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Patient Rights in Europe
Do the European countries have legislation protecting patient rights? How is it enacted? What is the patient experience?
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BUZZWORD INNOVATION: The Patient Centricity “Fad” and the Token Patien By Paul Ivsin

I have written recently about the ascendency of “Patient Centricity” as this year’s top buzzword in the clinical trials industry. There is no doubt that it – and its companions, “patient engagement” and “patient voice” – have burst onto the scene heavily this year, supplanting our previous breathless excitement for Big Data and mHealth. So it seems fair to ask: is patient centricity a fad, or a real change in how we approach clinical trials? And if it’s a fad, does that matter?
......

So what do these large organizations do when confronted with a new fad? They can certainly attempt to ignore it, and hope that it goes away. But many times, the reaction is to acknowledge and support the trend in as symbolic and superficial a manner as possible. This enables the organization to appear to be adaptive and innovative without actually risking anything. (For a recent example, check out the Twitter feed from any big pharma company.) Real, structural change might bring a reward, but it also very clearly runs risks – rules may be broken, existing customers and stakeholders may be angered.


And that is quite likely the biggest barrier to advocates of patient-centered clinical trials today: not that they will be resisted, but that their message will be co-opted and their efforts shunted into high-visibility but low-impact initiatives. This enables the institutional gears to continue grinding in the same way, without the need for risky and unpleasant change.

Kathi Apostolidis's insight:

If the above article raises question about where the author stands: he is not a patient advocate. Paul Ivsin is a consultant, leading a patient recruitment organization for clinical trials in the US, i.e. selling services to pharma and research organizations.  

However, what he writes makes sense: in Europe too, patient centricity arrived and patient-centricity is used by many, in many contexts... It's time that patient advocates check thoroughly if claims of patient - centricity in research, clinical trials, EU funded projects, clinical practice is real and translates into organizational changes on how research, projects, clinical practice are conducted.

Your comments and sharing experiences might start a real not buzzword conversation... 

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A reform agenda for Europe's future

A reform agenda for Europe's future | Patient Rights in Europe | Scoop.it
The EU has to provide more added-value to the health of EU citizens, promoting preventive measures - in particular fostering healthy lifestyles and fighting for food safety and against food fraud. The financial and social burdens of non-communicable diseases like cancer have to be decreased through effective joint EU efforts, based on successful existing initiatives, like EPAAC, CANCON and Equity Action Joint Actions.
Kathi Apostolidis's insight:

'To Eυρωπαϊκό Λαϊκό Κόμμα στο Ευρωκοινοβούλιο δημοσίευσε τις προτεραιότητες του μεταξύ των οποίων η υγεία των Ευρωπαίων πολιτών. To EPP είναι το πρώτο κόμμα του Ευρ. Κοινοβουλίου που αναγνωρίζει τις επιπτώσεις του καρκίνου και τον θέτει στις προτεραιότητές του. 

" Το οικονομικό και κοινωνικό βάρος των μη μεταδιδόμενων ασθενειών όπως ο καρκίνος, θα πρέπει να μειωθούν με αποτελεσματικές προσπάθειες της Ε.Ε. που βασίζονται σε επιτυχείς υπάρχουσες πρωτοβουλίες  Kοινών Δράσεων όπως το EPAAC, CANCON και Equity Action."

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ASCO Guidelines Address Key Symptoms Affecting Cancer Survivors | Cancer Network

ASCO Guidelines Address Key Symptoms Affecting Cancer Survivors | Cancer Network | Patient Rights in Europe | Scoop.it

A cancer survivor is a broad term,  defined by the American Cancer Society (ACS) as any person diagnosed with cancer starting from the time of their diagnosis through the course of his or her life, but is mainly focused on the period of time after active cancer therapy ends.  ACS estimates that a total of 13.7 million Americans who have had a history of cancer were alive as of January 1, 2012. This population is projected to increase to 18 million (9.2 million women and 8.8 million men) by 2022.

 

……..

Key Guideline Recommendations

For anxiety and depression:

• All patients should be periodically evaluated for depression and anxiety symptoms using validated protocols.

• Treatment of patients with depression or anxiety should be tailored based on severity of symptoms and history of depression. Follow-up of patients is crucial, as many symptomatic patients are less likely to comply with referrals and treatments.

• Health care providers should be aware of their institutions’ resources for treatment of depression and anxiety and should have patients make use of supportive care services, including those that facilitate prevention and mitigation of symptoms.

For fatigue:

• Regular screening is highly recommended, starting at the time of diagnosis and continuing after completion of primary treatments, at least annually and using semi-quantitative or quantitative measures.

• Patients should be offered education and advice about managing fatigue following treatment. Maintaining adequate levels of physical activity are encouraged, particularly walking.

• Other non-drug treatments such as psychosocial interventions and mind-body interventions (yoga, acupuncture) are encouraged.

• Pharmacological interventions for post-treatment patients are not encouraged, as there is limited evidence that drugs are effective in reducing fatigue in those who have completed therapy and are currently disease-free.

For neuropathy:

• Duloxetine is recommended for treatment of chemotherapy-induced peripheral neuropathy (CIPN).

• No agents are recommended for prevention of CIPN during active chemotherapy treatment.

• No strong clinical evidence for benefits from other agents such as tricyclic antidepressants, gabapentin, and topical gels containing baclofen, amitriptyline HCL, and ketamine are seen, but they may be tried in certain patients.

Kathi Apostolidis's insight:

It remains to be seen how these new cancer survivorship guidelines will be received by the international oncology community and how they will contribute to relieve symptoms. ASCO has released its first ever guidelines for prevention and management of symptoms that affect many cancer survivors. ASCO published clinical practice guides for anxiety and depression, fatigue, and chemotherapy-induced neuropathy.  

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Only 9% of European hospitals allow patients to access their electronic health records

Only 9% of European hospitals allow patients to access their electronic health records | Patient Rights in Europe | Scoop.it

Some nice stats from two new Europa reports on the state of digital health in Europe:

 

According to two surveys in acute care hospitals (those intended for short-term medical or surgical treatment and care) and among General Practitioners (GPs) in Europe, the use of eHealth is starting to take off, with 60% of GPs using eHealth tools in 2013, up 50% since 2007. But much more needs to be done.

 

The main findings of the surveys include:

 

* Top performing countries for #eHealth uptake in hospitals are Denmark (66%), Estonia (63%), Sweden and Finland (both 62%). Full country profiles are available by clicking through on the title link above, then the embedded text in the second bulleted paragraph.

 

* eHealth services are still mostly used for traditional recording and reporting rather than for clinical purposes, such as holding consultations online (only 10% of GPs hold online consultations.

 

* When it comes to digitising patient health records, the Netherlands take the gold with 83.2% digitisation; with silver medal for Denmark (80.6%) and the UK taking home bronze (80.5%).

 

* However, only 9% of hospitals in Europe allow patients to access online their own medical records, and most of those only give partial access

 

* When adopting e-health, hospitals and GPs experience many barriers ranging from lack of interoperability to lack of regulatory framework and resources. 

 

 


Via Andrew Spong
Kathi Apostolidis's insight:

In Greece, patients have legally the right to consult their medical record but many hospital administrations put obstacles. Lack of Interoperability is another ailment.

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FRAX Eργαλείο αξιολόγησης του κινδύνου κατάγματος

FRAX Eργαλείο αξιολόγησης του κινδύνου κατάγματος | Patient Rights in Europe | Scoop.it

Το εργαλείο FRAX® αναπτύχθηκε από τον Παγκόσμιο Οργανισμό Υγείας (ΠΟΥ) για την εκτίμηση του κινδύνου κατάγµατος στους ασθενείς. Βασίζεται σε ατομικά μοντέλα ασθενών στα οποία ενσωματώνονται οι κίνδυνοι που σχετίζονται τόσο με κλινικούς παράγοντες κινδύνου όσο και με την οστική πυκνότητα (BMD) στον αυχένα του μηριαίου.

Τα μοντέλα FRAX® αναπτύχθηκαν από τη μελέτη κοορτών βασισμένων σε πληθυσμούς της Ευρώπης, της Βόρειας Αμερικής, της Ασίας και της Αυστραλίας. Στην πιο εξειδικευμένη του μορφή, το εργαλείο FRAX® είναι ηλεκτρονικό και διατίθεται στον παρόντα διαδικτυακό τόπο. Είναι επίσης διαθέσιμες αρκετές απλοποιημένες έντυπες εκδόσεις που βασίζονται στον αριθμό των παραγόντων κινδύνου και τις οποίες μπορείτε να "κατεβάσετε" για χρήση στο ιατρείο.

Οι αλγόριθμοι του FRAX® δίνουν τη 10ετή πιθανότητα κατάγματος. Το αποτέλεσμα είναι η 10ετής πιθανότητα κατάγματος του ισχίου και η 10ετής πιθανότητα μείζονος οστεοπορωτικού κατάγματος (κλινικό κάταγμα της σπονδυλικής στήλης, του αντιβραχίου, του ισχίου ή του ώμου).

Kathi Apostolidis's insight:

Βρήκα το εργαλείο FRAX (διαθέσιμο σε πολλές γλώσσες) που δίνει σημαντικές πληροφορίες σέ άτομα άνω των 50ετών, σχετικά με τον κίνδυνο να κάνουν κάταγμα. Οι εμμηνοπαυσιακές γυναίκες με ιστορικό ενός έστω κατάγματος (καρπού, αντιβραχίου, σπονδυλικής στήλης, ισχίου, ώμου) μετά την μέτρηση πυκνότητας οστικής μάζας να συζητήσουν με τον γιατρό τους τον ατομικό κίνδυνο κατάγματος που διατρέχουν και ποιά στρατηγική θα πρέπει να ακολουθήσουν για να μειώσουν τον κίνδυνο. 

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“Patientgate”—digital recordings change everything | BMJ

The UK General Medical Council shifted its view, from refusing to accept recordings made by patients to viewing such evidence as admissible when assessing professional practice. Some organizations that had at first “banned” patients from recording their own clinic appointments did U turns and developed formal policies that encouraged patients to record their encounters.

A consensus emerged on the online forum: patients do not need permission to record their own encounters, as it is viewed legally as a form of note keeping. Clinicians, however, are never exempt from needing patients’ consent to record clinical encounters. The online forum attracted legal contributions, debated the UK Data Protection Act and many other issues, and, when printed out, amounted to 300 pages of written material, documenting that it was not only legal for patients to record their own clinical encounters but that they were not required to get permission. Covert recording may well undermine relationships if discovered, but it is not illegal.

Kathi Apostolidis's insight:

Πόσα από όσα συζητήσατε με το γιατρό σας στη τελευταία ιατρική σας επίσκεψη θυμόσαστε; Πολύ λίγα..ιδιαίτερα άν η επίσκεψη είναι συναισθηματικά φορτισμένη άν πρόκειται να ενημερωθείτε για τα αποτελέσματα διαγνωστικών εξετάσεων για μια σοβαρή ασθένεια ή για να συζητήσετε θεραπευτικές επιλογές όταν ήδη μια θεραπεία δεν ήταν αποτελεσματική.... Μια λίστα με  ερωτήσεις για το γιατρό σας και η εγγραφή της συζήτησης θα βοηθούσε, ακούγοντας τη πάλι στο σπίτι να καταλάβετε καλίτερα τις προτάσεις του γιατρού σας...  Ο Δρ Glyn Elwyn μας μιλά για τις αντιδράσεις των ασθενών και τών γιατρών σχετικά΄με την ηχογράφηση της ιατρικής επίσκεψης.

Πως προετοιμαζόσαστε για την επίσκεψη στο γιατρό σας; ετοιμάζετε ερωτήσεις; κατά την επίσκεψη κρατάτε σημειώσεις;  ποιά είναι η στάση του γιατρού σας;

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RRResearch: Who really discovered trisomy 21? (righting an old wrong)

RRResearch: Who really discovered trisomy 21? (righting an old wrong) | Patient Rights in Europe | Scoop.it

Dr. Marthe Gautier discovered that trisomy 21 is the cause of Down syndrome, and Jerome Lejeune's saintly reputation is based on scientific fraud. - See more at: http://rrresearch.fieldofscience.com/2014/02/who-really-discovered-trisomy-21.html#sthash.k2vbIHxn.dpuf

Kathi Apostolidis's insight:

Για να μαθαίνουμε: H άγνωστη ιστορία της ανακάλυψης του γονιδίου που προκαλεί το σύνδρομο Down από τη Γαλλίδα γιατρό Δρα Μarthe Gautier και το πως ο Jerome Lejeune σφετερίσθηκε την ανακάλυψη της και βάσισε τη φήμη του σε επιστημονική απάτη....

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Resources for You - Carenovate Magazine

Resources for You - Carenovate Magazine | Patient Rights in Europe | Scoop.it
Below is a comprehensive list of resources. Our goal is to have a central location with these  resources, tools to help save time. We continue to add to the list. We welcome suggestions, additions. Email us info@carenovate.com or contact us. Alzheimer’s Disease Resources Alzbrain - http://www.alzbrain.org Alzheimer’s Association - http://www.alz.org Alzheimer’s Foundation of America - http://www.alzfdn.org National Institute on … Continue reading
Kathi Apostolidis's insight:

Φροντίζετε συγγενή ή φίλο ασθενή? θέλετε να μάθετε πως να τον/την περιθάλψετε καλίτερα? Βρήκα αυτή λίστα με ιστοτόπους ενημέρωσης φροντιστών ασθενών (φροντιστής αυτός που φροντίζει) στα Αγγλικά, άν υπάρχουν σχετικοί ιστοτοποι και στα Ελληνικά συμπληρώστε από κάτω 

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Inactivity and the brain: Why exercise is more important than ever - - The Buffer Blog

Inactivity and the brain: Why exercise is more important than ever - - The Buffer Blog | Patient Rights in Europe | Scoop.it

I know exercise is good for me. I know it’s important for my health, and necessary for general fitness. That part’s easy—we hear about how we should exercise more all the time. What I didn’t realise was how being inactive is really detrimental to the brain and body. 

I didn’t understand all of the specific ways regular activity can be beneficial, either. With a little digging around, I found some research that made me realise there’s much more to exercising than just getting fit.

Kathi Apostolidis's insight:

σηκωθείτε από τις καρέκλες! η ακινησία επηρρεάζει τη δομή του εγκεφάλου!

Η άσκηση βελτιώνει τη ψυχική υγεία, μειώνει το κίνδυνο να αρρωστήσουμε, βελτιώνει τον ύπνο, μειώνει το στρές και φτιάχνει τη διάθεση

διαβάστε το άρθρο και κάνετε και τις ασκήσεις που έχει στο τέλος

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Visit Greece | Bath town Aidipsos

Visit Greece | Bath town Aidipsos | Patient Rights in Europe | Scoop.it

Aidipsos is probably the most famous spa-town in Greece! This cute little town is situated in Northern Evia and is connected to the mainland by ferry from Arkitsa, in Fthiotida. Evia can be reached easily also by car, bus or train from Attica through the Cable Bridge.

 

The healing properties of Aidipsos thermal springs are known since ancient times and are actually mentioned in the scripts of Plutarch, Strabo and Aristotle.

 

According to mythology, the precious water flowed for the very first time when Hephaestus beat the land with his hammer. It was a favour to goddess Athena, who believed that the thermal springs would keep Hercules healthy and powerful!


During the Roman times, emperors and commanders frequented the place while centuries later the springs attracted important personalities, such as Winston Churchill, Greta Garbo and Maria Kallas.

 

A plethora of neoclassical mansions, lush plane trees and picturesque traditional cafes and restaurants envelop the town with a unique nostalgic atmosphere. In the hydrotherapy centre of the Greek National Tourism Organisation the visitor has the opportunity to gaze at an archaeological collection comprising finds from the excavations that took place in the area. Other archaeological sites around Aidipsos, such as the Sylla Cave, have re-opened inviting the public to discover them.

 
Kathi Apostolidis's insight:

Aedipsos is famous not only for its thermal springs but also for the splendind beauty of N. Evia. Aedipsos, is not only a thermal bath destination but also an attractive tourism destination from where one can explore the wonderful inland and coast of N. Evia..

 

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A Catalyst for Change: The European Cancer Patient’s Bill of Rights

....Strengthening and upholding the rights of individual cancer
patients and their families are the guiding principles of this
initiative. In order to provide tangible benefits for European
cancer patients, the ECC proposes the creation of a “European
Cancer Patient’s Bill of Rights,” a patient charter that will
underpin equitable access to an optimal standard of care
for Europe’s citizens. Three patient-centered principles
(termed“Articles”) underpin the European Cancer Patient’s
Bill of Rights:

 

Article 1: The right of every European citizen to receive the
most accurate information and to be proactively involved in
his/her care.
Article 2: The right of every European citizen to optimal and
timely access to appropriate specialized care, underpinned
by research and innovation.
Article 3: The right of every European citizen to receive care in
health systems that ensure improved outcomes, patient
rehabilitation, best quality of life and affordable health care.

.........

Cancer is placing an increasing health, economic, and societal
burden on Europe’s citizens. The current disparities between
European nations at all stages of the cancer patient’s journey
are no longer acceptable. In the context of the World Cancer
Declaration and the Europe 2020 strategy, we must respond
urgently to this pressing challenge or face a major epidemic
that will have a significant impact on both the wealth and
the health of the European citizen.

 

The ECC is actively engaging with all relevant stakeholders to deliver its vision and partnering with patients and advocacy groups, learned societies, cancer registries, industry, governmental agencies and
health care payers, the European Commission, the European
Medicines Agency, health technology assessment agencies,
cancer charities, and other key stakeholders.

 

The principle of inclusivity will be actively pursued, ensuring that the European citizen receives the maximum support and benefit from this
initiative. The vibrant engagement of health care professionals
and patients can help achieve progress in innovation,
research, and care to deliver improved outcomes for cancer
patients in Europe.

 

The European Cancer Patient’s Bill of Rights is a key early output, representing an important first step in a strategy to deliver measurable benefits for European society as a whole. Launching this bill of rights in the European Parliament onWorld Cancer Day, in partnership with European cancer patient organizations and Members of the European
Parliament Against Cancer (MEPs Against Cancer), represents
a clear commitment to promulgating and implementing this
catalyst for change for European citizens. If successful, it may
also provide a model for developing collaborative patientcentered
approaches to deliverequitable cancer care in other
regions throughout the world.

 

Kathi Apostolidis's insight:

H Eυρωπαϊκή Συμμαχία για τον Καρκίνο European Cancer Concord (ECC) είναι μια ασθενο-κεντρική πρωτοβουλία, που γεννήθηκε από την ανάγκη για βέλτιστα πρότυπα ογκολογικής περίθαλψης και έρευνας για τους Ευρωπαίους πολίτες. Η ενδυνάμωση και προάσπιση των δικαιωμάτων κάθε ογακολογικού ασθενούς/επιζώντα αποτελούν τις κατευθυντήριες αρχές. H Eυρωπαϊκή Συμμαχία για τον Καρκίνο European Cancer Concord (ECC) ιδρύθηκε πρίν δύο χρόνια με τη καθοδήγηση της Society for Translational Oncology (STO).

 

The European Cancer Concord (ECC) is a patient-centred initiative, born out of the need to deliver an optimal
standard of cancer care and research for Europe’s citizens. Strengthening and upholding the rights of the
individual cancer patient/cancer survivor are its guiding principles. ECC was formed 2 years ago under the
stewardship of the Society for Translational Oncology (STO).

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The social life of health information

The social life of health information | Patient Rights in Europe | Scoop.it
Our national survey finds that seven-in-ten (72%) adult internet users say they have searched online for information about a range of health issues, the most popular being specific diseases and treatments.

 

...However, Twitter, Facebook, blogs, and other platforms seem uniquely suited to adapt to the changing needs of people living with chronic health conditions, particularly as patients move from the shock of a new diagnosis to long-term management. This is particularly true for people facing a rare disease diagnosis. A new research paper released earlier this month studied parents of children with rare chronic diseases and found that social media in particular provided an effective support network. This echoes our own findings and adds to the pile of evidence showing the psychosocial benefits of connecting online....

Kathi Apostolidis's insight:

Αν κάποιος αμφιβάλλει ακόμη άν τα κοινωνικά μέσα διαδίκτυου είναι το κατάλληλο κανάλι για συζητήσεις για ανταλλαγή απόψεων και επικοινωνία ασθενών και οικογενειών για ασθένεια που τους αφορά, μάλλον δεν τα χρησιμοποιεί ή δεν αναζητά λύσεις σε  πολύ σοβαρό πρόβλημα υγείας...,

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What Nonprofits Should Stop Doing in 2014: Advice From Experts

What Nonprofits Should Stop Doing in 2014: Advice From Experts | Patient Rights in Europe | Scoop.it
Stop ignoring midlevel donors, using fuzzy language, and jumping on every social-medial platform that comes along.
Kathi Apostolidis's insight:

είσθε εθελοντική οργάνωση & ετοιμάζετε το πρόγραμμα χρηματοδότησης 2014; επαγγελματίες του χώρου συμβουλεύουν τις οργανώσεις, διαβάστε προσεκτικά και προσαρμόστε στή δική μας πραγματικότητα  

 

 

 

 

 

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ESMO Position Paper | Data Protection Regulation | ESMO

On 12 March 2014, the European Parliament voted on its position
on the new European Union (EU) proposal for a General
Data Protection Regulation, which will be now negotiated
among the European Parliament, the Council of the European
Union and the European Commission [1]. The final text will set
the rules under which personal data are to be handled in the
EU. It will thus affect many areas of our everyday life, including
health and research. The cancer community is deeply concerned
about unintended consequences of the current wording of the
draft Regulation [2], which may put at stake the survival of
retrospective clinical research, biobanking, and populationbased
cancer registries in the EU. In fact, the EU Parliament’s
recent. Resolution [3] on the Regulation imposes, or may be
interpreted as imposing, the requirement for researchers to ask
for a patient’s ‘specific’ consent every single time new research is
carried out on already available data and/or tissues. This would
lead to the necessity of researchers continuously asking patients
to ‘re-consent’ for every single use of their data.

............

In summary, patients should have the right to ‘donate’ their data
and tissues to health research. Patient consent for use of data or
tissue for health research should be a fully informed, withdrawable,
more or less broad, ‘one-time’ process, which truly implements
the patients’ rights, rather than creating burdensome,
possibly harmful consequences to the patients’ community. The
patient shall retain access to the tissue and data donated, hence
ensuring him/her to obtain relevant information related to his/
her condition. On the contrary, denial of this right would make
patients less free, because they would be denied a civil right, i.e.
to contribute to research, which advances knowledge and leads
to new ways of improving their health and that of other patients.
There need to be put in place legal provisions to protect data
confidentiality, reviewing mechanisms to oversee retrospective
researches and biobanks, and a system allowing full transparency
of research processes and storage of patient tissue in biobanks.
Cancer registries should be able to register cancer cases
and patient data without the requirement of patient consent, in
order to provide society and health administrators with exhaustive
health data for public health policy decisions.

Kathi Apostolidis's insight:

H πρόταση του Ευρωκοινοβουλίου για το Γενικό Κανονισμό Προστασίας Προσωπικών Δεδομένων επηρεάζει όλες τις πλευρές της ζωής μας.  Οι σοβαρές επιπτώσεις που συγκεκριμένες διατάξεις της πρότασης Κανονισμού μπορούν να έχουν  στην ιατρική έρευνα και την υγειονομική περίθαλψη είναι το αντικείμενο της τεκμηριωμένης θέσης των επιστημονικών και οργανώσεων ασθενών από το χώρο της ογκολογίας. Διατάξεις της πρότασης Κανονισμού απαιτούν την εγγραφη ενήμερη συναίνεση του ασθενούς κάθε φορά που προσωπικά του δεδομένα  ή βιολογικά του δείγματα χρησιμοποιούνται στην κλινική έρευνα, τα μητρώα νεοπλασιών, τις τράπεζες βιολογικού υλικού. Πρακτικά αυτό είναι αδύνατον και το αποτέλεσμα θα είναι να σταματήσει η κλινική έρευνα και η λειτουργία των τραπεζών βιολογικού υλικού. Η ΕSMO, η ECPC και οι ογκολογικές επιστημονικές εταιρείες ζητούν την αλλαγή των Τροποποιήσεων 191 & 194  του Ευρωκοινοβουλίου στα άρθρα 81 και 83 διότι θα καταστήσουν αδύνατη την δημόσια κλινική έρευνα στις χώρες της ΕΕ.

 

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Can You Afford Your Medicine? Doctors Don't Ask

Neither doctors nor medical students can solve a patient’s financial problems on the spot. Yet any one of us can be the first to detect a problem.

....

“The co-pay is $2.17,” the pharmacist told me matter-of-factly, referring to a white paper bag with a few pill-filled bottles inside.

 

I was speechless. The medications cost less than a subway ticket, but were still more than my patient could afford. If he ended up in the hospital again because he couldn’t take them, the medical costs would be thousands of times greater than $2.17. And if he couldn’t afford the medications, he was no doubt also having trouble affording the basic grocery items that would speed his return to good health.

......

Neither doctors nor medical students can solve a patient’s financial problems on the spot. Yet any one of us can be the first to detect a problem. If we’ve done the research, we can help patients get the assistance they need, or at least direct them to social workers, pharmacists and other members of the health care team who can. What we cannot do is fail to ask.

Kathi Apostolidis's insight:

To ότι οι γιατροί δεν ενδιαφέρονται για το κόστος της θεραπείας που προτείνουν δεν είναι κάτι που συμβαίνει μόνον στις ΗΠΑ. Θεωρούν ότι το καθήκον τους τελειώνει με την συνταγογράφηση του πλέον αποτελεσματικού φαρμάκου που συνήθως είναι το ακριβότερο.....

Συμβαίνει παντού....και ιδιαίτερα στις Ευρωπαϊκές χώρες που έχουν πληγεί από την οικονομική κρίση....

Τα εκατομμύρια των Ευρωπαίων ανέργων έχουν να αποφασίσουν μεταξύ επιβίωσης και υγείας...και πολλές φορές αναγκάζονται να ξοδέψουν τα ελάχιστα χρήματά τους για επιβίωση...

 

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Having cancer is not a fight or a battle

Having cancer is not a fight or a battle | Patient Rights in Europe | Scoop.it
Why is military language used to describe cancer? These words are meant to help patients but can have the opposite effect, writes Kate Granger

 

....

However, I do understand why this military language has penetrated the media, charities and everyday life. It is meant to evoke positivity at an unimaginably difficult time in someone's life. But I think it can have the opposite effect and we need to challenge it and to break away from how we have been conditioned to think and speak about a disease that will affect one third of us at some point.

Even for those who survive or "conquer" the disease, it will remain with them for the rest of their lives; they may be left disfigured by treatment and have to live with the constant anxiety that their cancer may return. They may not wish to have the label of "survivor", which must interfere with the return to normality.

.......

Kathi Apostolidis's insight:

H εξαιρετική Δρ. Kate Granger που κρατά ημερολόγιο για τη πορεία της ασθένειας της στο twitter και που προσπαθεί να μάθει τους Αγγλους γιατρούς, να συστήνονται με το όνομά τους στους ασθενείς που βλέπουν στο νοσοκομείο, έγραψε ενα εξαιρετικο άρθρο για τη πολεμική ορολογία που χρησιμοποιείται μιλώντας για τον καρκίνο. Υπάρχει αρκετή σχετική βιβλιογραφία, το άρθρο όμως της Dr. Granger ξεχωρίζει διότι η ίδια είναι γιατρός και ασθενής με πολύ σοβαρή μορφή καρκίνου...

Στη χώρα μας ακόμη μιλούμε για την επάρατη νόσο, για τη μάχη με τον καρκίνο και διάφορα άλλα...κάνει αυτή η ορολογία τους ασθενείς και τους συγγενείς τους να αισθάνονται καλίτερα; τους ενθαρρύνει ή τους κάνει να νοιώθουν πολύ χειρότερα....

Ποιά είναι η άποψή σας;

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What It Really Takes to Listen to Patients

What It Really Takes to Listen to Patients | Patient Rights in Europe | Scoop.it
Tips from a doctor who's been on both sides of the stethoscope.

.....

Get authentic patient voices in the room. To lead change in health care, organizations must get in the room the voices of real patients – people whose lives are touched by our products and services.

Whether it’s legislation or strategy, the best-intentioned and most carefully considered policies will have weaknesses that are exposed only through execution. It’s no surprise that complex processes will face challenges in implementation. But by integrating patient voice early and often, those roadblocks can be better understood and more quickly remedied.

At Merck, Michael Rosenblatt, the company’s chief medical officer, and I worked with colleagues to develop “patient input forums.” This initiative brings in volunteer patients who suffer from health conditions relevant to Merck’s research. The forum typically features patients interviewed by master clinicians who are their treating physicians.

Through these forums, Merck scientists can better understand disease from the patient’s perspective, ask questions about care treatment and process, and identify areas of unmet need. They see firsthand that a patient isn’t a disease with a body attached but a life into which a disease has intruded.

At a minimum, these forums provide inspirational value to people within the company who support the company’s mission of improving and saving lives. At best, these forums can be the source of new insights to drive discovery.

Kathi Apostolidis's insight:

Dr. Sachin H. Jain has some valuable arguments for his colleagues all over the world to include the patient voice in policy making or strategy in health care. Many thought leaders in health care have the same opinions, and we see more and more health care organizations to include patients in committees  or working groups  But there is an apparent danger that as patient participation is considered desirable in healthcare projects, that it becomes just a "life-style" attribute. Patients and patient representatives recently are asked more and  to participate in projects, committees, working groups by health care providers and health industry. Before committing their valuable time and energy, they should very carefully examine the scope and content of the patient participation. What their role will be? What is the procedure to evaluate and acknowledge patients' comments, interventions, proposals?

Do you have similar experience? Would you like to share it with us? 

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Tunnah’s musings: Patients’ lives are more important than their data

Tunnah’s musings: Patients’ lives are more important than their data | Patient Rights in Europe | Scoop.it

On February 28th, Rare Disease Day, pharmaphorum's Paul Tunnah moderated a tweetchat exploring several issues, including where the balance should be between protecting patient privacy and open data sharing to drive new treatments. 

......

One of the questions put to the participants (including medics, pharma, patient associations, analysts and patients, their families and carers) was the following:



The response from the patients and their representatives seemed to be pretty clear on this one (see below). Their focus was firmly on finding effective treatments for their conditions and those of their loved ones. For them, data protection was a secondary issue to tackling the problem itself. In fact, there are a number of clear examples in the rare disease space where they proactively go much further the other way, sharing information as widely as possible in the hope of finding a cure. For example, see the amazing work done by Melissa Hogan to help her son via the Saving Casecampaign.

Kathi Apostolidis's insight:

Tι προέχει μεταξύ προστασίας προσωπικών δεδομένων και παροχής σε ερευνητές προσωπικών δεδομένων και βιολογικών δειγμάτων σε περίπτωση σπάνιας ή σοβαρής ασθένειας.; Υπάρχουν πολύ διαφορετικές απόψεις σχετικά με την προστασία των δεδομένων του ασθενούς, μεταξύ γιατρών, νομικών, κοινωνιολόγων και άλλων επιστημόνων, ενώ οι ασθενείς ενδιαφέρονται για το σημαντικό: να βρεθεί θεραπεία για το πρόβλημα υγείας που αντιμετωπίζουν. Αυτό όμως δεν μπορεί να γίνει χωρίς οι ερευνητές να έχουν πρόσβαση σε βιολογικά δείγματα (δέρμα, οργανα, αίμα, σίελος, κ.ά.) και  στα προσωπικά δεδομένα των ασθενών, προκειμένου να παρακολουθήσουν την αποτελεσματικότητα θεραπειών έχουν λάβει ή την εξέλιξη της υγείας τους.    

Αρκεί η συζήτηση να διεξάγεται μόνον μεταξύ επαγγελματιών υγείας, χωρίς ευρεία συμμετοχή των ασθενών που είναι οι άμεσα ενδιαφερόμενοι;  Δεν είναι δύσκολο σήμερα να συγκεντρωθούν οι απόψεις των ασθενών, διότι όπως είπε η εκπρόσωπος οργάνωσης για τη νόσο  Αλτσχάιμερ (ΑLSAdvocacy):  "απλά ρωτήστε τους".

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Tessa Richards: Access to health records—patients first

Tessa Richards: Access to health records—patients first | Patient Rights in Europe | Scoop.it

An excellent and well argumented article of Dr. Tessa Richards on the decision  of the UK government to proceed to  collect data from patients’ medical records to build a new NHS database—care.data- while  UK patients' access to data is restricted only to information in the summary care record with full access restricted to prospective data collection.

 

......It is therefore disappointing that the government has now watered down its commitment on patient access to records. All patients are now being guaranteed by 2015 is access to information in the summary care record with full access restricted to prospective data collection.

Is this really in the best interests of patients? Particularly those with long histories and complex disorders who tend to be seen by many different health professionals, some of whom struggle and fail to get on top of their history and problems in short consultations. It would seem that the benefits of empowering patients through giving them full access to their information have been trumped by doctors concerns about the downsides of doing this, such as the time it may take to deal with patients who spot errors (a good thing), are baffled by medical terminology, and upset by unsuspected  “gremlins”  in the notes.

But are these concerns overplayed? Experience in the US from the Open Notes initiative,which looked at the impact of letting patients see everything that is recorded in their medical notes, suggests that the benefits outweigh the concerns and there has beenscant impact on doctor’s workloads. There is also evidence that once patients and doctors go down this route most prefer it. (New Eng J Med 2014;370:6-8)

Patient distrust and disillusionment over who gets to see their health data has been rising.So is demand by patients  for full access to their health information. Patients may not be storming the barricades, but their frustrations and fears about access to their health information should prompt further debate. Much has been made of the potential benefits to health research of being able to analyse big data sets, but less on what individuals stand to gain by access to their own health information. Nor is there yet sufficient attention being paid to the value of the parallel mines of information patients share among themselves. In an eloquent video clip, Paul Wicks of Patients Like Me, makes a compelling case for reaping the benefits of both data sets. “Let’s collect national data,” he says, “but let’s also link it to the data that e-patients are generating for themselves.”

Kathi Apostolidis's insight:

Tessa Richards wrote an excellent article on UK patient access to their health records. and how the UK government made a half turn revoking their previous decision to allow patient acces to their health records  by 2015. This is an important development that might affect other European healthcare systems, despite requirements and EU policies (http://bit.ly/1gQEAMl) . It should not be overlooked that European healthcare systems are considering what happens in the British NHS, while re-examining how they will continue to be sustainable and offer services assuring public health and satisfying needs of their patients. It seems like healthcare systems despite verbalisms of patient-centricity, are still far from reaching it. 

Η Tessa Richards, senior editor/BMJ  έγραψε ένα πολύ ενδιαφέρον άρθρο για την πρόσβαση των Βρεττανών στον ηλεκτρονικό τους φάκελλο υγείας. Στην Ελλάδα μας απασχολεί η πρόσβαση στον ηλεκτρονικό  φάκελλο ασθενούς; Γνωρίζουν οι ασθενείς τη σημασία του να έχουν ένα πλήρη ηλεκτρονικό φάκελλο υγείας και να έχουν τη δυνατότητα να τον συμβουλευθούν; Το Υπουργείο Υγείας ενδιαφέρεται για την καθιέρωση του ηλεκτρονικού φακέλλου ασθενούς; Θα έπρεπε,  εξ άλλου έχει υποχρεώσεις σχετικά με την εφαρμογή προγραμμάτων e-health... Στη σημερινή κατάσταση στην υγεία, ο ηλεκτρονικός φάκελλος ασθενούς και η πρόσβαση των ασθενών στα δεδομένα τους, είναι μάλλον χαμηλά στις προτεραιότητες των ασθενών που ταλαιπωρούνται από άλλες «μεταρρυθμίσεις» στο χώρο της υγείας....

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When Doctors Need to Lie

When Doctors Need to Lie | Patient Rights in Europe | Scoop.it
Misleading your patient? Defying his wishes? Sometimes in medicine these things are necessary.

...

The moral basis for withholding information from such a patient is clear: Above all, physicians must do no harm. The underlying philosophy is paternalism. Paternalism derives from the image of the paternal figure, the father, in a family. The father is motivated by an interest in his children’s welfare. He acts on their behalf, but not at their behest. The beneficiaries — his children — may even repudiate the actions taken on their behalf.

Such paternalism was once widely accepted in medicine. In the mid-19th century, the American Medical Association’s code of ethics stated that physicians had a “sacred duty” to “avoid all things which have a tendency to discourage the patient and depress his spirits.” But times have changed. The prevailing ethical mantra in medicine is patient autonomy. Today, patients own their health information. They have the right to direct their own care, and to do so they must be fully informed. As doctors, we no longer “care for” as much as “care with” our patients through their illnesses.

Kathi Apostolidis's insight:

Oφείλουν οι γιατροί να είναι ειλικρινείς και να λένε όλη την αλήθεια για την κατάστασή τους στους ασθενείς τους; Πατερναλισμός απέναντι στον ασθενή ή αποδοχή της αυτονομίας του να αποφασίσει; Mήπως η αποφυγή της αλήθειας είναι ένδειξη ότι οι ίδιοι οι γιατροί δεν είναι σε θέση να διαχειρισθούν την επικοινωνία δυσάρεστης διάγνωσης διότι δεν θά ήταν οι ίδιοι έτοιμοι να δεχθούν μια δύσκολη διάγνωση; Δεν συμβαίνει μόνον εδώ οι συγγενείς να πιέζουν το γιατρό να μή φανερώσει όλη ή καθόλου την αλήθεια στον ασθενή. Συνιστώ να διαβάσετε και τα εξαιερετικά σχόλια στο άρθρο από γιατρούς, ασθενείς και συγγενείς.

 

Οι ασθενείς αποδέχονται όμως τη πατερναλιστική συμπεριφορά των γιατρών; Θέλουν οι ασθενείς ειλικρίνεια αλλά και συμπαράσταση και συνεργασία από το γιατρό τους ή προτιμούν να κάνουν θεραπείες καί να παίρνουν φάρμακα χωρίς να γνωρίζουν ακριβώς γιατί;

 

Θα ήταν ενδιαφέρον να κάνουμε αυτή τη συζήτηση. Μέχρι τώρα τα θέματα ηθικής και δεοντολογίας ήταν στη χώρα αποκλειστικά για επαγγελματίες υγείας. Ας ανοίξουμε τη συζήτηση..

 

 

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Hôpital : rogner sur les postes infirmiers augmente le taux de mortalité des patients - News Santé - Doctissimo

Hôpital : rogner sur les postes infirmiers augmente le taux de mortalité des patients - News Santé - Doctissimo | Patient Rights in Europe | Scoop.it

Menée dans 9 pays européens, l'étude publiée dans The Lancet⊃1; a porté sur près d'un ½ million de patients hospitalisés dans 300 établissements de soins. Elle montre qu'une forte dotation en personnel infirmier, ainsi qu'un niveau d'études élevé de ce personnel, sont associés de manière significative à une moindre mortalité après des actes de chirurgie simples.

Plus la charge de travail des infirmiers est lourde, autrement dit plus il ont de patients auxquels ils doivent se consacrer, et plus le taux de mortalité dans l'hôpital s'élève. La relation est inversement proportionnelle avec le niveau de qualification des infirmiers.

Plus précisément, chaque augmentation d'un patient dans le ratio patient/infirmier augmente de 7 % la mortalité des malades, tandis que l'augmentation de 10 % du nombre d'infirmiers dotés d'une licence correspond à un déclin de 7 % de la mortalité.

Cela signifie que les patients hospitalisés dans des établissements dans lesquels 60 % des infirmiers ont une licence et s'occupent en moyenne de 6 patients chacun ont un risque de décès inférieur de 30 % à ceux opérés dans des hôpitaux où seuls 30 % des infirmiers ont leur licence et où la charge de travail est de 8 patients chacun.


Via Giovanna Marsico
Kathi Apostolidis's insight:

Tα μέτρα λιτότητας που στοχεύουν στη μείωση του νοσηλευτικού προσωπικού των νοσοκομείων για τη μείωση του λειτουργικού κόστους μπορούν να αποδειχθούν μοιραία για τους ασθενείς, σύμφωνα με μελέτη που εξετάζει τη θνησιμότητα νοσηλευομένων με τον αριθμό των νοσηλευτών ενός νοσοκομείου και με το εκπαιδευτικό τους επίπεδο.

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Greece's health crisis: from austerity to denialism : The Lancet

Greece's health crisis: from austerity to denialism. By - Alexander Kentikelenis MPhil, Marina Karanikolos MPH, Aaron Reeves PhD, Prof Martin McKee DSc, David Stuckler PhD

 

Despite the rhetoric of “maintaining universal access and improving the quality of care delivery”29 in Greece's bailout agreement, several policies shifted costs to patients, leading to reductions in health-care access.In 2011, user fees were increased from €3 to €5 for outpatient visits (with some exemptions for vulnerable groups), and co-payments for certain medicines have increased by 10% or more dependent on the disease.24 New fees for prescriptions (€1 per prescription) came into effect in 2014.24 An additional fee of €25 for inpatient admission was introduced in January 2014, but was rolled back within a week after mounting public and parliamentary pressure. Additional hidden costs—eg, increases in the price of telephone calls to schedule appointments with doctors—have also created barriers to access.26Another concern is the erosion of health coverage. Social health-insurance coverage is linked to employment status, with newly unemployed people aged 29—55 years covered for a maximum of 2 years. Rapidly increasing unemployment since 2009 is increasing the number of uninsured people. Those without insurance are eligible for some health coverage after means testing, but the criteria for means testing have not been updated to take into account the new social reality.34 An estimated 800 000 potential beneficiaries are left without unemployment benefits and health coverage.35 To respond to unmet need, several social clinics (primary care practices staffed by volunteer doctors) have sprung up in urban centres.36 Médecins du Monde has scaled up operations in Greece, and reports increasing numbers of Greek citizens receiving health services and drugs from their clinics as the economic crisis deepens;37 before the crisis, such services mostly targeted immigrant populations.

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Κρήτη: Εκπαιδευτικά σεμινάρια για φροντιστές ασθενών με καρκίνο | Κοινωνικη Πολιτικη Κοινωνικη Θεωρια

Κρήτη: Εκπαιδευτικά σεμινάρια για φροντιστές ασθενών με καρκίνο | Κοινωνικη Πολιτικη Κοινωνικη Θεωρια | Patient Rights in Europe | Scoop.it

Το Κέντρο Νοσηλευτικής Φροντίδας και ο Σύλλογος «Ευ Ζω με τον καρκίνο», διοργανώνουν μία σειρά μαθημάτων που αφορούν στην φροντίδα κατ΄οίκον ασθενών με νεοπλασματική νόσο.αλλά και γενικότερα σε θέματα φροντίδας ασθενών στο σπίτι.

Ώρα Έναρξης 18.00

Είσοδος Ελεύθερη

Πληροφορίες – Επικοινωνία

«Ευ Ζω με τον καρκίνο» Τηλ.2810-287895 (πρωί & Τρίτη-Πέμπτη Απογ.)

Κέντρο Νοσηλευτικής Φροντίδας Τηλ.2810-242210 Τρίτη & Πέμπτη 17.00– 19.00

Κέντρο Νεότητας Αγίου Τίτου Τηλ. 2810-283091, καθημερινά, εκτός Κυριακής, από τις 5 το απόγευμα μέχρι τις 9 το βράδυ



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Συγχαρητήρια στους εμπνευστές και τους συντελεστές του προγράμματος! Παρόμοια προγράμματα χρειάζεται να γίνουν και με την υποστήριξη των Γεν. Περιφ. Νοσ. και των Ιατρικών Σχολών σε όλες τις μεγάλες πόλεις....

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The Power of the Patient: How Parents And The Internet Transformed Clubfoot Treatment

The Power of the Patient: How Parents And The Internet Transformed Clubfoot Treatment | Patient Rights in Europe | Scoop.it
Surgery used to be the treatment of choice for clubfoot, until parents started pushing for change.
Kathi Apostolidis's insight:

Dr. Herzenberg: Clubfoot is a real prototype for how the Internet has changed medicine and how parents have been the driving force in many ways.


Αλλη μια απόδειξη για το πόσο το ιντερνέτ άλλαξε το τρόπο με τον οποίο οι ασθενείς και οι οικείοι τους αντιμετωπίζουν ένα σοβαρό πρόβλημα υγείας...Χωρίς τη δυνατότητα ενημέρωσης, επικοινωνίας με άλλους γιατρούς, ερευνητές, ασθενείς οι ασθενείς δεχόντουσαν τη γνωμάτευση και τη μοναδική πρόταση θεραπείας που ελάμβαναν... Το ιντερνέτ παρέχει νέες δυνατότητες ενημέρωσης και επικοινωνίας που ήταν ασύλληπτες πρίν 10-15 χρόνια..

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Σχέδιο Nόμου «Πρωτοβάθμιο Εθνικό Δίκτυο Υγείας (Π.Ε.Δ.Υ.) και Λοιπές Διατάξεις» - Δημόσια Διαβούλευση - Υπουργείο Υγείας

Σχέδιο Nόμου «Πρωτοβάθμιο Εθνικό Δίκτυο Υγείας (Π.Ε.Δ.Υ.) και Λοιπές Διατάξεις» - Δημόσια Διαβούλευση - Υπουργείο Υγείας | Patient Rights in Europe | Scoop.it

Πρός

Τον Υπουργό Υγείας & Κοινωνικής Ασφάλισης

κο Αδωνι Γεωργιάδη

 

Κοινοποίηση: κο Δημήτρη Κοντό-Πρόεδρο ΕΟΠΥΥ

 

Αξιότιμε Κύριε Υπουργέ,

Οι οργανώσεις ασθενών χρονίων παθήσεων παρακολουθούν με ανησυχία τα τεκταινόμενα στο χώρο της υγείας, που μετά από τέσσερα χρόνια «μεταρρυθμίσεων», είχαν ως αποτέλεσμα την συνεχή μετακύλιση σημαντικού ποσοστού του κόστους υπηρεσιών υγείας στους ασφαλισμένους, την υποβάθμιση των παρεχομένων υπηρεσιών, ελλείψεις σε ιατρούς και νοσηλευτές στα νοσοκομεία και κυρίως τον αποκλεισμό εκαντοτάδων χιλιάδων πολιτών από το σύστημα υγείας, επειδή λόγω της οικονομικής κρίσης βρέθηκαν χωρίς εργασία.
Οι ασθενείς επιθυμούν την ύπαρξη ενός συγχρόνου συστήματος ΠΦΥ στο οποίο, όπως και η Γενική Διεύθυνση Υγείας και Καταναλωτών -ΓΔΥΚ της Ε.Ε. αναφέρει στην ιστοσελίδα της, «ο γιατρός είναι ο οδηγός στο όχημα της υγείας, στο οποίο συνοδηγός είναι ο ασθενής», που επιθυμεί να τονίσει την σημασία που αποδίδει η ΓΔΥΚ στη ενεργή συμμετοχή των ασθενών σε όλες τις δραστηριότητες του συστήματος υγείας.
Επιφυλασσόμεθα να υποβάλλουμε τις παρατηρήσεις μας στο Σχέδιο Νόμου, αλλά πριν από αυτές, επιθυμούμε να σας γνωρίσουμε τις θέσεις των ασθενών χρονίων παθήσεων για τις αρχές που επιθυμούμε να διέπουν το ΠΦΥ, σύμφωνα με τα διεθνώς ισχύοντα και εφαρμοζόμενα σε πολλές Ευρωπαϊκές χώρες.
Είμαστε στη διάθεσή σας καθώς και του ΕΟΠΥΥ για την υποστήριξη των ως άνω θέσεων μας και την παροχή τυχόν διευκρινίσεων.
Με εκτίμηση,
Τα μέλη της Οργανωτικής Επιτροπής
Του Πανελληνίου Συνεδρίου Ασθενών
Patients in Power



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