negotiations when they was told that there would be a vote on the issue either with their co-operation or not. When they then had several of their demands meet they still did not vote for the final proposal. In the final vote, they abstained. So now a proposal have been voted upon that are quite weakened on for example the rights for patients to go abroad without prior authorization and the socialists have lost even more power in the newly elected Parliament.

However, the debate on this is still very low key – probably partly because organizations like ACN have bought the PSE description and defends the election talk from the PSE group.

But beside this the ACN Patient Charter is very good and the campaign for getting Patient Rights recognized by the European Union now running on its eight-year can see some signs that the goal is getting closer. There is quite a lot of support in the European Parliament for the idea – the liberal group has launched their own campaign on the issue. More and more countries do have Patient Rights legislations. However, I would like to end by pointing out that maybe it would be better if we stopped talking about patient and instead used people with HIV, people with rheumatism etc. If healthcare could be looked upon as normal services and products we would have rights, consumer rights, already now.

PGEU in Stockholm to develope the core values for the next 50 years

The Pharmaceutical Group of the European Union (PGEU) is the European association for pharmacists. Right now in Stockholm their annual meeting take place under the theme:
"The Next Fifty Years, Developing Our Core Values for a Changing World".

I hope the next 50 years will be about modernisation and meeting consumer demands but Im not convinced. Take a look at this programme for guests and accompanying persons - does it seem like its developed for the members of an forward looking organisation? First day they think their guests and accompanying persons should be bussed to the most posh store in town NK, then next day a bit for history with the Vasa museum to be followed by a day at the royal castle. The congress program is being put together by the Swedish state monopoly company Apoteket. I must admit I'm suspicious by any organisations that have this type of programs.

12 people die every day waiting for organs

56 000 patients are waiting for an organ transplant in Europe. 12 people die every day while waiting for transplantation according to the European Commission. One of those that were waiting, my children’s cousin, got his heart last week. A little boy who luckily was not one of those that died while waiting. Others just run out of time because there is not organs enough.

A European Commission proposal for a directive is on the table and the Spanish Presidency who takes over after Sweden 1 of January 2010 will prioritize this issue. Spain has reason to be proud over their work in this field having managed to increase the rate of transplantations quite substantially by ensuring a good organization of the healthcare system with regard to this issue. The Commission has also put forward a 10 points action plan. Most of the points are purely organizational for the healthcare system and there is a lot to be done to ensure the well needed maximum efficiency from staff and administration.

But out of these 10 no 4 is being a little different since it says, “improve the knowledge and communication skills of health professionals and patient support groups on organ transplantation.” And this is really key to actually get the organs needed. In some countries, the government does assume that diseased are willing to donate unless they have stated otherwise but it is not the general rule. It is just not enough with the best possible organization of healthcare to ensure enough transplants – people has to be willing to donate as well! Therefore, people need to be recruited to the donation registers. The issue is how to do this.

The obvious way is to put a face on those 56 000 waiting. Daniel Westerling who is soon to be married to the crown princess of Sweden has recently undergone an acute kidney transplantation. The media attention around his operation led to 5 times as many people as normal signing up for the Swedish transplantation registry. Similar increases occur every time there is real media attention around transplantations. The Swedish record in new registrations of donors is from 2006 when an 8 year old girl died in the queue for a new heart. If 12 people die every day while waiting for a new organ, why do we learn about so few of them? And why do people have to die before we register?

If you want to find out how to register in your country this link summary from Scandiatransplant is excellent.

Financial Incentives got the administrators to get their act togheter

Last year 130 000 patients where queuing for treatments in Sweden. The government at that point decided that the counties that manage to cut their queues as a reward will share a reward of approx 90 million Euros. Already after 5 months the number of patients waiting too long (now I would not necessarily agree on their definition of too long but anyway) for treatments has been cut in half. Right now 16 out of 21 counties are qualified to be in on the slit of the money – the deadline is the 30th of November. The incentives are combined with educational and informational efforts enabling patients to better know their rights as well as to find a healthcare provider with shorter waiting times.

Rare Diseases EU Communication decision

The EU communication on rare diseases was adopted today at the Council of Health Ministers. The decision basically means that the countries have agreed to adopt national plans or strategies for rare diseases before the end of 2013. The aim is also that research should be promoted and a better infrastructure for rare diseases treatments should be created. Identifying Centres of Expertise will be key in this process.

What I find the most interesting is the decision to”organise healthcare pathways for patients”. Also cross border if needed. It’s a modern approach that will be interesting to see what it results in. For more info check the EU Commission website.

What the EU Health Ministers will discuss next week

European health ministers will meet on Tuesday in Luxemburg to decide on a range of proposals from the Commission. It is quite a wide range of issues from rare diseases over patient safety including the prevention and control of healthcare associated infections to the so called “pharmaceutical package”.

The most controversial part of the ‘pharmaceutical package’ seems to be patient information. Most people I talked to assumed that the proposal is politically dead since lots of EU Member States don’t like it. The main reason the increased possibility for pharma companies to inform patients about their products. Other countries such as Sweden and Denmark have serious issues with the proposal due to their constitutional rights on freedom of speech as the proposal would demand a system where governments censor companies’ information. As a Swede I must say I find the proposal quite restrictive and don’t really understand what it is in the current Swedish system that the Commission thinks needs to be limited. On this topic, there was quite good presentation held by Per Manell, at conference organized by the European Commission and EPF, "The Pharmaceutical Forum – Delivering for Patients" about the Swedish pharma industry web site for information on pharmaceutical products. The presentation can be found here.

Another issue to be discussed is the Commission communication on organ donation. The proposal went through the European Parliament this spring and is not very controversial. I therefore find it a bit surprising to see that some Member Stateswant to specifically exclude organ donations from the proposal on patient rights at cross border care! The full proposal for patients is highly controversial starting from the first ECJ case in 1995, continued via the proposed service directive where MEPs excluded medical services in the end in 2006 until today when the Commission first postponed several times and then most recently with the PSE group in the parliament trying to obstruct a decision in the Parliament.

Given how long this issue has been discussed, it´s a surprise to find, in the material put forward by the Council to the EU Member States, the phrase: “Due to the lack of time, the WP did not examine this revised compromise in detail”....

One should have expected that after a compromise on the patients rights Directive was found in the European Parliament, the Council’s decision on the issue should be easier, but that is obviously not the case: First of all, a large number of EU Member States are still very much the whole idea of patients receiving treatment abroad.

Secondly, when one looks at the details one notices that they want to further strengthen the rights of national administrations to forbid travel for treatments Member States want to increase the obligation to seek “prior authorization (or rather “prior refusal”) and even to exclude certain treatments. Since the assessment is that the proposal as it stand right now in the council is not supported by the ECJ case law one of the issues to discuss on Tuesday is how to “tackle the legal uncertainty for patients and its negative impacts on providing cross-border healthcare that may arise? (e.g. by means of adopting new legislative proposals on the excluded types of healthcare?)” Very important question indeed!

Thirdly, quite a lot of Member States wish to exclude private providers from the scope of the Directive. Now there is not really any legal ground for this policy so the sitting Czech presidency wants to find a compromise where they Member States have the right to exclude providers only if it is on the basis of quality (i.e. exclude unsafe and low quality private providers). Would it be worthwhile to try to work with a solution enabling a system excluding those providers who do not meet some quality and safety standards? The answer is clearly Yes. That is fine. Obviously it is not so easy for some of the more dogmatic EU Member States (which prefer to keep healthcare only for public providers).

The second question raised by the Czech Presidency is what mechanism for other co-operations between EU Member States should be put in place. The MS have decided they do want more cooperation in other matters (eg e-health, health technology assessments, quality) – not that easy since they of course know very well that every new formal European co-operation is a step closer to a single European healthcare system. It is slow, it is painful but it is where we heading – the governments are already in agreement on the vision and basic values that should be guiding our healthcare systems. Now we are on to practicalities, starting with allowing patients freedom to seek care in the various countries and continuing with co-operation on general issues.

If you want any of the background material you would have to send me an email.

The EU Health Prize for Journalists an exceptionally bad idea.

Commissioner for Health, Androulla Vassiliou has in February as part of the "Europe for patients" campaign announced a prize for journalists. To win certain criteria should to be meet: “The jury will judge the articles in relation to the objectives of promoting Europe for Patients campaign. Therefore, preference will be given to those articles that particularly raise awareness of the issues of Europe for patients' campaign.”. So now journalists can write articles that supports the commissions ambitions and submit them in the hope of winning 5000 euros. That is not the way to foster a good critical and investigating press – its just a way for the commission to pay for PR. What European healthcare needs are more investigating and analytical healthcare journalism. Journalism that dare question if governments and providers are delivering according to claims. Journalists that patient can trust because they know that they write objective. Not journalist that help the EU institutions campaigning.

At least one healthminister supports patientsrights at cross border care

Here you find information about the upcoming ministerial meeting 6-7th of July in Jönköping including a video where the Swedish Minister of Health Göran Hägglund explains his aim with the meeting. His position on the issue of rights of patients to healthcare cross borders is good – wish more states would support his view. But most countries just do not want to allow for choice cross borders.

New EU communication on HIV/AIDS in September

The European Aids Treatment Group (EATG) had in late May their general assembly and elected a new board of Directors. EATG works a in a different way compared to most pan-european patient associations. It is a European network of nationally-based activists defending the treatment-related interests of people living with HIV and AIDS.

They have their work cut out for them since in September the EU Communication on combating HIV/AIDS in the EU and neighbourhood - strategy and second action plan (2010-2014) is supposed to be adopted after a consultation process now in July. More info on that work here. The Communication replaces the 2006-2009 one you find by clicking here.

I hope this can give some new attention to HIV. It is still a disease you die from - it just takes longer than before. And not that long if you live in one of the countries where HIV treatment is not a priority. But what countries that is I cannot tell you and that is because when the World Bank did a measuring and ranking of for example quality of treatments in various countries it in the end was not made public...

Wolfgang Philipp is the person to contact at DG Sanco. If you want to contact EATG Anna Zakowicz from Lithuania is the new Chair with Luis Mendao from Portugal as vice Chair then Thandi Haruperi from the UK is Secretary, Stefan Stojanovic from Macedonia is Treasurer and Alain Volny Anne from France is Director. Acting executive director is Smiljka de Lussigny.