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

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The fight against waste in health services at the center of the 10th European Day of Patients' Rights

The fight against waste in health services at the center of the 10th European Day of Patients' Rights | The patient movement | Scoop.it
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Civic patient groups fight medical wastage

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Cancer charities criticise NICE's 'last-century methodology' - PMLiVE

Cancer charities criticise NICE's 'last-century methodology' - PMLiVE | The patient movement | Scoop.it
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Once again patient groups and NICE clash

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World Down Syndrome Day 2016 - ITALY - #MyFriendsMyCommunity

Down Syndrome International presents a global video journey promoting inclusion of people with Down syndrome. "My Friends, My Community" features interview
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Andrew Herxheimer (4 November 1925 – 21 February 2016)

Andrew Herxheimer (4 November 1925 – 21 February 2016) | The patient movement | Scoop.it
Andrew Herxheimer was a champion of evidence-based medicine and founder of the Drugs and Therapeutics Bulletin.
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Thanks for all your support Andrew

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World Kidney Day advocates for access to prevention and treatment of kidney disease for all children worldwide

World Kidney Day advocates for access to prevention and treatment of kidney disease for all children worldwide | The patient movement | Scoop.it
Author: Luca Segantini, Executive director of the International Society of Nephrology Tomorrow, 10th of March, we celebrate World Kidney Day.
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Stop op bezuinigingen op patiëntenorganisaties

Stop op bezuinigingen op patiëntenorganisaties | The patient movement | Scoop.it
Minister Schippers en staatssecretaris Van Rijn van VWS zetten een rem op de bezuinigingen van patiënten- en gehandicaptenorganisaties
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Cutback for patient groups in the Netherlands

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A new educational toolbox on medicines research & development

www.eupati.eu - European patient groups and patient advocates are invited to use the toolbox to discover the latest educational resources, to educate and train patient…
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At last an explanation of what drug R&D is about for those who see it all as a black box

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We Love Life Diabetes

We Love Life Diabetes Building a community led self care toolkit together
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Loved their slogan

"When "I" is replaced with "We" even illness becomes wellness"

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PatientView study on biosimilars presented at European Commission workshop

PatientView study on biosimilars presented at European Commission workshop | The patient movement | Scoop.it
On 6 October 2015 the European Commission´s  Directorate General for Internal Market, Industry, Entrepreneurship and SMEs (DG GROW), organized a workshop on Access to and Uptake of Biosimilar Medicinal Products. The objective of the workshop were to gather all relevant interested parties in order to facilitate a multi-stakeholder exchange of information, experiences and reflection on…
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Annick Valentin Smith's curator insight, December 16, 2015 1:29 PM

SURVEY RESULTS :

Little awareness of biosimilars among patients

Little understanding of biosimilars among patients

Need for clear, understandable patient-focused information

Patient groups and internet are  the two most important sources of information for patients

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Junior doctors' strike: what do the experts think?

Junior doctors' strike: what do the experts think? | The patient movement | Scoop.it
Junior doctors are due to start a series of strikes starting on December 1st, with two days of full walk-out on December 8 and December 15th. The controversial plans for the first such action in the history of the NHS have sparked a wide range of views
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Patient Association on the forthcoming junior doc strike in UK

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Roche bemoans price distortion and 'Big Bad Pharma' attacks - Articles - pharmaphorum

Roche bemoans price distortion and 'Big Bad Pharma' attacks - Articles - pharmaphorum | The patient movement | Scoop.it
Roche bemoans price distortion and 'Big Bad Pharma' attacks - Articles Just how much does Kadcyla cost in the UK? Roche tells Andrew McConaghie that inaccurate reports of its price have distorted the debate.
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And here is Roche's response to teh call to cut drug prices

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34% of Kids Eat Fast Food on a Given Day, Study Says

34% of Kids Eat Fast Food on a Given Day, Study Says | The patient movement | Scoop.it
New federal data reveal that in 2011-2012, more than one third of kids and adolescents ate fast food on a given day
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World Hepatitis Alliance supports UK member in fight for patient rights | World Hepatitis Alliance

World Hepatitis Alliance supports UK member in fight for patient rights | World Hepatitis Alliance | The patient movement | Scoop.it
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Another patient group clash with the NHS

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Take Action: For many patients and their families, advocacy... : Neurology Now

Take Action: For many patients and their families, advocacy... : Neurology Now | The patient movement | Scoop.it
An abstract is unavailable.
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MS International Federation to update the Principles for Quality of Life | MS International Federation

MS International Federation to update the Principles for Quality of Life | MS International Federation | The patient movement | Scoop.it
Collaborative work has begun to update the ‘gold standard’ for quality of life
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Is it an industry or a movement we are creating?

Is it an industry or a movement we are creating? | The patient movement | Scoop.it
In his Guardian blog yesterday, Dick Vinegar, asks a genuinely good question:  'Who is fighting the patient's corner?' He writes about his recent attendance at a Westminster Health Forum conference about Healthwatch, and voices concern that all we are doing is creating just another bureaucracy in the name of patients.  A thick, muddy, layer of…
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"But I do fear that we are at times in danger of creating an industry that reflects the interests of its managers and owners, rather than the social movement – a group of people with a common ideology who try together to achieve certain general goals – that I hear many people aspire too. " SImon's comment is something we all need to heed

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The patient’s view on brain imaging: European Federation of Neurological Associations | Blog

The patient’s view on brain imaging: European Federation of Neurological Associations | Blog | The patient movement | Scoop.it

The ESR spoke with Donna Walsh, executive director of the European Federation of Neurological Associations (EFNA) about how her organisation supports patients with brain disorders and how well patients are informed about the role of radiology in...

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About EFNA

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THE GLOBAL JOURNAL

THE GLOBAL JOURNAL | The patient movement | Scoop.it
Everywhere, non-governmental organisations (NGOs) are changing the world; making it a better and more habitable place for everyone.
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Just came across this ... interesting how health features highly

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18 THINGS MENTALLY STRONG PEOPLE DO WITH FOUR SPORT PSYCHOLOGY HIGHLIGHTS | Portland Sport Psychology

18 THINGS MENTALLY STRONG PEOPLE DO WITH FOUR SPORT PSYCHOLOGY HIGHLIGHTS | Portland Sport Psychology | The patient movement | Scoop.it
Do you mentally rebound after a missed shot or poor first round?
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What a great summary of mental well-being has wider implications than just sport

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How a top Republican became a champion for the NIH

How a top Republican became a champion for the NIH | The patient movement | Scoop.it
Oklahoma Republican Tom Cole had little connection to health care policy before being appointed to lead a panel that funds medical research programs.
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AGE General Assembly and Annual Conference 2015 looked at a human-rights based approach to ensure dignified ageing - AGE Platform Europe

AGE General Assembly and Annual Conference 2015 looked at a human-rights based approach to ensure dignified ageing - AGE Platform Europe | The patient movement | Scoop.it
AGE Platform Europe is a European network of around 150 organisations of and for people aged 50+; representing directly over 28 million older people in Europe.
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"2016 may see more rights for patients ..

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OPEN INNOVATION AT JANSSEN : “Nobody can solve today’s major healthcare problems alone”

OPEN INNOVATION AT JANSSEN : “Nobody can solve today’s major healthcare problems alone” | The patient movement | Scoop.it
a visit at the Janssen pharmacy R&D centre in Val De Reuil - Open Innovation - Janssen Healthcare Innovation - JLABS
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lets add patient groups to the slide

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https://www.youtube.com/watch?v=2Ilb9UhrGe0

https://www.youtube.com/watch?v=2Ilb9UhrGe0 | The patient movement | Scoop.it
What mental health services are there? And how do they fit in with other health and public services? Watch our animation to find out more. Every year, one in four of us will experience a mental health problem. The experience will be different for each of us, as will the type of support we need.
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Great little video fromKong'sFund on mental health

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Breast cancer charity calls on Roche to drop price of Kadcyla - News - pharmaphorum

Breast cancer charity calls on Roche to drop price of Kadcyla - News - pharmaphorum | The patient movement | Scoop.it
Breast cancer charity calls on Roche to drop price of Kadcyla - News Roche is being called on to drop the price of its breast cancer drug Kadcyla in the UK so that patients can keep receiving the treatment. The drug is set to be 'de-listed' from England's
PatientView's insight:

More on cancerdrugs and pricing - this time it is Roche's Kadcyla

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