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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.
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Focus on the patients academy

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#Fight4Treatment with David Suchet - YouTube

Families affected by Tuberous Sclerosis and Morquio Disease call for urgent access to medicines to protect health and save lives on behalf of hundreds of pat...
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Should have circulated earlier 

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Le bracelet Google qui détecte le cancer

Le bracelet Google qui détecte le cancer | The patient movement | Scoop.it

Aujourd’hui, le cancer est responsable de plus de 150 000 décès par an. Pourtant, un dépistage précoce permettrait d’augmenter les chances de guérison.

Cela fait un petit moment que Google investit dans la sante via son laboratoire Google X, spécialisé dans les technologies de rupture. La firme de Mountain View travaille d’ailleurs sur un bracelet et une pilule capables de détecter les cellules cancéreuses qui circulent dans le corps. Le porteur du bracelet doit ingérer des nanoparticules qui circulent dans le sang, détectent les cellules cancéreuses et s’y agrippent. Elles émettent alors une fluorescence détectée par le bracelet. Ces nanoparticules et ces cellules cancéreuses circulent ensuite jusque sous le poignet de l’utilisateur, attirées par un aimant contenu dans le bracelet. Il devient ainsi possible de détecter si le corps contient des cellules cancéreuses.


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NHS: Campaigners attack plans to share patients' personal data with taxman

NHS: Campaigners attack plans to share patients' personal data with taxman | The patient movement | Scoop.it
SCOTTISH ministers are considering opening up an electronic database 
of people registered with a GP to 
120 public bodies, including HM Revenue and Customs
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Another example of gov not helping the cause of big data

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PatientView's curator insight, February 22, 6:43 AM

Another example of gov not helping the cause of big data 

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To the woman who tutted at me using the disabled toilets...

To the woman who tutted at me using the disabled toilets... | The patient movement | Scoop.it
Dear lady who loudly tutted at me using the disabled loos, I know you saw me running in, with my able bodied legs and all. You saw me opening the door with my two working arms. You saw me without a...
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Thought this too important too overlook

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Portal launched by Waltham nonprofit promotes patient-centered multiple sclerosis research - The Boston Globe

Portal launched by Waltham nonprofit promotes patient-centered multiple sclerosis research - The Boston Globe | The patient movement | Scoop.it
Caroline Kyriakou is among the first group of patients that will be sharing their medical data and their ideas for new research directions with one another and with scientists through a new patient portal called iConquerMS. The national portal was formally launched Tuesday by a Waltham nonprofit organization called Accelerated Cure Project.
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More good ideas for co-creation with patients

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GenomeSeqWeek | Genetic Alliance UK | February 2015

GenomeSeqWeek | Genetic Alliance UK | February 2015 | The patient movement | Scoop.it
GenomeSeqWeek, four events in February 2015 exploring the impact of whole genome sequencing | sponsored by Genetic Alliance UK
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@GeneticAll_UK this has meaning for us all 

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1st Global Conference On Patient Centered Care

1st Global Conference On Patient Centered Care | The patient movement | Scoop.it
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1st Global Conference on patient centred care 

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Eric Topol on Twitter

Eric Topol on Twitter | The patient movement | Scoop.it
While the docs are away at AHA, the patients do better? http://goo.gl/y8GTHk Press release vs data @JAMAInternalMed pic.twitter.com/EuXpUGGXl9
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Reminds me of a Dartmouth study that found doctors would not submit to the same treatment they recommended patients 

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Resources | International Alliance of Patients' Organizations

Resources | International Alliance of Patients' Organizations | The patient movement | Scoop.it
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Tx @IAPOtweets 

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How pharma can create patient loyalty

How pharma can create patient loyalty | The patient movement | Scoop.it

Mega Trend #7: In the New Era of Quantified Self, Patients Want Pharma on Their Side

The business case for keeping “the healthy” healthy is undeniable. Consumers can now leverage technology and big data to monitor the state of their health and practice preventive measures. Yet a majority of healthcare resources are still devoted to treating the sick. With the fastest growing global age segment now 85+, “sickcare” is unsustainable.1, 2

There remain many misconceptions among patients over what health conditions individuals can fully control.1 Opportunities to educate and influence the public align with the desire to proactively manage health.

Patients are looking to pharma to provide select patient services, but have been severely underserved. However, those who receive such services place great value on them, and are willing to provide personal health information in order to receive free information and/or services.3 In addition, nearly three-quarters of patients in a recent focus group agreed that social media resources sponsored by, or created by, pharma would motivate them to talk with their doctors about specific pharma products.4

The “5 E’s” hold the key to understanding the dynamics and opportunities of digital engagement with patients5: the Internet is the ENABLER; ECONOMICS are the trigger; patients are EMPOWERED; patients ENGAGE; and patient EXPERIENCE drives the choice.

Consumers expect pharma to engage them in ways in which they are already accustomed. Pharma has tended to try a “one-size-fits-nobody” approach that runs counter to a patient-centric model that supports providers, retailers, payers, and, ultimately, patients.3, 6 Focusing on the individual patient experience – and the subsequent data resulting from this experience – serves the dual purpose of engaging patients and providing the analytics to support product benefit claims.

Making customers “smarter” during the purchase experience builds loyalty and provides differentiation in a crowded marketplace.7 Patient empowerment has replaced “Ask your doctor,” and data-based benefits provide a direct link between pharma and the end user.

Big data and digital health already provide meaningful insights for every stakeholder in the healthcare ecosystem, from linking cost and quality of care to health outcomes, to helping patients more actively manage their own health. The current lack of standardized formats presents a barrier to true, seamless implementation (interoperability), but there is no doubt that patients are more in charge than ever before.8, 9

The trend is a product of an evidence-based research study undertaken by the Pharmaceutical Division in Valtech to map the pharmaceutical landscape of digital mega trends. The research study provides essential insights on how Pharma companies could utilize digital engagement to break down stakeholder barriers, impact stakeholder behaviour and demonstrate more cost-effective outcomes. The research study is based on information from 100+ trusted sources and has resulted in the identification of 14 mega trends.

REACH OUT TO GAIN AN UNDERSTANDING OF HOW TO EXECUTE ON THE UNDERUSED DIGITAL OPPORTUNITIES

The Pharma Division in Valtech has developed an analytical framework that can identify the engagement potential of your brand. The analysis will provide you with answers to the following questions:

  • WHY should your product or therapeutic area have a relevant presence in a digital context?
  • WHO should your digital value proposition appeal to/engage and for what reasons?
  • WHAT changes in the stakeholder’s awareness/behaviour should the digital engagement enable?
  • WHEN during the patient pathway should the digital engagement take place?
  • WHERE – in which healthcare environment/context – should the digital engagement take place?
  • HOW should digital engagement be optimized via the utilization of state of the art digital assets?
  • What metrics should be implemented to measure IF digital engagement is successful?

Please contact Senior Digital Pharma Advisor Rasmus Rask for further advice or to set up an informal meeting.

If you want to read more about Mega Trend #7 you can download more information on valtech.dk.

Stay tuned for the upcoming blog post on Mega Trend #8: Achieving Long-term, Sustainable Growth Starts With Meeting Patient Expectations. And make sure you did not miss the previous blog posts on pharmaceutical mega trends:

Mega Trend #1: Pharmaceutical CEOs Lack Confidence to Act
Mega Trend #2: Transforming to a Digital Business: A Fundamental Paradigm Shift
Mega Trend #3: The “Trust” Gap: Leveraging Digital to Reconnect with Stakeholders
Mega Trend #4: Reinventing the Marketing Function for a Digital Environment
Mega Trend #5: Follow the 20-20-20 Rule for Digital Budgets
Mega Trend #6: Big Data, Mobile and Social Create a More Level Playing Field; Pharma is Slow to Respond

Sources:
1. Havas. (2012) My Body, Myself, Our Problem: Health and Wellness in Modern Times. www.havasworldwide.com
2. Vertic healthcare. Mads Krogh Petersen (2014). Are You Pre-disease or Healthy? www.vertic.com
3. Accenture. Shawn D. Roman et. al. (2014). Great Expectations: Why Pharma Companies Can’t Ignore Patient Services. www.accenture.com
4. Medical Marketing and Media. Ross Fetterolf et. al. (December 2013). Should pharma abandon social media? www.mmm-online.com
5. UCB. Lode Dewulf. (2014). The era of patient-centricity: Fashion or future?
6. Booz and Co. Ken Favaro et. al. (2014). Biopharma in 2014: Growth Is Back on the Agenda. www.booz.com.
7. Merck. Tyrone Edwards. (2014).Understand the direct link between client satisfaction and business performance- do we have the right sales model to deliver value in pharma? www.eyeforpharma.com
8. IBM.Heather Fraser et. al. (September 2013). Analytics across the ecosystem. A prescription for optimizing healthcare outcomes. www.ibm.com
9. Juice pharma. Ben Putman. (2014). Top 5 Health 2.0 Trends for Pharma 2014. www.juicepharma.com



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Diabetes puts economic growth at risk, says IDF - PMLiVE

Diabetes puts economic growth at risk, says IDF - PMLiVE | The patient movement | Scoop.it
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Latest forecasts on diabetes from IDF

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15 Influential ePatients and Patient Advocates to Follow

15 Influential ePatients and Patient Advocates to Follow | The patient movement | Scoop.it
Whether its public speaking, blogging, or tweeting, these empowered ePatient & patient advocates are changing the way we think about our role in healthcare.
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And many many more ...

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When Interests Align: Partnering with Patients Associations

12th annual 3-day global conference covering all aspects of commercial pharma, the go-to pharma event
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Preventing Deaths in Detention of Adults with Mental Health Conditions | Equality and Human Rights Commission

Preventing Deaths in Detention of Adults with Mental Health Conditions | Equality and Human Rights Commission | The patient movement | Scoop.it
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"Is anyone there?" Is your online health community a ghost town?

"Is anyone there?" Is your online health community a ghost town? | The patient movement | Scoop.it

Colleen Young writes: "If you want to build a thriving community, focus on the people, help them connect and get them talking. To be successful, a community needs activity."


Via Andrew Spong
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agree with andrew S an important lesson for e-communities

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Andrew Spong's curator insight, February 24, 9:04 AM

A great post from expert community management practitioner, Colleen Young. Make sure you don't miss the comments, too.

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Homeopathy, measles and the reign of unreason - FT.com

Homeopathy, measles and the reign of unreason - FT.com | The patient movement | Scoop.it
I read an angry new book this week. Edzard Ernst’s A Scientist in Wonderland alleges that his Exeter university unit, dedicated to research into complementary medicine, was closed because Prince Charles did not like its conclusions — particularly
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More patients need to be in the frontline says the FT

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Social networking patient expectations

As social networking is examined in the broader context of the health care field, and specifically the field of pharmacy, it is important to consider the persp…

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The evolving role of patient advocates at medical congresses

The evolving role of patient advocates at medical congresses | The patient movement | Scoop.it
Organisers of medical conferences should include patient advocates on the podium and in the audience as their direct experiences of diseases and treatments can provide greater understanding, leading to improvements in drugs and care. I want to talk...
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Inside the Brain: Unraveling the Mystery of Alzheimer's Disease [HQ] - YouTube

This 4-minute captioned video shows the intricate mechanisms involved in the progression of Alzheimer's disease in the brain. http://www.nia.nih.gov Permissi...
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What do patients and carers want from health apps? #health2eu #hcsmeu

What do patients and carers want from health apps? #health2eu #hcsmeu | The patient movement | Scoop.it
Visit the post for more.

Via Lionel Reichardt / le Pharmageek, Olivier Delannoy, Clara Hamelin
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COM SALUD's curator insight, November 11, 2014 3:53 AM

La tecnología ha dejado de ser un obstáculo para los pacientes, incluso para los mayores, debido a la generalización de los smartphones y a los dispositivos wearables, que se integran en la ropa y complementos, y que no necesitan conocimientos tecnológicos del usuario para poder monitorizar la salud y comunicarse con los profesionales sanitarios. En el I Congreso de Wearables y Big Data en Salud se presentarán ejemplos de esta tecnología intuitiva y útil para pacientes crónicos o dependientes, así como para quienes apuestan por la prevención.

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Access Our Medicine Initiative | Affordable Medicine

Access Our Medicine Initiative | Affordable Medicine | The patient movement | Scoop.it
Everyone should have access to affordable medicine - declare it. Sign the declaration.
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Just came across this site via MS International 

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'Patient engagement': a pernicious, presumptive powerplay?

'Patient engagement': a pernicious, presumptive powerplay? | The patient movement | Scoop.it
There is a subtle form of power-politics implied in just about every deployment of ‘patient engagement’ you’re likely to encounter that in my opinion serves to deprive the patient of authority rather than promote the autonomy of the patient. http://sco.lt/8XIpxx
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