Patient Rights in Europe
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Engaged Patients & Patient Engagement: Different Directions In More Ways Than One | Patient-Driven Care

Engaged Patients & Patient Engagement: Different Directions In More Ways Than One | Patient-Driven Care | Patient Rights in Europe | Scoop.it

An engaged patient is someone deeply involved in the scientific understanding of their disease, fully aware at all times of the entire spectrum of available therapeutic options. It requires a set of learning, cognitive and psycho-social tools that can only be acquired by conversing often with a real network of peers who are similarly involved in this complex endeavor. Because most of the communities where these activities take place are either hidden or hard to find (due to privacy concerns), the health care world is usually unaware of the depth of experience demonstrated daily by these groups. It reminds me of what Michael Nielsen said in Re-Inventing Discovery:

But often the most important revolutions aren’t announced with the blare of trumpets. They occur quietly, too slowly to make the news, but fast enough that if you aren’t alert, the revolution is over before you’re aware it’s happening.

Kathi Apostolidis's insight:

Aν δεν έχετε καταλάβει τι σημαίνει ο όρος "patient engagement", που θα τον συναντάτε συχνά φέτος, το άρθρο του Gilles Frydman, ιδρυτή της acor.org & μέλους της συντακτικής ομάδας της "βίβλου" του κινήματος των e-patients, είναι πολύ κατοπιστικό και καλογραμμενο

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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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If A New Cancer Drug Is Hailed As A Breakthrough, Odds Are It's Not

If A New Cancer Drug Is Hailed As A Breakthrough, Odds Are It's Not | Patient Rights in Europe | Scoop.it
Untested cancer drugs are often hyped by journalists, doctors and biotech firms, a survey finds. Dressing up unproved medications with shiny words can inspire false optimism among patients.

....

"Cure has a very formal definition," says Prasad. It means that after taking a medication over a period of time, a subset of patients — not all — return to life as if they did not have the disease at all. As he wrote in the American Journal of Hospice and Palliative Medicine, even among academics the word is used in different ways. Searching through academic oncology articles published since 2012, Prasad found that about half used the term "cure" when in fact, the evidence showed the disease to be incurable.

There's a saying among cancer experts, says Prasad: "We've been curing mice of cancer since the 1970s." Testing a drug's effectiveness in humans is, as one might expect, another animal. So is getting approval from the FDA. "The odds of getting FDA approval are lotterylike" when a drug is in the pipeline, says Prasad, though the odds improve substantially once the drug is submitted. The FDA approves a drug if the benefits of taking it outweigh the risks. If a drug doesn't get FDA approval, it can't go to market. But even if a drug does get approved, that doesn't mean it's going to work in everyone who takes it.

Kathi Apostolidis's insight:

Ο τρόπος με τον οποίο τα μέσα μαζικής ενημέρωσης παρουσιάζουν τα αποτελέσματα των κλινικών μελετών  όχι μόνον επηρρεάζει την κοινή γνώμη, και ιδιαίτερα τους ασθενείς με καρκίνο, που έχοντας εξαντλήσει όλες τις διαθέσιμες θεραπείες, αναζητούν το νέο θαυματουργό φάρμακο που θα τους κάνει καλά, αλλά πολλές φορές τα νέα αυτά είτε είναι υπερβολικά είτε απέχουν από τα αποτελέσματα των μελετών. Το ερώτημα είναι πόσοι δημοσιογράφοι υγείας είναι σε θέση να διαβάσουν κριτικά ανακοινώσεις για αποτελέσματα κλινικών μελετών, να διακρίνουν την ήρα από το σιτάρι και να ενημερώσουν ουσιαστικά τους αναγνώστες τους; Η αναπαραγωγή ειδήσεων με εντυπωσιακούς τίτλους μπορεί να εξυπηρετεί το μάρκετιγκ των μέσων αλλά δεν "κάνει καλό στην υγεία" των αναγνωστών..

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Forbes Welcome

Forbes Welcome | Patient Rights in Europe | Scoop.it
Why People With Metastatic Breast Cancer Want To Get Counted

The number of people living with stage 4, metastatic breast cancer is unknown. A journalist or doctor might be surprised by this lack of information, as I was surprised a few years back. The NCI is working to fill this knowledge gap (see below). Yet there’s not even a ballpark figure – give or take, say, 20,000 U.S. people – for the number of women and men who have this incurable condition.

Estimates exist. A range of 150,000 to 250,000, for instance, appears in connection with a recent educational campaign and photo-essay, Story Half Told, on metastatic breast cancer put forth by Pfizer, the pharmaceutical company. Pfizer includes this estimate in a related infographic, in astatement of need, and in a public document, The Value of Medicine in Metastatic Breast Cancer.

The source listed in these Pfizer documents is a page from the website AdvancedBC.org. From that post, of 2006, it’s evident that Musa Meyer, an author and long-time advocate for people affected by advanced breast cancer, and Susan Grober, PhD, for Living Beyond Breast Cancer, were asking these questions ten years ago.

Kathi Apostolidis's insight:

..και στην Ευρώπη, στην Ελλάδα πόσες γυναίκες ζουν με μεταστατικό καρκίνο του μαστού? Τι γνωρίζουν γι αυτές οι αρμόδιες αρχές, ογκολογικές επιστημονικές εταιρείες, οργανώσεις ασθενών? Μπορει να γνωρίζουμε ένα - δύο άτομα στο περιβάλλον μας, όμως πόσες είναι στη χώρα? ποιά προβλήματα αντιμετωπίζουν? Ο καρκίνος του μαστού είναι αυτή η σιωπηλή ομάδα ασθενών που σε άλλες χώρες όπως άρχισε να φωνάζει δυνατά. Διαβάστε το αρθρο της Δρος Elaine Schattner και θα καταλάβετε γιατί πρέπει το σύστημα υγείας, το Εθνικό Αρχείο Νεοπλασιών, να γνωρίζουν τον αριθμο των ασθενων με μεταστατικό καρκίνο του μαστού.

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The Next Era of Palliative Care -JAMA Network | JAMA |

To improve palliative care for patients with serious illness, 3 changes must occur. First, palliative care specialists need to develop skills in clinician behavior change, system change, and quality improvement. Second, health systems need to expand their focus to develop programs that measure and improve the quality of palliative care that every patient receives. Third, federal funding must be aligned with a national goal of improving the experience of seriously ill patients and their loved ones. In short, the field of palliative care has expanded substantially over the past 20 years by demonstrating the value of involving palliative care specialists earlier and more routinely in the care of seriously ill patients. Moving forward, palliative care is likely to have the greatest benefit by teaching others clinicians to provide patient and family-centered care, designing systems, and advocating for policy changes that help make the involvement of specialists less necessary.

Kathi Apostolidis's insight:

Πολύ ενδιαφέρον άρθρο στο νέο JAMA για τη παρηγορική  φροντίδα στις ΗΠΑ. των Yael Schenker, MD, MAS; Robert Arnold, MD,, που βοηθά να σκεφθούμε πως να οργανώσουμε την ανακουφιστική φροντίδα στη χώρα μας. Δυστυχώς η παρηγορική φροντίδα εξακολουθεί να μην έχει την αναγνώριση και την ενσωμάτωση που της αξίζει στην υγειονομική περίθαλψη, ιδιαίτερα στην ογκολογική.

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Measuring What Matters In Primary Care

Measuring What Matters In Primary Care | Patient Rights in Europe | Scoop.it

Numerous studies have confirmed the central role of excellent primary care to any health system. Yet how to define the presence of excellent primary care remains a challenge. A recent review found that five characteristics remain the “sine qua non” for primary care practice:

Accessible (first contact) careContinuous careComprehensive careCoordinated careAccountable/whole-person care.

Each individual feature is necessary, but not alone sufficient, to assure high quality primary care. Clinicians and practices may provide one or even a few of these elements but do not fulfill the primary care role. For example, a retail clinic that provides only first contact care, no matter how accessible, would lack the continuity and coordination inherent to the primary care role. Continuous care of a serious chronic condition like systemic lupus or multiple myeloma is not by itself primary care; to serve in that role the treating rheumatologist or hematologist must also be accessible and able to address common or urgent concerns as well.

Kathi Apostolidis's insight:

Tα πέντε βασικά χαρακτηριστικά της ΠΦΥ θεωρούνται τα εξής

1. Προσβασιμότητα των υπηρεσιών υγείας

2. Συνέχεια της υγειονομικής περίθαλψης

3. Ολοκληρωμένη περίθαλψη

4. Συντονισμένη περίθαλψη

5. Περίθαλψη που καλύπτει τόν άνθρωπο όχι το σύμπτωμα

 

Πόσο τα ανωτέρω αποτελούν προϋποθέσεις του σχεδιασμού του ΥΥΚΑ;

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The Role of Mobile Technologies in Health Care Processes: The Case of Cancer Supportive Care

The Role of Mobile Technologies in Health Care Processes: The Case of Cancer Supportive Care | Patient Rights in Europe | Scoop.it
Kathi Apostolidis's insight:

As FierceMobileHealthcare reported earlier this month, a new report, from The Economist Intelligent Unit indicates that now is the time for mobile healthcare technology to move forward. The report surveyed 144 healthcare leaders working in public and private healthcare across a spectrum of healthcare industries, and predicts that consumers will drive mHealth efforts forward.

The same view is held by Eric Topol, director of the Scripps Translational Science Institute in San Diego. Topol has predicted that today's medical practice and overall healthcare industry will undergo a radical transformation in the next five years as mobile devices become more mHealth-friendly.

http://www.fiercemobilehealthcare.com/story/big-opportunity-cancer-care-mhealth-patients-must-drive-it-forward/2015-02-16?__scoop_post=4ea15ae0-503e-11e5-aca1-00221934899c&__scoop_topic=1085222#__scoop_post=4ea15ae0-503e-11e5-aca1-00221934899c&__scoop_topic=1085222

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Times "journeys" raise questions about editorial conflicts

Times "journeys" raise questions about editorial conflicts | Patient Rights in Europe | Scoop.it
In medicine and health, “partnerships” between media outlets and the institutions they cover can pose serious problems

 

The walls separating the news-gathering from the business side of many media companies have been eroding faster than their revenue streams. It’s commonplace for local television stations to havesweetheart deals with nearby medical centers, guaranteeing positive coverage of medical advances at the centers in exchange for large sums of money.  And local newspapers regularly partner with local businesses, including hospitals, usually for some kind of fee.  Whether this affects the quality of their news coverage is an open question, as far as the public is concerned.

But when it comes to medicine and health, such “partnerships” can pose serious problems.  I emailed Sullivan asking if, like the Overbye and CERN personalized tour, would “Gina Kolata or Larry Altman (two of the Times’ medical/health/science writers) offer tours of Sloan-Kettering, or Denise Grady (another Times’ medical writer) offer tours of Johns Hopkins, Mayo Clinic or even the CDC?”

Kathi Apostolidis's insight:

Doesn’t this create an odd set of optics that your principal beat reporter also serves as your paid tour guide to the people and facilities he covers?

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Caseous Swiss Medicine | Journal of Participatory Medicine

Caseous Swiss Medicine | Journal of Participatory Medicine | Patient Rights in Europe | Scoop.it

A medical student recounts a tense situation that occured in an inpatient setting because of the many "holes" in the "Swiss cheese" system...

Had the EMR notified us of Mr. Robertson’s protein C deficiency as we ordered the warfarin. this near-miss would have been avoided. But unfortunately, those two items were separated and could only have been connected if a user had gone through every record over the past decade for our patient. We go about our days receiving e-mail and social network notifications that keep us prepared, but some healthcare environments are remarkably analog. Notification systems for never-events such as these should be integrated into smarter EMRs.

Kathi Apostolidis's insight:

Ενδιαφέρον άρθρο για την ανάγκη λήψης λεπτομερούς ιστορικού του ασθενούς ή εξέτασης όχι μόνον του πρόσφατου ιατρικού φακέλλου αλλά του πλήρους φακελλου.. Στο άρθρο αυτό ο ασκούμενος φοιτητής ιατρικής μελέτησε το ιστορικό του ασθενούς και εντόπισε ότι προ δεκαετίας είχε διαγνωσθεί με έλλειψη πρωτείνης C  για την οποία απαγορεύεται η λήψη βαρφαρίνης...Ας σημειωθεί ότι ο ιατρικός φάκελλος του ασθενούς δεν είχε ενημερωθεί τα επόμενα χρόνια με τη πολύ σημαντική αυτή διάγνωση, που η άγνοια της από την ιατρική ομάδα μπορούσε να οδηγήσει σε πολύ σοβαρές συνέπειες για τον ασθενή....

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Is AI the Killer App for Cancer? | WIRED

Is AI the Killer App for Cancer? | WIRED | Patient Rights in Europe | Scoop.it

#maketechhuman Remember Watson, IBM’s supercomputing Jeopardy! champ and gourmet chef? It’s growing up. Watson skipped university and took a career as a super-elite MD deploying AI software and predictive analytics for research trials at blue-chip healthcare institutions. Yet Watson still needs a whole lot of schooling before making independent decisions and in the meantime, nurses and physicians have the final say. IBM, spotting this opportunity, has said it is investing $1 billion in a new cognitive-computing business division called Watson Healthcare Cloud.

Kathi Apostolidis's insight:

“The people who have the greatest chance to be successful through this machine learning revolution are those who are able to combine their area of expertise with the power of machine learning.” Jeremy Howard/Enllitic CEO

Jeremy Howard is realistic and  can't but agree with him that hi-tech alone is not sufficient for making decisions; human expertise, knowledge, compassion are the decisive factors of medical decision making.

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Efforts to Instill Empathy Among Doctors Is Paying Dividends

Efforts to Instill Empathy Among Doctors Is Paying Dividends | Patient Rights in Europe | Scoop.it

by Sandra G. Boodman

Force credits “Oncotalk,” a course required of Duke’s oncology fellows, for the unexpected accolade. Developed by medical faculty at Duke, the University of Pittsburgh and several other medical schools, “Oncotalk” is part of a burgeoning effort to teach doctors an essential but often overlooked skill: clinical empathy. Unlike sympathy, which is defined as feeling sorry for another person, clinical empathy is the ability to stand in a patient’s shoes and to convey an understanding of the patient’s situation as well as the desire to help.

Clinical empathy was once dismissively known as “good bedside manner” and traditionally regarded as far less important than technical acumen. But a spate of studies in the past decade has found that it is no mere frill. Increasingly, empathy is considered essential to establishing trust, the foundation of a good doctor-patient relationship.

Studies have linked empathy to greater patient satisfaction, better outcomes, decreased physician burnout and a lower risk of malpractice suits and errors.


Via Edwin Rutsch
Kathi Apostolidis's insight:

Eίναι η συμπάθεια ίδια με την συμπόνοια, ιδιαίτερα με τη συμπόνοια σε κλινικό περιβάλλον; Οχι μας εξηγεί ο συγγραφέας του άρθρου. Διακεκριμένα Παν/μια της Αμερικής ανέπτυξαν το μάθημα "ΟncoTalk" για να διδάξουν στους γιατρούς μια ουσιαστική αλλά παραμελημένη δεξιότητα: την κλινική συμπόνοια.

Στην Ελλάδα, εξ όσων γνωρίζω, ο Καθ. Χρήστος Λιονής προσπαθεί στο Πανεπιστήμιο Κρήτης. Με αφορμή το παράδειγμα των

Αμερικανικών Πανεπιστημίων αναρωτιέμαι για οι Ελληνικές Ιατρικές Σχολές δέν έχουν μεχρι σήμερα για την ανάπτυξη παρόμοιου μαθήματος; Μάλιστα θα πρότεινα να είναι υποχρεωτικό για την ειδικότητα της Ογκολογίας...

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New Analysis Reexamines The Value Of Cancer Care In The United States Compared To Western Europe

New Analysis Reexamines The Value Of Cancer Care In The United States Compared To Western Europe | Patient Rights in Europe | Scoop.it

Despite sharp increases in spending on cancer treatment since 1970 in the United States compared to Western Europe, US cancer mortality rates have decreased only modestly. This has raised questions about the additional value of US cancer care derived from this additional spending. We calculated the number of US cancer deaths averted, compared to the situation in Western Europe, between 1982 and 2010 for twelve cancer types. We also assessed the value of US cancer care, compared to that in Western Europe, by estimating the ratio of additional spending on cancer to the number of quality-adjusted life-years saved. Compared to Western Europe, for three of the four costliest US cancers—breast, colorectal, and prostate—there were approximately 67,000, 265,000, and 60,000 averted US deaths, respectively, and for lung cancer there were roughly 1,120,000 excess deaths in the study period. The ratio of incremental cost to quality-adjusted life-years saved equaled $402,000 for breast cancer, $110,000 for colorectal cancer, and $1,979,000 for prostate cancer—amounts that exceed most accepted thresholds for cost-effective medical care. The United States lost quality-adjusted life-years despite additional spending for lung cancer: −$19,000 per quality-adjusted life-year saved. Our results suggest that cancer care in the United States may provide less value than corresponding cancer care in Western Europe for many leading cancers.

Kathi Apostolidis's insight:

What is the real impact of expenditure in cancer care outcomes?

This is a key issue for ailing European healthcare systems. What are the key cost factors? The improved QaLYs in Europe may also be attributed to the different philosophy and approach to cancer care, however, despite successes in cancer care, there is no uniformity in cancer care spending and patient outcomes in all EU member states.There are big disparities among EU members states, as recently debated at "Europe of Disparities" event at the European Parliament, organized by ECPC and MEP Elizabetta Gardini http://www.ecpc.org/news-categories/policy-and-advocacy/132-ecpc-policy-initiatives-news/277-europe-of-disparities-press-release

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The cancer drugs patients are to be denied on NHS - Telegraph

The cancer drugs patients are to be denied on NHS - Telegraph | Patient Rights in Europe | Scoop.it
Thousands of cancer patients will be denied NHS drugs following a decision to withdraw funding for some life-extending treatments.
Kathi Apostolidis's insight:

Το Βρεττανικό Εθνικό Σύστημα  Υγείας δεν θα χρηματοδοτεί στο εξής τη διάθεση στους ασθενείς μερικών ογκολογικών φαρμάκων διότι κρίνει ότι το όφελος που παρέχουν είναι πολύ μικρό σε σχέση με άλλα φάρμακα για τις ίδιες ασθένειες που όμως έχουν χαμηλότερο κόστος.

 

Ως  βασικό κριτήριο λαμβάνεται η επιβίωση που προσφέρει κάθε φάρμακο σε σχέση με τη τιμή του και το ΝΗS θεωρεί ότι το κόστος των συγκεκριμένων φαρμάκων είναι πολύ υψηλό.

Τα εν λόγω φάρμακα είναι τα εξής γνωστά και στη χώρα μας Avastin, Perjeta, Kadcyla, Tyverb, Afinitor, Zaltrap, Halaven, Jevtana. Η απόφαση αυτή εγείρει πολλά ερωτήματα βιοηθικής όπως είχα αναφέρει σε σχετικό άρθρο στο blog μου στις 5 Νοεμβρίου (http://bit.ly/1wcmVES).

 

Στην Ελλάδα οι ασφαλισμένοι του EOΠΥΥ μπορούν να προμηθευθούν τα φάρμακα αυτά κυρίως από τα φαρμακεία του ΕΟΠΥΥ/Νοσοκομείων ή με την διαδικασία μέσω ΙΦΕΤ.

 

Η απόφαση του NHS αναμένεται να επηρεάσει και άλλα Ευρωπαϊκά συστήματα υγείας αλλά και να αποτελέσει μοχλό πίεσης πρός τις φαρμακευτικές εταιρείες σχετικά με τη τιμολόγηση των νέων φαρμάκων τους.

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Πολιτικές υγείας, κλινική έρευνα, κλινική πρακτική, εμπειρία ασθένειας

Αυτές τις ημέρες τυχαίνει να περιπλανιέμαι στις υπηρεσίες του ΕΟΠΥΥ για τον ίδιο τον εαυτό μου. Ελπίζω πως είναι κάτι προσωρινό αφορά όμως ένα πρόβλημα υγείας το οποίο είναι επίμονο και το κυριότερο μειώνει πάρα πολύ την καθημερινή λειτουργικότητά μου. Κατά τη διάρκειά αυτής της προσωρινής περιπέτειας μου έχουν περάσει πολλά πράγματα από το μυαλό μου, με βάση και την εμπειρία που είχα μέχρι στιγμής στην ζωή μου από το τομέα υγείας ..

Kathi Apostolidis's insight:

Ο Νίκος Παπαχρήστου είναι γνώστης του δημόσιου συστηματος υγείας αλλά και της τεχνολογίας στην υγεία..Το πρόβλημα υγείας που τον φέρνει σήμερα σε επαφή με τη γραφειοκρατία του ΕΟΠΥΥ και το ιδιωτικό σύστημα υγείας τον οδήγησε στο να σκεφθεί κατά πόσον η τεχνολογία πραγματικά εξυπηρετεί τις ανάγκες των ασθενών και υποστηρίζει τη βελτίωση των παρεχόμενων υπηρεσιών υγείας.

Η αναφορά στο άρθρο του ΒΜJ και στην ομιλία από το συνέδριο του Συλλόγου Καρκινοπαθών Κ.Ε.Φ.Ι. παρουσιάζουν δύο διαφορετικές πλευρές του θέματος.

Διαβάστε το άρθρο, ακούστε το βίντεο και σχολιάστε! Ποια είναι η δική σας άποψη για την τεχνολογία στην υγεία;

 

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Brittany Maynard’s Hope for a Better Death - The New Yorker

Brittany Maynard’s Hope for a Better Death - The New Yorker | Patient Rights in Europe | Scoop.it
According to figures from the Centers for Disease Control and Prevention, about a third of all Americans die in the hospital, but this number has been declining. While “death with dignity” campaigns make for arresting headlines, quieter campaigns for better palliative care are also challenging the use of prolonged medical interventions at the end of life. We have become accustomed to thinking of a wedding as an exercise in contrived perfection; for many of us, a wedding is the only opportunity we have to set the stage for an important transitional moment in our lives, and to enact that ritual in the manner we choose. But, increasingly, it seems likely that more of us will have the right and the responsibility to consider what we hope for, and how to render, our life’s consummation.
Kathi Apostolidis's insight:

Σύμφωνα με τα στοιχεία από τα Κέντρα Ελέγχου και Πρόληψης Ασθενειών, περίπου το ένα τρίτο των Αμερικανών πεθαίνουν στο νοσοκομείο, αλλά ο αριθμός αυτός έχει μειωθεί. Ενώ οι καμπάνιες για «θάνατος με αξιοπρέπεια"  κάνουν πρωτοσέλιδα, άλλες καμπάνιες πιο χαμηλών τόνων  για καλύτερη ανακουφιστική φροντίδα αμφισβητούν επίσης την προσφυγή σε παρατεταμένες ιατρικές παρεμβάσεις στο τέλος της ζωής. Έχουμε συνηθίσει να σκεφτόμαστε το  γάμο ως άσκηση σε σκηνοθετημένη τελειότητα, για πολλούς από εμάς, ο γάμος είναι η μόνη ευκαιρία που έχουμε για να σκηνοθετήσουμε μια σημαντική μεταβατική στιγμή στη ζωή μας, και να υλοποιήσουμε το τελετουργικό με τον τρόπο που έχουμε επιλέξει. Όμως, όλο και περισσότερο, φαίνεται πιθανό ότι περισσότεροι από εμάς θα έχουμε το δικαίωμα και την ευθύνη να σκεφθούμε το τί ελπιζουμε, και πώς να παρουσιάσουμε

το τέλος της ζωής μας.

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A Growing Disenchantment With October ‘Pinkification’

A Growing Disenchantment With October ‘Pinkification’ | Patient Rights in Europe | Scoop.it

“Breast cancer awareness,” critics charge, has become a sort of feel-good catchall, associated with screening and early detection, and the ubiquitous pink a marketing opportunity for companies of all types. For all the awareness, they note, breast cancer incidence has been nearly flat and there still is no cure for women whose cancer has spread beyond the breast to other organs, like the liver or bones.

“What do we have to show for the billions spent on pink ribbon products?” asked Karuna Jaggar, the executive director of Breast Cancer Action, an activist group whose slogan is “Think before you pink.”

She concluded: “A lot of us are done with awareness. We want action.”

Kathi Apostolidis's insight:

"Think before you pink""-"Σκέψου πρίν αγοράσεις ρόζ προϊόντα" Μάλλον ο ορισμός της ευαισθητοποίησης της κοινής γνώμης για το καρκίνο του μαστού θα πρέπει να γίνει από την αρχή. Η "ρόζ" καταιγίδα που έχει φθάσει από την Αμερική μέχρι τις εσχατιές της Ευρώπης, δεν σημαίνει τίποτε για τις χιλιάδες Ευρωπαίες ασθενείς που περιμένουν μήνες για εισιτήριο νοσηλείας, γι αυτές που περιμένουν 4-5 μήνες για ακτινοθεραπεία, για όσες δεν μπορούν να έχουν τα φάρμακα που χρειάζονται είτε γιατί είναι πολύ ακριβά, είτε γιατί είναι τόσο φθηνά που δεν αφήνουν κέρδος και δεν εισάγονται...

Tα ρόζ προϊόντα ωφελούν μόνον τους πωλητές τους..

 

 

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How being a young metster is like having AIDS in 1984

How being a young metster is like having AIDS in 1984 | Patient Rights in Europe | Scoop.it

.. I kept being struck by how similar the experience of being a young woman with metastatic breast cancer is to the experience of having AIDS early on in the crisis. Here’s my list of similarities...

Kathi Apostolidis's insight:

Καντο όπως το ΑCT UP! Kάντο όπως οι ασθενείς με ΗΙV το 84!

Οι ασθενείς με μεταστατικό καρκίνο του μαστού στην Αμερική αποφάσισαν να πάρουν την υπόθεσή τους στα χέρια τους!

Γιατί? Διότι ο καρκίνος του μαστού δεν είναι ρόζ κορδέλλες και πανηγύρια! Ο μεταστατικός καρκινος του μαστού είναι μια πολύ σοβαρή ασθένεια που απαιτεί έρευνα και θεραπεία.

Στις ΗΠΑ μόνον 7% της συνολικής χρηματοδότησης για την έρευνα για τον καρκίνο του μαστού πηγαίνει σε έρευνες για τον μεταστατικό καρκίνο του μαστού. Στην Ευρώπη????

 

Ο καρκίνος του μαστού που παραμένει στους μαστούς, δεν σκοτώνει, άν και μερικές από τις επθετικές θεραπείες για τα αρχικά στάδια του καρκίνου του μαστού είναι δυνητικά πολύ επικίνδυνες. Ο καρκίνος του μαστού γίνεται επικίνδυνος και δυνητικά θανατηφόρος,  όταν κάνει μετάσταση, δηλ. όταν εξαπλώνεται στα οστά, στον εγκεφαλο, στους πνεύμονες, στο συκώτι. Και παρά το γεγονός ότι υπάρχουν θεραπείες που παρατείνουν την επιβίωση των ασθενών με μεταστατικό καρκίνο του μαστού, δεν υπάρχει θεραπεία.

 

 

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Promoted tweets negatively impacting medical conferences - Articles - pharmaphorum

analysis of promoted tweets used by pharmaceutical companies at leading medical conferences, though, over 70 per cent of the engagement with promoted content was created by click-farming accounts – which pay people to click on tweets to artificially boost numbers – and not the conference attendees targeted. Yet, if promotions were so carefully aimed at certain hashtags, user profiles and keywords, click-farm accounts should not even be able to see these ads.

Regardless of whether you believe the bad version (no demand for advertising) or the worse version (users' resistance to promotion), Twitter users themselves are overwhelmed by the sheer volume of conversation on any chosen topic. They struggle to get their voices heard and find it hard to generate engagement with their tweets. The increased use of promoted tweets, and subsequent click-farm engagement, only makes the situation worse. Twitter is a great platform, but the business model is flawed. The advertising product (especially its targeting) is broken and abused by click farmers.

In the context of the healthcare conversation, promoted tweet campaigns risk drowning patient and healthcare providers' voices. With their large follower numbers, pharma companies' Twitter accounts are already the most powerful voices, in terms of reach and impressions, at many medical conferences. Pharma is usually also the only stakeholder in the conversation that can afford to pay money to promote its tweets. Engagement is thus artificially inflated, but because companies are ignorant of this fact and in competition for share of voice with one another, they will continue to promote their content.

Kathi Apostolidis's insight:

I have remarked this trend watching the analytings of the #ECC2015 on symplur.com. It's surprising that not a single person from the thousands of attendants is mentioned among influencers. Only pharma and oncology orgs are among 10 top twitterers. However, they are not the most interesting tweeple to follow in a congress..

There should be a tool to hinder twitter accounts using click farms to spam conference social media. Organizers should pay attention to it: if their timeline is spammed by promoted tweets, readers will not search further. They just leave the hashtag

 

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Spanish cancer patient gets a 3D-printed titanium rib cage

Spanish cancer patient gets a 3D-printed titanium rib cage | Patient Rights in Europe | Scoop.it
A cancer patient, suffering from a chest wall sarcoma, receives the first ever 3D-printed metal sternum and rib cage.
Kathi Apostolidis's insight:

Is there anything 3D printers can't do? A 54-year-old Spanish man, who had a cancerous tumor in his chest wall, was recently fitted with a 3D printed sternum and rib cage. While the first-of-its-kind implant seems like a Marvel Comics experiment with Adamantium, in reality, it was an ingenious, life saving medical solution that used lightweight yet sturdy, Titanium. The metal printing technique gave the surgeons at the Salamanca University Hospital in Spain the flexibility they needed to customize the complex and unique anatomy of their patient's chest wall.

They brought in Anatomics, a Melbourne-based company that manufactures surgical products, to help create and print the implant. Based on the patient's high-resolution CT scan data, the Australian team first created a 3D reconstruction of the patient's chest wall and tumor so that the surgeons could plan with precision. Next, they used the 3D digital CAD file detailing the patient's anatomy to build the customized implant, layer by layer, on Arcam's $1.3 million electron beam metal printer.

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Doctor Skeptic: Knee arthroscopy in arthritis: an evidence-practice mismatch

Doctor Skeptic: Knee arthroscopy in arthritis: an evidence-practice mismatch | Patient Rights in Europe | Scoop.it
Knee replacement surgery is major surgery so it is only reserved for those with severe osteoarthritis. So what do surgeons do with patients who have knee pain and mild or moderate arthritis? They often do an arthroscopy: a low risk, day-only procedure that pays well and seems to work some of the time. Hundreds of thousands are done in the US every year, and in my state the rate of arthroscopy is high and is rising. 

The trouble is: it doesn’t work. Most patients still have pain, some get worse, and about 20% will end up having a knee replacement within 2 years anyway.

Kathi Apostolidis's insight:
Knee replacement surgery is major surgery so it is only reserved for those with severe osteoarthritis. So what do surgeons do with patients who have knee pain and mild or moderate arthritis? They often do an arthroscopy: a low risk, day-only procedure that pays well and seems to work some of the time. Hundreds of thousands are done in the US every year, and in my state the rate of arthroscopy is high and is rising. 

The trouble is: it doesn’t work. Most patients still have pain, some get worse, and about 20% will end up having a knee replacement within 2 years anyway.

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BMJ Blogs: The BMJ » Blog Archive » Amy Price and Marilyn Mann on the pros of patient peer review

BMJ Blogs: The BMJ » Blog Archive » Amy Price and Marilyn Mann on the pros of patient peer review | Patient Rights in Europe | Scoop.it

The public at large is the end user of any healthcare intervention thus making it imperative that evidence guiding the use of healthcare interventions is relevant and useful to them. However the public, in general, is an underutilized source of research knowledge even though their practical input can build bridges and reduce barriers as well as influence the speed at which evidence is adopted into practice. A recent review shows patient experience to be positively associated with effectiveness when it is integrated with the research. Studies show that we learn more completely when the materials we use provide an interactive way to solve a problem or provide feedback. There is every possibility that patient reviewers can be influential agents of change for good at The BMJ.

Kathi Apostolidis's insight:

Το Βρεττανικό ιατρικό περιοδικό ΒΜJ-The British Medical Journal καλεί από πέρυσι έμπειρους ασθενείς (δεν έχω βρεί ακόμη μονολεκτική μετάφραση στη γλώσσα μας του όρου patient advocate και ακόμη δυσκολότερο να μεταφερθεί στα Ελληνικά το expert patient advocate...) να συμμετάσχουν ως ισότιμοι, με άλλους γιατρούς και ερευνητές, αναθεωρητές (peer reviewers) ερευνών και μελετών που αποστέλλονται στο περιοδικό για δημοσίευση.

Υπάρχει σκεπτικισμός όσον αφορά τη συμμετοχή των ασθενών ως αναθεωρητών επιστημονικών μελετών και ερευνών. Ποιά είναι η άποψή σας; Χρειάζεται η άποψη των ασθενών στα υπο δημοσίευση αποτελέσματα ερευνών; Τι μπορούν να προσφέρουν ως αναθεωρητές οι ασθενείς;

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Paying the Price: The Emotional Labour of Patient Leadership

I attended an hour’s workshop on the ‘future role of the patient’ at a big conference last week. For 45 minutes, the ‘facilitator’ held forth on new ways that healthcare organisations needed to ‘put patients at the centre of care’. He talked about dialogue, partnerships, empowerment, not once realising how ironic his didactic mode of delivery was. He talked about listening, yet talked and talked…

As my tide of frustration swept up from my toes, the nagging thoughts began. Should I say something? What should I say? How? Was it worth it? Did I want again to be the one to raise the patient flag? Was I a nag? Or could I say it with charm? And as I got more nervous, I felt less and less centred.

Kathi Apostolidis's insight:

...."We talk a lot in the patient movement about the need for support. This usually focuses on the practicalities – how much we should be paid, how access can be enabled, what information we get given. Rarely do we talk about the emotional consequences.

We do what we do because of our passion. That fuel gets us into exciting places. But I fear that many of my friends are burning out. With few spaces (online or offline) to support each other, little investment from professional leaders and even their own reluctance to say no (fearing the missed opportunity), the fuel tank empties. In some ways, some people are being abused all over again".....

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Do Cancer Patients Tweet? Examining the Twitter Use of Cancer Patients in Japan

Do Cancer Patients Tweet? Examining the Twitter Use of Cancer Patients in Japan | Patient Rights in Europe | Scoop.it

ABSTRACTBackground: Twitter is an interactive, real-time media that could prove useful in health care. Tweets from cancer patients could offer insight into the needs of cancer patients.

Objective: The objective of this study was to understand cancer patients’ social media usage and gain insight into patient needs.

Methods: A search was conducted of every publicly available user profile on Twitter in Japan for references to the following: breast cancer, leukemia, colon cancer, rectal cancer, colorectal cancer, uterine cancer, cervical cancer, stomach cancer, lung cancer, and ovarian cancer. We then used an application programming interface and a data mining method to conduct a detailed analysis of the tweets from cancer patients.

Results: Twitter user profiles included references to breast cancer (n=313), leukemia (n=158), uterine or cervical cancer (n=134), lung cancer (n=87), colon cancer (n=64), and stomach cancer (n=44). A co-occurrence network is seen for all of these cancers, and each cancer has a unique network conformation. Keywords included words about diagnosis, symptoms, and treatments for almost all cancers. Words related to social activities were extracted for breast cancer. Words related to vaccination and support from public insurance were extracted for uterine or cervical cancer.

Conclusions: This study demonstrates that cancer patients share information about their underlying disease, including diagnosis, symptoms, and treatments, via Twitter. This information could prove useful to health care providers.


Via Giuseppe Fattori
Kathi Apostolidis's insight:

Japanese cancer patients or those tweeting in Japanese may share information about their cancer experience on twitter, as is also the case in USA and

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EmmanuelGrunenberger's curator insight, March 23, 2015 1:11 PM

An example of observing how patients communicate about their diseases using social media... even in Japan.

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Francqui lecture Jan De Maeseneer ‘Primary Care in the European Union' | Expert panel

On 5 March 2015, Jan De Maeseneer (Chair Expert Panel) held in Antwerp his Francqui lecture on Primary Care in the European Union: an interactive Exploration with Members of the European Commission’s Expert Panel on Effective Ways of Investing in Health (EXPH).

After an introduction on the goal, composition and work of the EXPH, Jan De Maeseneer presented the EXPH opinion on Definition of a frame of reference in relation to primary care with a special emphasis on financing systems and referral systems. Martin McKee, Fernando Lamata, Walter Ricciardi and Werner Brouwer – all members of the EXPH – completed his speech with explaining the situation of primary care in their home countries England, Spain, Italy and The Netherlands.

Kathi Apostolidis's insight:

Μπορεί να μάθει η Ελλάδα από τα παραδείγματα ΠΦΥ άλλων Ευρωπαϊκών χωρών; Στη Ευρωπαϊκή Επιτροπή Εμπειρογνωμόνων για Αποτελεσματικές Επενδύσεις στην Υγεία (ΕΧPH) συζητήθηκε στις 5 Μαρτίου, η ΠΦΥ με έμφαση στα συστήματα χρηματοδότησης και παραπομπής ασθενών. Μπορείτε να ακούσετε τη διάλεξη εδώ http://bit.ly/1EA8Iv9

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BMJ Quality Blog #Smallthingsbigwins: Let’s teach quality improvement at medical school

BMJ Quality Blog #Smallthingsbigwins: Let’s teach quality improvement at medical school | Patient Rights in Europe | Scoop.it

For most medical students, formal teaching of quality improvement probably involves little more than identifying the differences between audit and research. Certainly for me it didn’t, but the rising question today is whether there is need for more than this in medical student education.....

....Having said that though, when I try to remember what I was taught about quality improvement as a medical student, I draw a fairly large blank. Now however I find it is a very active part of my practice and career. Clinical quality improvement is encompassed in the regular audits, and participation in morbidity and mortality meetings that must be every doctor’s aim. The more elusive organisational quality improvement is something that I am exposed to through a teaching program called ImERSE and my job as a clinical research fellow for patient and family centred care. ImERSE is a quality improvement and medical education tool developed and used at Alder Hey Children’s Hospital. It utilises patient shadowing as a method to capture qualitative care experience data that is thematically analysed to allow for regular feedback into service and quality improvement. The shadowing is undertaken by medical students in the surgical daycase unit, the accident and emergency department, and soon outpatients. The student is removed from any clinical responsibility and encouraged to think about the patient and their family as the centre of a care experience, considering how much the hospital and the care offered affect the psychology of the patient and their family.....

Kathi Apostolidis's insight:

Tι ακριβώς διδάσκονται οι Ελληνες φοιτητές Ιατρικής σχετικά με τη ποιότητα της κλινικής πρακτικής? Πόσες ευκαιρίες άσκησης έχουν στη διάρκεια των σπουδών τους? και στην ειδικότητα, υπάρχει θέση και χρόνος για την αξιολόγηση, τη μέτρηση, τη βελτίωση της ποιότητας της κλινικής πρακτικής?

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The heroic role of the caregiver in oncology - Focus - November-December-2014 Issue 63 - Cancer World - Shaping the future of cancer care

The heroic role of the caregiver in oncology - Focus - November-December-2014 Issue 63 - Cancer World - Shaping the future of cancer care | Patient Rights in Europe | Scoop.it

Doctors in Tel Aviv teamed up with a photojournalist to learn more about the role of the ‘unsung heroes’ who accompany relatives or friends through their cancer journey, often at a cost to their own mental and physical health, independence and income. The resulting photodocumentary aimed to raise awareness among the healthcare team, “because everyone involved benefits when team members understand the caregiving role and value the caregiver’s presence.”

How important is the role of caregivers in cancer care?Where do they fit in to patient-centred practice?Could patients and carers benefit from healthcare teams giving more recognition to the role of carers, and more open to inviting them to participate in an appropriate manner in the healthcare decision-making process?

You can look at the photodocumentary here.

Kathi Apostolidis's insight:

Oι "αφανείς ήρωες" της ογκολογικής περίθαλψης είναι οι περιθάλποντες συγγενείς και φίλοι. Χωρίς αυτούς, το μονοπάτι της θεραπείας είναι πολύ δύσβατο για τους ασθενείς...Όμως η συμβολή των περιθαλπόντων στις περισσότερες χώρες απλά δεν υπολογίζεται καθόλου,  παρά το ότι στη μακρά διάρκεια της ογκολογικής περίθαλψης συχνά οι περιθάλποντες επιβαρύνουν την σωματική και ψυχική τους υγεία... Ας εξετάσουν οι διοικήσεις των νοσοκομείων την προσφορά των περιθαλπόντων και τουλάχιστον κατά τη διάρκεια της νοσηλείας των ασθενών, άς κάνουν τα μικρά βήματα που χρειάζονται για να κάνουν λίγο πιο εύκολη τη ζωή των περιθαλπόντων...

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Hours to Days - Τι μπορούμε να κάνουμε τώρα;

Hours to Days - Τι μπορούμε να κάνουμε τώρα; | Patient Rights in Europe | Scoop.it

Her husband, four sons, and three daughters filled the room. She sat there, still, eyes closed, the pale yellow of advanced liver failure painted on every inch of her body. I took a seat next to her. Her head was held upright, cradled gently by one of her sons. His strong hands—one on her forehead, the other on the back of her skull—were placed as though praying over someone newly baptized. From her mouth, slightly open, came quiet and barely perceptible breaths—in, out. She was present and awake, while at the same time unable to hear or respond to anything that was happening in the room. -....


.....Her recent history was marked by a rather rapid decline over the past 2 months. Long dormant melanoma now spread widely. Her family filled the room. She sat there, still, eyes closed, the pale yellow of advanced liver failure painted on every inch of her body....

Kathi Apostolidis's insight:

Η διήγηση του Μatt Mumber, γιατρού ανακουφιστικής αγωγής, μου έφερε δάκρυα στα ματια καθώς θυμήθηκα παρόμοια συνάντηση με τον θεράποντα του πατέρα μου αλλά και την εξοργιστικά αδιάφορη στάση απέναντι στην ήδη "φευγάτη" μητέρα μου...Δεν αρκεί η ιατρική εκπαίδευση μόνον στην ογκολογία και την ανακουφιστική αγωγή... Χρειάζονται πολύ περισσότερα, συμπόνοια και αγάπη για τον πάσχοντα, μια ζεστή κουβέντα και ένα σφίξιμο του χεριού σ'αυτούς που μένουν πίσω, πρακτικές λύσεις για τα πολλά προβλήματα που φέρνει μαζί της η ασθένεια....Πως θα μάθουν οι νέοι γιατροί μια απάντηση ανθρωπιάς στη σύντομη ερώτηση "τί μπορούμε να κάνουμε τώρα;" με τα πολλά μή εκφραζόμενα....

 

 

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