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Handle with care: patient-centric market research - PMLiVE

Handle with care: patient-centric market research - PMLiVE | The patient movement | Scoop.it
Working with patients to gather insight aimed at transforming brand communications can be a delicate business
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wyke_190614.pdf

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My presentation at a medcommsnetworking event on patient perspectives on clinical trials other presentations can be found here http://www.medcommsnetworking.co.uk/event61.html

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Portugal Set to Introduce Its First Drug Consumption Room

Portugal Set to Introduce Its First Drug Consumption Room | The patient movement | Scoop.it
Portugal's capital city, Lisbon, has announced that it is exploring opening the country's first ever drug consumption room (DCR), a positive, though somewhat belated d
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Latest Facts & Figures Report | Alzheimer's Association

Latest Facts & Figures Report | Alzheimer's Association | The patient movement | Scoop.it
Get the latest Facts & Figures report, providing annual statistics on the impact of Alzheimer's disease and dementia. Learn how many Americans are living with the disease, economic and caregiver burden, death rate and other key measures.
PatientView's insight:
June, is Alzheimer's & Brain Awareness Month.
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Home

Home | The patient movement | Scoop.it
European Patients' Academy on Therapeutic Innovation (EUPATI) is project funded by the Innovative Medicines Initiative. The \"European Patients' Academy on Therapeutic Innovation\" (EUPATI) will provide scientifically reliable, objective, comprehensive information to patients on pharmaceutical R&D. It will increase the capacity of well-informed patients to be effective advocates and advisors, e.g. in clinical trials, with regulatory authorities and in ethics committees.
PatientView's insight:

Focus on the patients academy

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Spread Awareness

Spread Awareness | The patient movement | Scoop.it
75 years ago Lou Gehrig delivered his famous farewell speech. Within two years, he died from ALS at age 37. Read his and other ALS stories at ALSA.org/75 to support cutting-edge research to find treatments and a cure for ALS.
PatientView's insight:

ALS awareness month

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Childhood and adolescent cancer statistics, 2014 - Ward - 2014 - CA: A Cancer Journal for Clinicians - Wiley Online Library

Childhood and adolescent cancer statistics, 2014 - Ward - 2014 - CA: A Cancer Journal for Clinicians - Wiley Online Library | The patient movement | Scoop.it
PatientView's insight:

The International Brain Tumour alliance highlights, a report by the American Cancer Society for estimates of childhood (birth to 14 years) and adolescent (15 to 19 years) cancers in the USA in 2014 indicates that brain and CNS tumours are in second place (21%) in the childhood category and in third place (10%) in the adolescent category. The estimated number of cases was 2,780. In 2010 the estimated number of survivors of these tumours was 59,083.

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Year of the Brain in Europe in 2014

Year of the Brain in Europe in 2014 | The patient movement | Scoop.it
European Brain Council
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Just discovered 2014 is YEAR OF THE BRAIN

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"My blog has led to four people having a transplant that their medical teams didn't even know existed"

A short film about a Michael Seres (@mjseres), who is changing people's lives through awareness and social media.


Via Andrew Spong
PatientView's insight:

Nothing needs be said 

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Denise Silber's comment, March 1, 2014 8:11 AM
Come meet Michael Seres and Andrew Spong in Paris at Doctors 2.0 & You conference June 5-6, 2014
Denise Silber's curator insight, March 1, 2014 8:14 AM

Thank you Andrew for drawing our attention to the film about the amazing Michael Seres @mjseres whom we are so grateful to know. He will be back with us at Doctors 2.0 & You Paris, June 5-6, and involved in more than one activity.

 
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Rare Disease Day 2014 Feb 28

Rare Disease Day 2014 Feb 28 | The patient movement | Scoop.it
Today is #RareDisease Day, the day to put rare diseases in the spotlight! Show your solidarity today!
PatientView's insight:

Video for rare disease day

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Men United v Prostate Cancer

Men United v Prostate Cancer | The patient movement | Scoop.it
Men United V Prostate Cancer

We’re calling for men to join together in a movement against the
common enemy of prostate cancer. We want to get the message out
about one of the UK’s biggest man killers, support men affected by
it, and intensify the search for more reliable tests and treatments
for the future.

We’re asking YOU to sign for Men United
now by taking our quick test to see how much you know about
prostate cancer.



Watch our TV ad

We're calling for men to join together in a movement against the
common enemy of prostate cancer.
PatientView's insight:

A great campaign 

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Cancer Research UK - YouTube

Cancer Research UK - YouTube | The patient movement | Scoop.it
Cancer Research UK is the world's leading independent charity dedicated to cancer research. We carry our scientific research to help prevent, diagnose and tr...
PatientView's insight:

Great new add from Cancer Research UK but put sound on when you view

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Results: schizophrenia and social inclusion

Results: schizophrenia and social inclusion | The patient movement | Scoop.it

lusion Results from study to help understand social inclusion and People Living with Schizophrenia, which was conducted last year (July - September 2013) 140117 - Social Inclusion Research    

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Results of patient and carer survey on social inclusion and schizophrenia undertaken July-September 2013

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Alzheimer Europe - News - Policy Watch - Friday 30 May 2014 - World Dementia Council publishes statement of purpose

Alzheimer Europe - News - Policy Watch - Friday 30 May 2014 - World Dementia Council publishes statement of purpose | The patient movement | Scoop.it
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Melanoma Treatment Options: What is it Worth to Extend ONE Life? - YouTube

Stage IV melanoma patient, Patricia Garcia-Prieto shares her story and her struggle with stage IV melanoma -- and considers the cost benefit of extending her...
PatientView's insight:

How much is my life worth (to be worth saving)?

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Last chance to register for today's CCSN webinar on Setting the Advocacy Agenda!

Last chance to register for today's CCSN webinar on Setting the Advocacy Agenda! | The patient movement | Scoop.it
PatientView's insight:

Free introduction to advocacy on today;s webinar with Canadian Cancer Survivor Network 

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RITA

RITA | The patient movement | Scoop.it
The future of care for the elderly.
PatientView's insight:

trying to get my head round RITA

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Worldwide cancer mortality statistics : Cancer Research UK

Worldwide cancer mortality statistics : Cancer Research UK | The patient movement | Scoop.it
Worldwide cancer mortality statistics
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The extent of problem with cancer expertly visualized by @CRCUK

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Towards the patient revolution

Towards the patient revolution | The patient movement | Scoop.it

Fiona Godlee (@fgodlee) writes:

 

In an editorial last year we called for a patient revolution (doi:10.1136/bmj.f2614). We said that patients, far more than clinicians, understand the impact of disease and treatment. We said that clinicians and patients therefore needed to work in partnership if we are to improve healthcare. We talked about corruption in the mission of healthcare and the need to challenge deeply ingrained practices and behaviours. We said that we wanted to develop a strategy for patient partnership at the BMJ, that we planned to establish a panel of patients and clinicians to help us with this work—and that we would report back on progress.

 

Well, last week we held our first patient partnership workshop, and as Tessa Richards explains in her blog (bmj.com/blogs) we were humbled and inspired by the enthusiasm of the patients and patient advocates who came to help us advance the quest to make patient partnership a reality.

 

We expected to be challenged by the panel, and we were. Was this just eye candy for the BMJ, we were asked, a form of tokenism to help the journal look and feel good? Or were we serious in our commitment to change things at the BMJ so that we can campaign for a cultural shift in medicine? I hope we managed to convince those present that we are indeed serious.

 

We have made a small start by adding expert patients to the peer review process for selected research papers. And we plan to publish our draft strategy on patient partnership in the next three months. I expect this will incorporate many of the recommendations from the workshop. These included having a patient voice on all the committees that make decisions about the BMJ’s content and strategy, asking authors of research articles to explain how they involved patients in the design of their study, and having an expert patient as a coauthor on every clinical review.

 


Via Andrew Spong
PatientView's insight:

It has taken a long time to get here but it is wonderful you have arrived 

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Education of patients and patient advocates: EUPATI example

Education of patients and patient advocates: EUPATI example | The patient movement | Scoop.it

 t the informed scientist - breaking new congress lectures on your desktop

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How patients can get involved in research ... Jan is worth listening to, so have sound on 

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Can Doctors Be Taught How to Talk to Patients?

Can Doctors Be Taught How to Talk to Patients? | The patient movement | Scoop.it
Research suggests that physician communication about important topics is associated with a better quality of life for patients, but teaching communication skills to doctors is not easy.
PatientView's insight:

Interesting this topic made the New York Times 

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My Treatment My Choice - Tackling opioid dependency

My Treatment My Choice - Tackling opioid dependency | The patient movement | Scoop.it
My Treatment My Choice aims to empower and inform heroin-/opioid-dependent users and their families to help tackle this chronic medical condition
PatientView's insight:

An interesting new approach between patients, their representatives and medical suppliers 

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