mHealth in cancer supportive care
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mHealth in cancer supportive care
how can mobile technology help patients during and post acute phase of cancer treatment
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The Women Who Showed Their Breast Cancer Scars

The Women Who Showed Their Breast Cancer Scars | mHealth in cancer supportive care | Scoop.it

It’s never easy to find a patient willing to speak openly about a health issue. In this case, the topic was deeply personal and we needed photos. 


One of the toughest challenges of being a medical reporter is persuading a patient to speak openly about a health issue. In this case, the topic was deeply personal. I was writing about women who had decided against breast reconstruction after mastectomies. They call it “going flat,” and I decided to pursue the story after seeing a video on Facebook in which two women bare their flat chests and scars after breast cancer.


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Why Do Oncologists Give Chemo at the End of Life? 

Despite the effort of major organizations, including the Institute of Medicine and the American Society of Clinical Oncology (ASCO), to put more emphasis on palliative care for cancer patients, data suggest that chemotherapy use in the last 2 weeks of life may actually be increasing in the United States.[1]..........
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The main analysis was performed with data from a national French hospital-based registry, including about 280,000 patients, that were used to calculate the rates of chemotherapy and targeted therapies in the last 3 months of life. Seventy percent of the patients were over 60 years of age; in 30% of the cases there was a palliative care unit in the facility. 

 The results deserve attention: 
About 40% of patients received chemotherapy in the last 3 months of life, 
20% in the last month of life, and 
11% in the last 2 weeks of life. 

About 7% of the patients started or resumed a therapy in the last month of life. The following characteristics were associated with an increase in chemotherapy rates in the last month of life: 
Patient-related factors, including male sex, young age, and fewer comorbidities; 
Tumor location, specifically head and neck, lung, breast, and gynecologic cancers; 
and Institutional factors, including higher overall volumes of chemotherapy given and private facilities.
Kathi Apostolidis's insight:
Αναρωτιέμαι άν έχει γίνει παρόμοια έρευνα και στη χώρα μας για τη χορήγηση χημειοθεραπείας και στοχευμένων θεραπειών στους τρείς τελευταίους μήνες ζωής ασθενών με καρκίνο. Βέβαια στη χώρα μας δεν έχουμε Μητρώα από τα οποία να αντλήσουμε σχετικά στοιχεία, αλλά ίσως θα βοηθόύσε σε αυτό η ηλεκτρονική συνταγογράφηση. Η εμπειρική αντίληψη είναι ότι και στη χώρα μας χορηγείται ΧΘ τους τρείς τελευταίους μήνες ζωής. Πως σχολιάζουν το άρθρο οι Ελληνες Ογκολόγοι, η ΕΟΠΕ, η ΗΔΙΚΑ;
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I help repurpose everyday drugs like aspirin to fight cancer

I help repurpose everyday drugs like aspirin to fight cancer | mHealth in cancer supportive care | Scoop.it

Specialist drugs are getting outwitted by cancer. Pan Pantziarka says a solution may be right under our noses


What are the main challenges you face getting repurposed drugs approved to treat cancer? The patents have expired on the majority of the drugs, so any drug company that invests in a clinical trial is not guaranteed to recoup that money because some other manufacturer could swoop in and sell the same drug at a lower price. Also, if the trial is successful, getting the drug licensed costs money. Secondly, very few of these drugs are going to be effective on their own: we are looking at using them in combination with standard therapies or other repurposed drugs. In that situation multiple companies are involved, which raises issues around cooperation. If you are doing a trial without a pharmaceutical company, there are logistical issues: you have to buy the drugs yourself and even cheap drugs aren’t that cheap. You also have to package up the placebo and the drug – so you have highly paid consultants shoving aspirin into unmarked containers.

Kathi Apostolidis's insight:
When it’s someone’s life at stake, people do extraordinary things – and for good reason.
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Patients can offer so much more than just feedback

Patients can offer so much more than just feedback | mHealth in cancer supportive care | Scoop.it

Patient leaders have experience of life changing illness, injury or disability and can influence change through working in partnership. They must be involved in the leadership task itself, says Alison Cameron and colleagues.

...

Despite discussing patient leadership in depth and putting forward practical suggestions, the reportstated only that: “Patients clearly need to be much more intimately involved in the design of current and future services. But we have rejected the suggestion that a ‘chief patient officer’ or equivalent should be appointed to the board of every NHS organisation.

“That feels to us tokenistic, and begs the question of which sort of patient. Ticking a box that says ‘we have a patient representative’ will not bring about the close involvement of patients at all levels in service design that is needed.”

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The NHS Five Year Forward View declares that the NHS must “engage with communities and citizens in new ways”; the Berwick report called for engagement from “ward to board” and the King’s Fund states “organisations such as the Centre for Patient Leadership stress the importance of seeing patient leaders as a resource for change”.

In the US, Stanford Medicine X programme has the hashtag #everyoneincluded putting patients on an equal footing in the co design, planning and delivery of the programme including at board level. President Barack Obama recently held a meeting at the White House for leaders of change in healthcare and within the list, but in equal proportion, were patients.

In the UK, the report’s dismissal of a “chief patient officer” has been superseded by those with clearer vision. The King’s Fund now has two patient leaders as associates, the British Medical Journal has a patient editor and Sussex MSK Partnership has appointed a patient director (David Gilbert was named one of HSJ’s Patient Leaders for 2015) with real influence and strategic oversight.

Kathi Apostolidis's insight:

The story about the Chief Patient Officer, is an excellent picture on how the health establishment views patients in leadership roles in healthcare design and how patients argue the controversy between words and deeds of health care policy makers. When the world moves fast and patients claim to have roles they deserve,  the health care policy makers in many EU countries still cannot understand how things have changed from back in the 70s...

It happens that I personally know Mark Seres, an exceptional expert patient, who did not become expert in his complicated health care, because he did not have anything else to do but because for him it is a matter of life or death. As it is for many of us, facing a critical diagnosis, then, unless we strive to learn as much as we can about our disease, note how we react to treatments, take care of all that happens around us, we cannot walk safely the strenuous pathways of life threatening disease.

I would add to the examples given that of good friend e-Patient Dave de Bronkart, a renal cancer survivor, who was invited to Mayo Clinic in the capacity of a professor in medicine to teach interns!! 

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Η Ελλάδα υστερεί στην πρώιμη ανίχνευση του καρκίνου του παγκρέατος - Υγεία - Ειδήσεις - Πολιτική Υγείας - in.gr

Η Ελλάδα υστερεί στην πρώιμη ανίχνευση του καρκίνου του παγκρέατος - Υγεία - Ειδήσεις - Πολιτική Υγείας - in.gr | mHealth in cancer supportive care | Scoop.it
Ο πρώτος Ευρωπαϊκός πίνακας Κατάταξης για τον Καρκίνο του Παγκρέατος (European Pancreatic Cancer Index- EPCI), ο οποίος δημοσιοποιήθηκε από τον Ερευνητικό Οργανισμό Health Consumer Powerhouse (HCP) με έδρα στη Σουηδία, καταλήγει στο συμπέρασμα ότι, παρόλο που ο καρκίνος του παγκρέατος ευθύνεται για τον ίδιο σχεδόν αριθμό θανάτων με τον καρκίνο του μαστού, τα συστήματα υγειονομικής περίθαλψης δεν τον λαμβάνουν σοβαρά υπόψη. 

 «Με δεδομένη την εξαιρετικά δύσκολη οικονομική συγκυρία, η Ελλάδα θα πρέπει να επικεντρωθεί στα βασικά όσον αφορά την υγειονομική περίθαλψη για τον καρκίνο του παγκρέατος: την εκπαίδευση των ιατρών με σκοπό την έγκαιρη ανίχνευση του καρκίνου και την παρακολούθηση των βασικών δεδομένων στο πλαίσιο της θεραπευτικής αντιμετώπισης», επισημαίνει ο Δρ Αρνε Μπτζορνμπεργκ, επικεφαλής στην κατάρτιση των πινάκων κατάταξης του HCP. «Η ανεπαρκής τεκμηρίωση, ένα 'κλασικό' πρόβλημα της ελληνικής υγειονομικής περίθαλψης, παρακωλύει την αποτελεσματική αντιμετώπιση του καρκίνου. 

Η μη παρακολούθηση της απόδοσης οδηγεί σε αποπροσανατολισμό. Στην Ελλάδα, η πρόληψη και η πρόσβαση σε φαρμακευτικά σκευάσματα φαίνεται να συνεχίζουν να λειτουργούν, αλλά η παρηγορητική και ανακουφιστική αγωγή παρουσιάζει προφανώς μια θλιβερή εικόνα», συμπληρώνει. 

 Ο καρκίνος του παγκρέατος έχει δικαιολογημένα τη φήμη του «σιωπηλού δολοφόνου». Κατά γενικό κανόνα, ανιχνεύεται πολύ αργά, γεγονός που καθιστά τη θεραπεία σχεδόν αδύνατη. Οι ιατροί χρειάζονται καλύτερη εκπαίδευση για την πρώιμη ανίχνευση της νόσου. Ο καρκίνος του παγκρέατος αποτελεί την τέταρτη σημαντικότερη αιτία θανάτου από καρκίνο στην Ευρωπαϊκή Ένωση και ευθύνεται για το θάνατο περισσότερων από 100.000 Ευρωπαίων κάθε χρόνο. Σε αντίθεση με άλλες μορφές καρκίνου, ο αριθμός για τη συγκεκριμένη νόσο συνεχίζει να αυξάνεται! Ο πρώτος Ευρωπαϊκός πίνακας Κατάταξης για τον Καρκίνο του Παγκρέατος (European Pancreatic Cancer Index- EPCI), ο οποίος δημοσιοποιήθηκε από τον Ερευνητικό Οργανισμό Health Consumer Powerhouse (HCP) με έδρα στη Σουηδία, καταλήγει στο συμπέρασμα ότι, παρόλο που ο καρκίνος του παγκρέατος ευθύνεται για τον ίδιο σχεδόν αριθμό θανάτων με τον καρκίνο του μαστού, τα συστήματα υγειονομικής περίθαλψης δεν τον λαμβάνουν σοβαρά υπόψη. «Με δεδομένη την εξαιρετικά δύσκολη οικονομική συγκυρία, η Ελλάδα θα πρέπει να επικεντρωθεί στα βασικά όσον αφορά την υγειονομική περίθαλψη για τον καρκίνο του παγκρέατος: την εκπαίδευση των ιατρών με σκοπό την έγκαιρη ανίχνευση του καρκίνου και την παρακολούθηση των βασικών δεδομένων στο πλαίσιο της θεραπευτικής αντιμετώπισης», επισημαίνει ο Δρ Αρνε Μπτζορνμπεργκ, επικεφαλής στην κατάρτιση των πινάκων κατάταξης του HCP. «Η ανεπαρκής τεκμηρίωση, ένα 'κλασικό' πρόβλημα της ελληνικής υγειονομικής περίθαλψης, παρακωλύει την αποτελεσματική αντιμετώπιση του καρκίνου. Η μη παρακολούθηση της απόδοσης οδηγεί σε αποπροσανατολισμό. Στην Ελλάδα, η πρόληψη και η πρόσβαση σε φαρμακευτικά σκευάσματα φαίνεται να συνεχίζουν να λειτουργούν, αλλά η παρηγορητική και ανακουφιστική αγωγή παρουσιάζει προφανώς μια θλιβερή εικόνα», συμπληρώνει. Ο καρκίνος του παγκρέατος έχει δικαιολογημένα τη φήμη του «σιωπηλού δολοφόνου». Κατά γενικό κανόνα, ανιχνεύεται πολύ αργά, γεγονός που καθιστά τη θεραπεία σχεδόν αδύνατη. Οι ιατροί χρειάζονται καλύτερη εκπαίδευση για την πρώιμη ανίχνευση της νόσου. Ο καρκίνος του παγκρέατος αποτελεί την τέταρτη σημαντικότερη αιτία θανάτου από καρκίνο στην Ευρωπαϊκή Ένωση και ευθύνεται για το θάνατο περισσότερων από 100.000 Ευρωπαίων κάθε χρόνο. Σε αντίθεση με άλλες μορφές καρκίνου, ο αριθμός για τη συγκεκριμένη νόσο συνεχίζει να αυξάνεται! Οι περισσότεροι ασθενείς που διαγιγνώσκονται με καρκίνο του παγκρέατος θα πεθάνουν μέσα στον πρώτο χρόνο από τη διάγνωση.
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Tweeting to Health: A Novel mHealth Intervention Using Fitbits and Twitter to Foster Healthy Lifestyles

We developed a mHealth intervention, “Tweeting to Health,” which used Fitbits, Twitter, and gamification to facilitate support for healthy lifestyle changes in overweight/obese (OW) and healthy weight (HW) young adults. Participants tracked activity and diet using Fitbits and used Twitter for messaging for 2 months. Physical activity, dietary intake, and Tweets were tracked and participants completed surveys at enrollment, 1 month, and 2 months. Descriptive statistics were used to examine steps/day, physical activity intensity, lifestyle changes, and total Tweets. Participants were on average 19 to 20 years old and had familiarity with Twitter. OW participants had on average 11 222 daily steps versus 11 686 (HW). One-day challenges were successful in increasing steps. Participants increased fruit/vegetable intake (92%) and decreased their sugar-sweetened beverage intake (67%). Compliance with daily Fitbit wear (99% of all days OW vs 73% HW) and daily dietary logging (82% OW vs 73% HW) and satisfaction was high.
Kathi Apostolidis's insight:
The age of the participants, 19-20year olds, and familiarity with internet and applications is among the factors of success of the intervention. Remains to be seen the response of other, older age groups.  
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“Think, think, think”: message to European Cancer Patients Coalition AGM | e-Patient Dave

“Think, think, think”: message to European Cancer Patients Coalition AGM | e-Patient Dave | mHealth in cancer supportive care | Scoop.it

View mHealth presentation to ECPC Annual General Meeting on Vimeo. This is a quick first post to get this online before the meeting finishes. I hope to add

I’m in Brussels at the AGM (Annual General Meeting) of the European Cancer Patients Coalition, an association of over 400 cancer patient organizations. They are organized, they’re methodical, they’re action-oriented, working on health policy, drug development processes, patient involvement in clinical trials, and anything else in the patient’s interest. I was invited by Mrs. Kathi Apostilidis, vice president of ECPC and a long-time member of the Society for Participatory Medicine. She is also known as a force of nature.

The slides are available for viewing and download on SlideShare. More later.

 

Via rob halkes
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rob halkes's curator insight, June 6, 2016 10:04 AM

Great slide deck from Dave the Bronchart (@e-patientdave)and even greater insights from his reflection added to the presentation from his hotel room!

He juxtaposed:

  1. the very need patients have to learn about their condition(s) and about what could be done about it. Also indicating the effect of this learning process: patients being experts on their own condition and so be the ideal co-producers of new research, both in formulating hypotheses and in design the research;
  2. And, a more fundamental point: how to judge new outcomes of medical studies when new insights turn “facts” into new lights and appear to be not as ever lasting as the research project would indicate.

 

We surely need to rethink both medical practice and medical research.
“Think, think, think!” is indeed an upgrade of “let patients help” into a new and more fundamental level ;-)

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mHealth in Europe: Next steps

mHealth in Europe: Next steps | mHealth in cancer supportive care | Scoop.it
To follow up on the mHealth Green Paper, the European Commission has started paving the way for an industry-led Code of Conduct for mobile health apps. This initiative was presented during an mHealth
Kathi Apostolidis's insight:

#mhealth has still a long way to go but it is advancing ahead with leaps,the Code of Conduct should reflect the views of key stakeholders not only industry

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