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1745-6215-15-62.pdf

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UK study shows Patient Information Leaflets do not

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29,000 voices backed our petition, but the NHS is still going ahead with their proposed plans

29,000 voices backed our petition, but the NHS is still going ahead with their proposed plans | The patient movement | Scoop.it
We handed in our ‘Don’t delay funding for vital new drugs and treatments' petition to NHS England, to urge them to reconsider plans for a new spending cap on treatments. We received an incredible 29,006 signatures, but unfortunately the outcome wasn’t what we hoped for.
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Disappointment for prostate cancer patients in the UK

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Marking World Cancer Day | Scoop News

Marking World Cancer Day | Scoop News | The patient movement | Scoop.it
Health Minister Jonathan Coleman says World Cancer Day is an opportunity to focus on what more can be done to further improve cancer services.
PatientView's insight:

What are you doing on #WorldCancerDay? here's the NZ view 4 starters ...

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PatientView's curator insight, February 3, 5:05 PM

What are you doing on World Cancer Day (Feb 4)? Here's the NZ view  4 starters

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#ILoveMyBrain

#ILoveMyBrain | The patient movement | Scoop.it
I just supported #ILoveMyBrain on @ThunderclapIt // @EU_Brain
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European Brain Council new Campaign "I Love my Brain"

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A tribute to Andrew Wilson, Rarer Cancers Foundation - Beating Bowel Cancer

A tribute to Andrew Wilson, Rarer Cancers Foundation - Beating Bowel Cancer | The patient movement | Scoop.it
We pay tribute to Andrew Wilson, CEO of the Rarer Cancers Foundation, who passed away on Monday 11 July.
PatientView's insight:

Just heard about Andrew Wilson's death .... back in July ...SAo sad he was a pioneer

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Information on medicinal products - EUPATI

Information on medicinal products - EUPATI | The patient movement | Scoop.it
Information on medicinal products is provided to patients and healthcare providers in different ways.
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Patient engagemennt with patiennt information @eupatients

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frankly.net | Home

frankly.net | Home | The patient movement | Scoop.it
PatientView's insight:

Interesting website funded by @BayerPharma for people with haemophila

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WHAT CHARITY CEOS WANT FROM GOVERNANCE REVIEW

See https://www.linkedin.com/pulse/what-do-charity-ceos-want-from-governance-review-karen-addington

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All this could make NGOS more robust and trusted

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Clinical Trials Doctors Demand Ownership Of Patients' Data

Clinical Trials Doctors Demand Ownership Of Patients' Data | The patient movement | Scoop.it
A group of clinical trials doctors announce, in a position paper in the New England Journal of Medicine, that they should have complete ownership of patients' data, basically forever, so that they can publish as many papers as they like. They even demand that other scientists pay them some undetermined amount of money in order to get access to the data, and even then they want a delay of up to five years. Nowhere do they mention any concern for the patients.
PatientView's insight:

@Sdenegri tx for this alert! But who does own patient clinical data?

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NCB statement on the Childhood Obesity Strategy | NCB

NCB statement on the Childhood Obesity Strategy | NCB | The patient movement | Scoop.it
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Statement from National Children’s Bureau on UK gov's latest plans to tackle obesity ...

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On the RaDAR – Rare Disease Advocacy and Research

On the RaDAR – Rare Disease Advocacy and Research | The patient movement | Scoop.it
PatientView's insight:

More about the work of John Forman in rare diseases in NZ

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World Iron Awareness Week – Haemochromatosis International

World Iron Awareness Week – Haemochromatosis International | The patient movement | Scoop.it
PatientView's insight:

Check out their app on myhealthapps.net

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Rescooped by PatientView from CORPORATE REPUTATION-THE PATIENT PERSPECTIVE
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You Are What You Eat: 80% of Patient Advocacy Groups Take Money from Drug and Medical Industries

You Are What You Eat: 80% of Patient Advocacy Groups Take Money from Drug and Medical Industries | The patient movement | Scoop.it
NPQ sometimes finds that a particular field of nonprofit enterprise shows an overwhelming involvement in questionable practices that hold the potential to betray those they are organized to serve. Patient advocacy is one of those fields.
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PatientView's curator insight, March 31, 4:31 AM

Pharma funding and patient groups ... a month old.. but patient grps still responding

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Patient-Reported Indicators Survey (PaRIS) - OECD

Patient-Reported Indicators Survey (PaRIS) - OECD | The patient movement | Scoop.it
Data and research on health including biotechnology, cancer, health care, health spending, health insurance, fitness, dementia, disability, obesity, smoking, genetics and mortality., We need to better understand what the patients themselves think of health care. The OECD is a global leader in collecting, reporting and benchmarking health system performance and health care quality indicators and OECD's Patient-Reported Indicators Survey (PaRIS) will address critical information gaps and build a patient-centred view of health system performance.
PatientView's insight:

OECD launches its own Patient Reported Indicatots survey (PaRIS) comparing countries

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ATTN: all patient groups – Looking for ways to improve pharma’s patient centricity?

ATTN: all patient groups – Looking for ways to improve pharma’s patient centricity? | The patient movement | Scoop.it
Why not participate in this PatientView study about 2016/2017? - the questionnaire is available in 16 languages Danish | Dutch | English | Finnish | French | German | Greek | Hungarian | Italian | Japanese | Korean | Portuguese | Polish | Spanish | Swedish | Turkish (for online links to the questionnaire the…
PatientView's insight:

For patient groups only!!

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1 voto, 200.000 aiuti concreti - ilMioDono

1 voto, 200.000 aiuti concreti - ilMioDono | The patient movement | Scoop.it
UniCredit offre 200.000€ da destinare alle Organizzazioni Non Profit. Decidi tu con il tuo voto a chi devolvere una parte della donazione!
PatientView's insight:

How to run a petition exemplar by @Cittadinanzatti - Costa zero

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Patient Engagement for Medicines Development in a nutshell

Patient Engagement for Medicines Development in a nutshell | The patient movement | Scoop.it
Who are we? A truly global partnership that synergizes the patient engagement efforts across the lifecycle of medicine. Become a partner.
PatientView's insight:

Great initiative!!

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PatientView's curator insight, November 16, 2016 1:28 PM

Great initiative!!

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Who's not sharing their clinical trial results?

Clinical trials should share their results - but not all do. Explore our data to find out who isn't.
PatientView's insight:

An extraordinary tale of unpublished clinical data for industry and academia ... yet access to clinical data is at the top of most patient groups agenda

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The Power of the Empowered Patient [Video]

The Power of the Empowered Patient [Video] | The patient movement | Scoop.it
Dave deBronkhart talks about the critical role of the empowered patient in clinical care and medical education.
PatientView's insight:

More on patient involvement and health literacy

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Ryan Gosling Offers You the Chance to Visit the Set of Blade Runner // Omaze

Ryan Gosling is in Budapest filming the Blade Runner sequel and he’s inviting you (and not Omaze) to join him. Enter for your chance to meet Ryan an
PatientView's insight:

Ryan Gosling, Imerman Angels, Blade Runner and a one day window??

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I've Got You (Under My Skin) - The Songaminute Man

Read more about our story: www.justgiving.com/songaminute ; www.twitter.com/songaminute
PatientView's insight:

New one for Corben's carpool Karaoke Songaminute Man, singing with Alzheimer's to keep in touch

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Patients Call Some Health States 'Worse Than Death' in Study

Patients Call Some Health States 'Worse Than Death' in Study | The patient movement | Scoop.it
More than half of seriously ill, hospitalized patients ranked death better than bowel and bladder incontinence and dependence on a ventilator, but the findings shouldn't be taken literally, said a coauthor.
PatientView's insight:

Why QoL is so important

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