Patient involvement across Europe

On the 21st of May the Eurobarometer qualitative survey was published, assessing the involvement and relationship between patients and health care professionals in 15 European countries.

What is patient involvement? One of the results of the study was that both patients and health staff are not aware what the concept means:

For both practitioners and patients it was often simply equated with medical compliance and following doctors’ orders (Eurobarometer, 2012).

But doesn’t patient involvement symbolise an active dialogue between patients and health care professionals and an open form of communication and the exchange of information and feedback from both sides?

The Eurobarometer survey found that choice was one key aspect of patient involvement for some patients, being able to change doctors and being aware of alternate treatments. From a practitioners point of view the benefits of ‘patient involvement” as having more motivated and engaged patients, with increased understanding.

So what are the benefits of patient involvement and what can be done to improve it? The active involvement of patients and an open communication can lead to better diagnosis and treatment options, when e.g. symptoms, side effects or lifestyle factors are discussed between the patient and physician, thus benefiting both. Patient involvement also indicates the monitoring of symptoms, side and/or treatment effects, which is already done by many chronic disease patients e.g. having diabetes. The internet also contributed to increasing patient involvement within the last ten years, since information about symptoms, potential diagnosis and treatment options are searched and presented to the doctor for discussion.

The wish to be involved as an individual varies between the age groups patients with a higher level of education, patients with chronic conditions, and younger or middle-aged patients wanted (and often expected) more involvement, as discovered in the Eurobarometer survey.

One example of patient involvement is the TEDx of Lucien Engelen at this year’s conference on Future of Health, 2nd April 2012 in Maastricht. Lucien talks about his initiative, incorporating patients in health conferences, to involve and empower them. In his talk he also introduces Jip Keijzer, who talks about his journey of battling cancer and the AYA platform of the Radboud Hospital in Nijmegen, bringing patients and doctors together. The doctor mostly sticks to the scientific facts but for the patient having a disease and being treated, so much more plays a role and has impact on his well being.

Involving and empowering patients benefits all involved parties and the society as a whole.

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Resolution passed to prevent a new PIP breast implant scandal

On Wednesday 25th of April, Members of Parliament (MEP) unanimously voted in favor of a resolution, tackling the recent PIP breast implant scandal. Members of the Environment and Public Health Committee call for the implementation of a breast implant register, stricter checks, product traceability, and a pre-market authorisation system. Furthermore, they stressed that converting EU legislation into national laws failed to avoid the PIP defective breast implants health fraud.

400,000 PIP implants by the French manufacturer, Poly Implant Prothèse (PIP)  were sold worldwide, most of them in Germany, France and the UK, the number of harmed women is however still unknown.

This case clearly indicates the failing of implementation and translation of EU policies on both EU and national level. Compliance, traceability, coordination and surveillance of medical devices have to be improved, to secure health status of EU citizens. In addition, an EU data base of medical devices that are on the market, registration of economic operations, vigilance and market surveillance; clinical investigations, notified bodies and EC certificates issued, say MEPs.

According to MEPs: patients’ associations, patient groups and health care professionals must be encouraged to report all adverse events and harmful effects of these devices without being hampered by a great deal of red tape.

Patient’s awareness of risks and access to health information also need to be improved. Furthermore, medical professionals should improve communication towards their patients about potential health hazards.

Let’s wait and see what measurements will be introduced and implemented on both EU and national level to secure the use of medical devices for patients.

5th Rare Disease Day

 

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Today is the fifth annual rare disease day coordinated by EURORDIS with the slogan:

“Rare but strong together”.

Hundreds of organisations from more than 40 countries worldwide are organising events today to give rare disease patients a voice. Did you know that in Europe alone 30 million people suffer from one of the 6000-8000 rare diseases? Some diseases only affect a small proportion of people, others up to 245,000. 80% of rare diseases have genetic origins while others are the result of infections, allergies and environmental causes. 50% of the rare diseases patients are children. Patients often perceive a wrong diagnosis, followed by a wrong treatment. Some rare diseases have common symptoms, such as weakness, anaemia, pain, vision problems, dizziness or coughing, which can be indicators for multiple diseases. Some rare diseases are so rare that they can only be diagnosed by a geneticist.

All patients face similar difficulties, due to the lacking scientific knowledge, diagnosis are often delayed and treatment options are not always available. Lack of information, social consequences, high costs of limited available drugs and care, as well as isolation are other problems which have to be faced by the patients and their families.

Solidarity” is the theme of the 5th rare disease day. It focuses on the importance and the need for collaboration and mutual support in the field of rare diseases.

Raise awareness, invest into research, increase health care access, treatment options and reduce health inequalities and create a better world for rare disease patients!

Education is crucial to reduce antimicrobial resistance (AMR)

On the eve of the European Antibiotic Awareness Day an action plan has been launched. This five year action plan is comprehensive and was presented by Commssioner for Health and Consumers John Dalli, as well as Commissioner  for DG Research & Innovation Maire Geoghegan Quinn and Dr Marc Sprenger, Director of the European Centre for Disease Prevention and Control (ECDC) in a press conference today.
But just to understand what we are talking about. Why do we have to be aware of antibiotics? Antibiotics were invented a lot of years ago and have saved millions of lives since then and are indispensable in medicine. But over the years antibiotics are easier to produce and also less expensive and are prescribed rather rashly. The outcome is that bacteria become resistant to antibiotics and these then do not help to combat the illness. These resistant bacteria can be transferred from animals to humans via the food chain. The resistance has manifested itself in hospital acquired infections as for example: respiratory tract infections, diarrhoeal diseases etc. This again results to an incredible number of deaths per year. 25,000 people per year.

So there is more than one good reason to have an Awareness Day dedicated to this problem and also for an action plan. But also read some patient stories here:  http://ecdc.europa.eu/en/eaad/Pages/Patient-Stories-Story.aspx

There are twelve concrete actions and several key actions:
1.    Antibiotics should be used appropriately in animals and humans
2.    preventing microbial infections
3.    developing effective antimicrobials or alternatives to cure diseases
4.    cooperation between partners internationally
5.    improving monitoring
6.    further research and innovation
7.    and education communication and training

In the press conference earlier today: The Commissioner for Research and Innovation has agreed to support this action plan with further research in this field and Commissioner Dalli stressed the importance of education. Educating health professionals, industries working with animal feed and consumers is crucial to reduce antimicrobial resistance in the future.

So please spread awareness about this very crucial public health issue!
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Rare diseases are not a marginal problem

Rare diseases are diseases with a particularly low prevalence; the European Union considers diseases to be rare when they affect not more than 5 per 10 000 persons in the European Union. Rare diseases maybe rare but still millions of citizens in Europe are affected and with that their families, friends and carers, too. In Europe there are only few experts on a rare disease and that makes it hard to find these experts and therefore to help the suffering patients. So there are several essentials which have to be improved in Europe. Recognition and visibility of rare diseases is a priority so that knowledge which is there can be disseminated regardless of any borders. Also it is important that centres of expertise are linked. A very useful tool to gain information about centres of expertise regarding rare diseases and orphan drugs is: ORPHANET, a reference portal on rare diseases and orphan drugs. It is led by a European consortium of around 40 countries and can be used in 6 European languages. The aim is to help improve the diagnosis, care and treatment of patients with rare diseases.
And one of their guiding principles is that rare diseases are rare, but rare diseases patients are numerous!