Patient Self Management
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Breast Cancer Patients Have Their Say in a New Data Visualization - GE Healthcare News

Breast Cancer Patients Have Their Say in a New Data Visualization - GE Healthcare News | Patient Self Management |
A new GE Healthcare data visualization on patient experience and breast cancer reveals why women avoid regular mammograms, what variables affect patient pain levels during a scan and what hospitals can do to improve patient experience.
Adam's comment, September 4, 2012 1:51 AM
i like your post.thanks for the insightful posting.thanks
<a href="">Washington Home care</a>
Patient Self Management
patient self management, compliance, adherence, patient coach, patient monitoring, patient empowerment, shared decision making, patient education, patient counseling, participatory care
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Ensuring a Secure Environment for Participatory Medicine | Society for Participatory Medicine

Ensuring a Secure Environment for Participatory Medicine | Society for Participatory Medicine | Patient Self Management |

Keith Maddox

Unlike many members of Society for Participatory Medicine (S4PM) who have championed collaborative technology to improve patient outcomes and treatment for years, I am a relatively new proponent. Indeed, my experience in healthcare security, privacy and compliance only became a focus of my career when I joined the Computer Task Group, LLC (CTG) as a senior security consultant in 2012.

In that position, I was quickly immersed when I took over as interim Chief Information Security Officer at a large county hospital. I soon became aware that the adoption of security and privacy controls that were routine and standard in the financial industry were lacking in healthcare, especially at smaller hospitals and clinics. Across the board, budgets for healthcare IT were earmarked for new technology for patients and administrators, not security. Resources allocated for compliance with HIPAA safeguards were minimal, at best.

Around the same time, my colleague at CTG and the Editor-in-Chief of the S4PM newsletter, John Hoben, introduced me to Eric Topol’s book, “The Creative Destruction of Medicine.” It was an eye opener for me. I attended HIMSS in 2014 and 2015 and as I have learned more it is clear to me that patients and their advocates will be the ones to drive many of these new innovative technologies forward.

At the same time, new threats to healthcare security have not only eroded confidence that patient privacy can be protected; ransomware and potential hacks of medical devices endanger patients’ lives, not just their privacy. It’s no longer just about securing the EHRs.

It is critical that those of us who advocate for the goals of the Society for Participatory Medicine and the technologies necessary to bring about profound improvement in patient care help lead the way in promoting leading standards of security and privacy. Most importantly, as patients we need to insist that fundamental security practices are in place and that privacy of patient data is designed into solutions. [...]



rob halkes's insight:

Indeed, Patient self management demands for a supporting context, in two ways:
- Digitally, rather the more easier to realize, although Keith Maddox signifies the relevance of digital security.

- But also the personal context of physical persons both professional and from empathetic friends, peers and family. It is the integration and the functional design of the process, the interactions, interventions accessibility and availability of these contacts that needs the lot of attention to realize!

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Who truly represents the patient perspective? – Cancerworld

Who truly represents the patient perspective? – Cancerworld | Patient Self Management |

Who truly represents the patient perspective?

By Simon Crompton

In CancerWorld September / October 2016 2016, 18-21.


As researchers, regulatory bodies and health systems give patients more of a voice in consultation and decision making, advocacy groups are questioning what it really means to represent the patient view.

Nothing about us without us. So goes the mantra of patient organisations around the world, asserting their right to have a say in health decision-making.

Five words that make patient involvement sound so simple. But a growing body of patient and cancer organisations are asserting that it’s anything but simple: the whole idea of ‘patient representation’ is flawed and needs a re-think, they say.

Conventional models of patient representation bring risks. For some committees, companies and organisations, having a patient on the panel simply means they can tick the patient involvement box and move on. At least that’s the view of Deb Maskens, founder of Kidney Cancer Canada and Vice Chair of the International Kidney Cancer Coalition (IKCC).

“It’s far too easy for health technology assessment organisations or pharmaceutical companies to say that they have a patient on their committee and therefore they have had patient input,” she says. [..]

And then there’s the question of how ‘representative’ patient ‘representatives’ can actually be. Several European patient organisations have become concerned about the number of committees where one or two firmly established patients are there to represent all cancer patients – even in discussions that relate to a type or stage of cancer entirely different from their own. That situation, says Maskens, is “absolutely ludicrous”. 

Bettina Ryll, founder of the Melanoma Patient Network Europe, Chair of ESMO’s patient advocacy working group and a patient representative on many committees, agrees. As long as patients on committees are expected to represent the views of hundreds of people whose experiences may be entirely different from their own, they are in a very vulnerable and ineffective position.

“It’s very very difficult to be representative. I’m fed up with being challenged about this wherever I go. People say: ‘Yes, but how representative are you anyway?’ and this is a very easy way to take out the patient perspective if it’s not convenient. It’s an especially pressing issue because not everyone in health systems is happy with patient voices becoming more integrated into health decision-making. Undermining difficult patient views happens very frequently, and in the end, just the ‘yes-sayers’ are left over. That’s not sufficient.”

Those who represent patient interests in complex technical discussions are also vulnerable to criticism. Discussions on the relative risks and benefits of specific drugs, for example, may require some expert knowledge from the patient representative. But people with that degree of understanding are then accused of no longer being representative of most patients. “It’s a double bind,” says Ryll. “You can’t win.”
Evidence-based advocacy

But there may be a way forward. A growing number of patient advocacy groups are adopting the idea of ‘evidence-based advocacy’ to replace conventional ideas of ‘representation’. It involves letting go of any expectation that one patient should be able to represent everyone. Instead, patients on groups or committees gather, filter and convey information about the patient perspective on a particular issue from a variety of sources. They become a conduit for evidence from the relevant patient community, not a narrator of personal experience or opinion.

“I don’t in any way want to take away from the value of people conveying their personal narratives,” says Maskens. “But patient representatives now need to be equipped with a new skill set.

“Those on established committees should have to have an ear to the ground of what is happening in that disease space. There are thousands of people online in some form, and so before a review decision comes up, patient representatives can take a deeper dive into that patient community – listening to them, asking open-ended questions.

Read on... ! HERE




rob halkes's insight:

From "ePatient" up to "evidence-based patient advocacy: Progress is seen in how patient are (getting) represented. Ever since 2009/10 some patients made themselves known as "epatients" on social media to indicate their willingness and drive to speak as representative of patients with a specific condition.

Patient Advocacy groups took up this idea and forwarded patients among their midst. "Patients Inside" became a certificate for conferences in which participation of patients was organised and guaranteed. The idea is now introduced to use the term "evidence based" patient advocacy in which "representatives" "hear" their peers about some issue of interest and then forward the "data" to meaningful information for whoever wants to know.. It is a positive add on to the skills and channels patients have to forward their opinions, experiences and preferences!

rob halkes's curator insight, October 5, 9:47 AM

From "ePatient" up to "evidence-based patient advocacy: Progress is seen in how patient are (getting) represented. Ever since 2009/10 some patients made themselves known as "epatients" on social media to indicate their willingness and drive to speak as representative of patients with a specific condition.

Patient Advocacy groups took up this idea and forwarded patients among their midst. "Patients Inside" became a certificate for conferences in which participation of patients was organised and guaranteed. The idea is now introduced to use the term "evidence based" patient advocacy in which "representatives" "hear" their peers about some issue of interest and then forward the "data" to meaningful information for whoever wants to know.. It is a positive add on to the skills and channels patients have to forward their opinions, experiences and preferences!

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Free White Paper: Patient Engagement Trends

Free White Paper: Patient Engagement Trends | Patient Self Management |

Patient Engagement:
Programs Boost Care Plan Adherence, Behavioral Health a Barrier

Transformational patient-centered models emerging post-ACA are designed to succeed with a core of engaged, activated patients, yet enlistment of individuals in chronic care management, telehealth and other health enhancement interventions continues to challenge the healthcare industry.

While more than 60 percent of healthcare organizations report that their patient engagement programs have elevated patient satisfaction, care plan adherence and overall quality metrics, populations with low health literacy or behavioral health conditions are more resistant to efforts to engage them in self-care.

These findings were among the benchmarks identified by an inaugural survey on Patient Engagement by the Healthcare Intelligence Network. The August 2015 survey also determined that 79 percent of respondents are striving to improve patient engagement, employing an arsenal of tactics and e-tools.

Download this free Ebook for more data on:

The top barrier to patient engagement;

The role of patient portals in patient engagement,

Tools used to engage patients and much more.

Click here to download the report today.

This white paper is an excerpt from 2015 Healthcare Benchmarks: Patient Engagement,
For more information, click here:


rob halkes's insight:

Patient engagement, patient centered care and many other terms in which patients get the front seat in healthcare, are an obvious hype. Talking morally about it is no challenge, but realizing patient centered care or participatory care, as well as co-creating care with them, is indeed a challenge to many.
ehealth and telemedicine provides a road map for development

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Wearable technology - What do consumers imagine in the future?

Wearable technology and the internet of things - recent report by Ericcson.

See the download report here:


Key findings:
Wearables become the most personal devices

  • Two in five users of wearables say they feel naked when not wearing their device, with a quarter even sleeping with it on
  • Despite this, a quarter of those who have bought wearables in the past three months say their expectations have not been met
Consumers predict the wearables inflection point to be beyond 2020
  • 6 out of 10 smartphone users are confident that wearables will have uses beyond health and wellness
  • Consumers predict that most wearables ideas will only become mainstream beyond 2020. However, current users of wearables believe the development will be much faster
Wearables manufacturers as personal data brokers
  • 70 percent of users of wearables perceive wearables manufacturers to be very serious about protecting their data. In fact, users of wearables are more likely to share their data with wearables manufacturers than with doctors, insurance companies and internet companies
A new role for smartphones in the wearables future
  • 43 percent of those surveyed believe smartphones will be replaced by wearables, while 40 percent of smartwatch users already interact less with smartphones today. As wearables get smarter, the smartphone may become a secondary screen
Internet of Things (IoT) future shaped by wearables
  • 74 percent believe multiple wearables and sensors will help them interact with other devices and physical things around them, whilst 1 in 3 smartphone users believes they will wear at least 5 wearables beyond 2020. Thus, a setback in wearables adoption might delay the overall adoption of the IoT among consumers
rob halkes's insight:

There is still a long way to go to make wearables the new watch, self evident and always with you. But the stage of innovators is now indeed on the break to  early adoption and will grow to majority! Key segments? Gadget lovers ('quantified self') and patients who feel supported by their wearables. In my opinion wearables are a better proposition than 'just' apps.

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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 | Patient Self Management |

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.

rob halkes's insight:

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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Taking a participatory approach to development and better health. Examples from the Regions for Health Network (2015)

Taking a participatory approach to development and better health. Examples from the Regions for Health Network (2015) | Patient Self Management |
This publication documents the experiences of participatory approaches for development and better health taken by Region Skåne (Sweden) and three other regions, described in case studies: the Autonomous Province of Trento (Italy), the Autonomous Community of Andalusia (Spain) and Wales (United Kingdom).
rob halkes's insight:

Participatory Care Examples by WHO

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Respecting patients is associated with more patient-centered communication behaviors in clinical encounters - Patient Education and Counseling

Respect is associated with positive and patient-centered communication behaviors during encounters.
rob halkes's insight:

Respect is associated with positive and patient-centered communication behaviors during encounters.

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New Website on Medications: Iodine

New Website on Medications: Iodine | Patient Self Management |

- Find what works - information about medications

from medical experts - and people like you.

Side effects, reviews, tradeoffs, and tips about thousands of drugs, built from clinical research and real life experience from people like you.

The database, which launched In September last, uses Google surveys to get consumer information on a wide variety of both over-the-counter and prescription drugs.

Users can search a specific drug from Aleve to Xanax and see how people generally feel about its efficacy, about the side effects from actual users, tradeoffs, comments from users, warnings, costs, and a readable versions of the drug’s package insert.

Iodine uses Google Consumer Surveys, of which they have 100,000 ones completed, and they add to their website every day. Iodine also uses data from clinical research, pharmacist surveys, adverse event reports made to the Food and Drug Administration (FDA) and the National Average Drug Acquisition Cost (NADAC)–which reports the average wholesale price pharmacies pay for over 20,000 drugs.

See also here and here

rob halkes's insight:

"Iodine" looks like a sharp curator of information on Medications.

It is actually a database on information about medications both from the research/medical site and from the users/patients' site: experiences and opinions. In the presentation of the data, there is a  partition between sources of information.

It's just only English and US based. A nice example to what is possible on information about medication to users!

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Data for health - Blog by Susannah Fox

Data for health - Blog by Susannah Fox | Patient Self Management |

Last week I was part of the first community meeting for Data for Health, a program sponsored by the Robert Wood Johnson Foundation. It was held in Philadelphia on October 30 [..].

You can catch up on the #data4health tweets thanks to Symplur — and there were some good ones [..]

Once again I was struck by how wide open the definition of “data” can be. I shared the following data points, based on a Pew Research study I led:

  • 7 in 10 U.S. adults track a health indicator for themselves or someone else.
  • Half track regularly, half track when something comes up.
  • Technology plays a minor role — about 1 in 5 trackers use a medical device, an app, or any other digital tool.
  • 1 in 3 trackers uses paper and pencil to take notes.
  • Fully half of trackers say they do so in their heads (and that includes me).
  • 1 in 3 trackers share their data with family members or clinicians, but many do not. They are asking secret questions and we must not only respect that, but build it into our planning.
  • 45% of U.S. adults live with a chronic health condition; of those, 8 in 10 track some aspect of health.
  • Tracking data is not a hobby for this group, but rather a way to see themselves more clearly. This might be true of public health in general — data is a mirror we try to use to make good decisions, based on facts.


My favorite insight of the day came from someone who, when discussing who should be part of the design process for health data systems, said that front desk workers are the ones who know the community best.

Read the full blog here !

ALso be sure to see the Pew study here

rob halkes's insight:

Indeed, so many people do track some health parameters themselves: the "ground" for many interest in health apps. But when it comes to relate with these data to their "formal" health care providers, .. we get into a complete other realm. It seems even to be so that patients try to avoid this exchange. .. So many things need to be accommodated at the site of the ...

indeed, the providers, of course.
One of the implications of ehealth.
(see for instance here )

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The Wearable Future: Will Consumers Make the Move Soon?

The Wearable Future: Will Consumers Make the Move Soon? | Patient Self Management |
Is that an app you're wearing or are you just happy to track your progress? This adulteration of Mae West's classic come-on is most likely justified.

Just Just recently, International Data Corporation issue the prediction that wearable device shipments worldwide would rise more than 488.9 percent between 2014 and 2018, rising from 19.0 million to 111.9 million.

It’s a rapidly changing marketplace.

“There’s been talk recently about the future of notifications on such devices, fashion brands such as Tory Burch and Diane von Furstenberg (DVF) have partnered with tech companies to make wearables more stylish, and GE is testing Google Glass to see how the technology could help boost efficiency in its car factories,” reports eMarketer.

So far, it appears that people like using mobile health and fitness apps to get in shape — and that wearables will be the next rung on the ladder.

Polling by Makovsky Health and Kelton Research in March documented high interest in wearable health and fitness devices: 81 percent of U.S. internet users said they would use one. Tracking fitness was the top reason, cited by 48 percent. Monitoring personal health issues came in second, and tracking diet and nutrition ranked third.

But developers could be waiting a while before the trend becomes widely accepted. A June, 2014 Opera Mediaworks study showed that only 2.5 percent of smartphone users said they used wearable fitness and activity trackers while exercising. Wearables may be the future, but “do-all smartphones are still No. 1 when exercisers need to pump it up,” eMarketer asserts.

rob halkes's insight:

Insiders in patients' preferences are prudent in asserting patients' wilingness to use health applications. It is suggested that patients like best those mhealth apps and/or wearbales that they "can keep to themselves", without 'formal' oversight by professionals or their physicians. For the time being it seems they want to be sure that their data are shared at that moment they themselves decide to do so. This also explains patients' reservations to spontaneously use PHR ro demand insight into their EHR's. Sharing needs trust.

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10 Lessons From Empowered Patients - USNews

10 Lessons From Empowered Patients -  USNews | Patient Self Management |

They've been there – and here's what you can learn from their experiences.

It’s your body – your tests, your treatment.

Your disease. But grasping control of your patient experience, when you’re surrounded by white coats and intimidating medical lingo and scary diagnoses, can be hard. U.S. News talked to 10 people who have a lot of experience being patients – or have advocated for a patient – about the most important lessons they’ve learned about patient empowerment. Their responses:

  • AnneMarie Ciccarella
  • Trisha Torrey
  • Alexandra Albin
  • Ben Heywood
  • Matt Cavallo
  • Marisa Zeppieri-Caruana
  • Jullia Hallisy
  • Dave deBronkart
  • Kerry Sparling
  • Tiffany M. Peterson

See them all here !

rob halkes's insight:

10 Lessons from empowered patients. Check them out!

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Medication management goes digital

Medication management goes digital | Patient Self Management |
Medication management for patients, as well as their physicians and pharmacists, is going digital.

Much of this is driven by the changing demographics of patients and today’s health care providers, says Nancy Green, managing principal, healthcare, of  Verizon Enterprise Solutions.

“Patients want technology that they are familiar with, and so does the younger generation of physicians,” Green says. “A CEO of a major health care organization recently went to his CIO and said, ‘Whatever IT the doctors or patients want, give it to them. Make it happen. I don’t care how.’”

Since doctors provide the billable services for hospitals, and patients (or their insurance companies) pay for them, this scenario is playing out all over the U.S. [...]

“Being able to present patient-centered information by way of a web-based graphic interface would likely provide the information and answers that many demand,” says Dr. Mark Leavey, an internist who sees patients at Lutherville Personal Physicians in Lutherville, Md., a satellite of Mercy Medical Center.

“Clearly, the paper printout supplied with medications by pharmacies may have all of the information, but it is presented in a form that is a challenge for any but the most well-versed to read.” 

Scanning a QR code directs users to information portals that display the prescription data in layers, with the most direct and basic facts first, followed by commonly asked questions and a video of proper ways to use the medication. [...]

“The system also includes an application that users can download on their phone or tablet for use in helping with chronic conditions by managing their taking of medications or monitoring other health-related tasks they must perform daily,” Hart said....

rob halkes's insight:

"They must perform daily .."  Sure! We need to focus at medication management, but: it will still be an issue as to what would be the best way to do it. We still don't know too much about how patients perceive and experience well intended interventions to their compliance. There's a thin line between facilitation and interference, yes, even the feeling of being meddled around with..
So, as we know: technology is just one, but making the right use of it for all parties concerned is definitely another matter.

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"Patient Engagement" in Health Care: Literature Review | Journal of Participatory Medicine

"Patient Engagement" in Health Care: Literature Review | Journal of Participatory Medicine | Patient Self Management |
The term "patient engagement" is at risk of becoming a vague buzzterm, as it lacks a shared definition. This paper aims to pinpoint the key conceptualizations of "patient engagement" from recent academic literature, in order to deepen understanding of the term.
rob halkes's insight:

Read it - and think about what you  "mean" when you talk about "patient angagement" - Informative!

Josefin Y-Dahlqvist's curator insight, September 2, 2014 4:08 PM

The Challenges of Conceptualizing Patient Engagement in Health Care

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Better information would improve cancer management, according to PatientView survey

Better information would improve cancer management, according to PatientView survey | Patient Self Management |

Survey results demonstrate the need for scientific information about cancer to be understandable to patients

  • Findings are based on a May 2016 survey of 124 cancer-oriented patient and carer organizations in 39 countries, conducted by PatientView, and sponsored by AstraZeneca.
  • 99% of respondent patient/carer organisations report that people living with cancer want to know how their cancer treatments work.
  • Over 90% of patient/carer organizations report that patients must understand scientific concepts about cancer if they are to better manage their cancer.  


LONDON, Friday, 7th October 2016

New survey findings indicate a significant need for scientific information that is accessible to, and understood by, people living with (and affected by) cancer. The majority of patient/carer organizations responding to the survey recognize that cancer science is complex and fast changing. As cancer science improves, and new discoveries occur, people who are living with cancer wish to learn more about the science of their cancer diagnosis and treatments. Nearly all (99%) of the patient/carer organizations surveyed “Agree” or “Somewhat agree” that patients want to know how their treatments work, and 91% of the respondent patient/carer organisations say that patients need to understand relevant scientific concepts about cancer to better manage their cancer.


The patient/carer organizations responding to the survey, however, also say that cancer science is hard to navigate for newly-diagnosed and experienced patients alike, and that currently- available patient information about cancer is difficult to understand, and confusing to people who are living with cancer [60% of respondent patient/carer organizations believe that cancer science is not well explained to patients and the public.


  “An exciting new wave of cancer treatments is emerging out of the rapidly-advancing scientific concepts about cancer,” says Alex Wyke, founder and CEO of PatientView. “Yet, in the face of the advance, cancer patient information remains stubbornly hard for ordinary people to digest. The results from this 2016 survey show that over 90% of respondent patient/carer organisations believe that people living with cancer (and their families and carers) will be better equipped to manage the disease if they have a fundamental understanding of basic cancer science. Arming the cancer patient community with intelligible knowledge about cancer will allow people with cancer to understand more about the disease and its numerous diagnostic procedures and treatments. Such knowledge will empower people with cancer to communicate more effectively with doctors, nurses, and all the other health professionals who help them to fight cancer. In short, information about cancer science—carefully tailored to the needs of patients—will ultimately permit people with cancer to make truly informed decisions about their health.”  


Key findings from the survey include:

99% of respondent patient/carer organizations “Agree” or “Somewhat agree” that people living with cancer want to know how their cancer treatments work.

Over 90% of respondent patient/carer organizations “Agree” or “Somewhat agree” that patients must understand scientific concepts about cancer if they are to better manage their cancer.

57% of respondents indicate that increasing the awareness of cancer treatment options among patients and the public is a top priority of their organization.

61% of respondents say that the public is unfamiliar with basic scientific concepts about cancer.

83% of patient/carer organizations have been asked by patients/carers about immuno- oncology. However, only 48.2 % of those same organizations are themselves familiar with the topic of immuno-therapies in oncology.

67% of patient/carer organizations have been asked by patients/carers about gene mutations associated with cancer and biomarkers. Again, though, only 52 % of the organizations themselves claim familiarity with the concepts of genetic testing and precision medicine.  


Full survey results can be accessed via this link  


ABOUT THE SURVEY SPONSOR This 2016 survey of 124 patient and carer organizations was sponsored by AstraZeneca, a global, science-led, bio-pharmaceutical company that focuses on the discovery, development and commercialization of prescription medicines—primarily for the treatment of diseases in three therapy areas (respiratory/autoimmunity; cardiovascular/metabolic diseases; and oncology).  


PatientView was founded in 2000 out of a belief that the views of patients should be considered in every important healthcare decision (whether a new healthcare product or service, or a government change to a healthcare system). A UK-based research, publishing and consultancy group, PatientView has the capacity to reach out to 120,000 patient groups worldwide, covering over 1,000 medical specialties.


PatientView Ltd, One Fleet Place, London EC4M 7WS, UK +44 (0)1547 520 965


Media contact

Alex Wyke, CEO, PatientView +44 (0)1547 520 965]

Via PatientView
rob halkes's insight:

The more cooperation between patient groups and health industry, the more the really relevant and significant information can be researched to better health outcomes!

PatientView's curator insight, October 7, 6:41 AM

Survey done w/ support from @AstraZeneca shows #cancer patients want easier to understand, actionable info on disease and treatment

rob halkes's curator insight, October 7, 9:06 AM

Grt example of how big pharma supports healthcare provision, by generating significant patient needs!

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Consultation - EUPATI Guidance for patient involvement - EUPATI

Consultation - EUPATI Guidance for patient involvement - EUPATI | Patient Self Management |
EUPATI has launched a public consultation in order to review its EUPATI guidances for patient involvement in the medicines research and development process.

EUPATI has launched a public consultation in order to review its EUPATI guidances for patient involvement in the medicines research and development process. The guidances are provided as four distinct frameworks:

  • patient involvement in industry-led R&D
  • patient involvement in health technology assessment (HTA) bodies
  • patient involvement in regulatory processes
  • patient involvement in ethics committees


The frameworks have been developed in response to the increasing need to draw on the experience and specific knowledge of patients, and their day-to-day use of medicines, in order to improve medicines development and evaluation. The frameworks suggest approaches to allow structured interaction with patients, and thereby facilitate the exchange of information and constructive dialogue at national and European level where the views from users of medicines can and should be considered.

The four frameworks have already received feedback from a number of partners of the EUPATI consortium (including patient organisations), but further evaluation and feedback from patient organisations and other key stakeholders are essential in order to validate the guidance. The internal review resulted in some suggestions that require more discussion (applies namely to patient involvement with industry, but also with regulators). We specifically welcome further input on these by reviewers.

If you have significant expertise and knowledge in patient interaction with industry, HTA, ethics committees or regulatory bodies, please consider contributing to this review; please add your suggestions (in tracked changes) and comments directly on the documents after downloading them here:

  1. Framework for patient involvement in regulatory processes (DOCX)
  2. Framework for patient involvement in HTA (DOCX)
  3. Framework for patient involvement in industry-led medicines R&D (DOCX)
  4. Framework for patient involvement in ethics committees (DOCX)
  5. Letter: EUPATI guidances: public consultation until September 15 (PDF)

Once you have reviewed the documents, please forward them to the following address: This public consultation will end on 15 September 2016.

Following the consultation all comments will be carefully evaluated, and the guidance will be revised and released.

If you have any questions on the consultation process or on the documents, do not hesitate to contact Giorgio Barbareschi ( )

rob halkes's insight:

Gr8 to see how EUPATI the European Patients Academy actively invites patients and others to respond to their framework guidelines for patient involvement. It should trigger anyone to reflect on this who is concerned about better health and health care! See here

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Survey: Most Canadians want, but do not use, digital health tools

Survey: Most Canadians want, but do not use, digital health tools | Patient Self Management |
They may want it, but, for one reason or another, they aren’t using it. While nearly 90 percent of Canadians said in a recent survey that they want digital health technologies – believing it leads to better healthcare – only a small percentage are actually taking advantage of tools, according to a recent survey of over a thousand Canadians.  
rob halkes's insight:

Having digital technology is one, patients willingness to use it, is two. But integration of ehealth and mobile health applications is the core to success, even if everyone sees the benefit of it. It looks like we are still early in the process of learning how to make this happen, despite the good willingness.

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What’s up on WhatsApp: How native messaging apps can make the difference - FACE

What’s up on WhatsApp: How native messaging apps can make the difference - FACE | Patient Self Management |

In our fast-moving world, how can market research agencies keep up with the way consumers express themselves? Tereza Lachmanova, who heads up FACE’s online research communities and helps researchers manage and draw insights from community data, discusses how using publicly available digital tools can benefit self-ethnographic research in this new white paper. Tereza says:

“With technology rapidly changing, market researchers have been faced both with great opportunities and challenges when it comes to working with online communities. We are constantly evaluating how to get our communities most engaged with our research, and this paper discusses our findings on testing the use of existing mobile messaging apps rather than using research-specific ones.”

“Having worked on a wide variety of self-ethnography projects, Tereza tested numerous approaches to ensure community members would feed back ‘in-the-moment’ content, meaning they communicate experiences, preferences and emotions as they happen, rather than communicating them as a prompted task at a fixed time of day.”

To read the full white paper, you can download it for free on the FACE website here.

rob halkes's insight:

Great insights into how we might learn from patients' experiences through self-ethnography via "whatsapp"

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One thing every doctor should say to every patient

What if every physician, in every communication with a patient included a "What you can do for yourself is....." statement? This 6 minute exploration of patient engagement and self-management describes one patient's experience with her physician's suggestion that she experiment with integrative health practices.

rob halkes's insight:

Great story about a well meant advice to each patient from each physician...

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5 myths physicians believe about patient experience

5 myths physicians believe about patient experience | Patient Self Management |
See why clinician-patient communication, leadership of the care team, and support and empathy for the patient across the unit are the most important factors for success—and how physicians can embrace the role of
rob halkes's insight:

Good to se these in a row: Let these myths about patient experience  help you evaluate your own beliefs and attitudes ;-)

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Big BMJ supplement on Patient Centred Care – with many SPM and MedX voices |

Big BMJ supplement on Patient Centred Care – with many SPM and MedX voices | | Patient Self Management |

By ePatient Dave:
This is a great week for Society of Participatory Management (SPM), for our colleagues at the Stanford Medicine X conference, and for everyone else who's been working for years to shift medicine's
I’m thrilled to say that the BMJ, formerly the British Medical Journal, has just released a new article I wrote about the “social movement” aspect of our work, including the rationale for listening to the patient perspective.

Intended for medical audiences around the world, it’s part of a big, 21-article multimedia “Spotlight” supplement that will be in Thursday’s print edition; it was all released online yesterday. Over on the e-patient blog I posted the full list of articles, including the names of other members of our Society for Participatory Medicine who are in this issue. Big participation, big visibility!

This supplement, appearing in one of the world’s top medical journals, may well be the biggest moment yet in the history of our movement. It’s got hours of reading and listening, with contributions from eight countries, if I counted correctly.

Those of you in my generation – the era of many social movements – will relate to the parallels with what’s happening today: a whole class of people whose voice has been considered “not worthy” is speaking up, demonstrating capability, and pushing back when we’re told to “stay in our place.” :-)

rob halkes's insight:

The new era of health care is to be build around these principles:

- Multidisciplinary connected,
- Integrated,

- participatory care, and,

- eHealth

Participatory care is about patient empowerment, not only by principle but also by effectiveness. And, beyond that, it is also from a finance argument that active, guided, but self-managing patients will lead to better health outcomes and less costs.

Lots of health care systems, governments and payors must reflect to find approaches of development that are constructively aiming at building the new structures of health care with parallel reasonable and attainable efforts in lowering budgets, instead of enforcing costs cuts that initiate panic and non desirable effects.

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Medical errors: We can't trust doctors to get it right

Medical errors: We can't trust doctors to get it right | Patient Self Management |

We have lost track of what should be the most important dictum in medicine, his "First, do no harm."

“If doctors do no other good, they at least prepare their patients early for death, undermining little by little and cutting off their enjoyment of life.”

These words from Montaigne are 350 years old, but, sadly, too often they describe the results of modern medicine, particularly when it is mindlessly applied in a needlessly heroic way to the end of life.

I spend a lot of time going around to different places warning professionals and the public that overdiagnosis, overtesting, and overtreatment are bad for our health.

Recently I have been witnessing these dangers firsthand. I have a friend who has lung cancer — the “good,” slow-growing kind. His doctors have been less kind than the cancer. They keep screwing up in ways that seem likely to kill my friend before his cancer does.

The basic problem is that modern medicine consistently violates the ancient advice of Hippocrates: “It is better to know the patient who has the disease than the disease the patient has.”

My friend has a small army of very highly specialized doctors all treating lab results in one tiny medical domain while ignoring all the aggressive stuff the other specialists are doing. None of the doctors has a global picture of my friend’s treatment and the specific risks and benefits that apply to each new test or treatment.

The result is dangerous medical chaos. Doctors love pictures and get paid a lot for ordering and reading them. Over the years my friend has been subjected to countless and mostly unnecessary imaging studies with contrast dyes that have compromised his kidneys. It seems likely that renal insufficiency will kill him before his lung cancer does. He is also no longer eligible for additional lung-cancer treatments because his kidneys flunk protocol requirements. And along the way he has been prescribed several unnecessary medications that also hurt his kidneys. Everyone focused on the lung cancer; no one noticed the harm they were doing to the kidneys.

There have also been several close calls because he was prescribed multiple medicines by multiple doctors without coordination and due consideration of the drugs’ interactions and synergistic harms.

The mistakes were all easily preventable if anyone were minding the store and paying attention to the patient, not the lab tests. In any common-sense world doctors would care about risks and harms and wouldn’t always be rushing to order stupid and dangerous tests and treatments.

.. Read on in the original bog!

rob halkes's insight:

Everyone will have some example of how things can go wrong. or say less then well in care for health ... 

It is my own conviction that patients need to be assertive first, not just health literate. Professionals are professionals while they have  taken up the task to help and support patients with their conditions. First to that is explaining what they suggest and making sure the patient understands.. -

Just like you just can't expect a teacher to be ineffecive with pupils not knowing what they teach. -  In education that's a fact to start with..!

In health care, one cannot start from the fact that patients know what they have as a condition....

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Launch of first ever Health App Toolkit to help people understand and use health apps

Launch of  first ever Health App Toolkit to help people understand and use health apps | Patient Self Management |

From Patient View:

Launch of the first-ever toolkit to help people understand and use health apps
©PatientView Ltd 2014
Author: Tony Newbold
Editors: Clive Nead, Dee O’Sullivan, Alexandra Wyke
Designer: Mark Ansell

A clear, concise, simple manual to help patients and the public make the best choices and decisions about health apps, “Health Apps—a Toolkit to Help You”, is available in print and online. Launched today, Wednesday, 1st October 2014, at the European Health Forum Gastein 2014, and circulated to the Forum’s 650 delegates (who come from all over Europe and beyond, and who represent the key stakeholders of the European health policy community).

This Toolkit is needed to answer the many questions that patients and carers have about health apps
A soon-to-be-published study* by PatientView will reveal that the public are confused by the sheer number of health apps available (100,000), and are not sure that a particular health app will help them. Members of the public may also not trust health apps, because they do not know who makes the apps, or whether their health data would be secure on an app.

[*Source: “What do patients and carers want from health apps?” A July-October 2014 global survey of over 1,000 patients, conducted by PatientView in collaboration with Health 2.0. Survey results to be released Monday, 10th November 2014, at the 2014 Health 2.0 conference in London.]

“The myhealthapps’ Toolkit is a good initiative to empower citizens. It is the type of health-literacy project that the European Commission encourages.”

—Robert Madelin, Director General, DG CONNECT, European Commission

rob halkes's insight:

The first, researchbased toolkit for patients to help them select their health apps! Insightful and practical! See it online here

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Co-Creating Healtcare | Sustania - building the world of tomorrow

Co-Creating Healtcare | Sustania - building the world of tomorrow | Patient Self Management |

In Sustainia, the most important resource in the sustainable transition is you. In the guide to person-centred care, we have taken a closer look at the world’s healthcare systems and what it takes to make them person-centred.

What we understand by healthcare today needs to be redefined so that you become an active partner in creating health.

DNV GL and Sustainia are travelling the world this fall to explore how we can co-create healthcare.

The mission is to put the person, you, at center of the care. And to do this, we will identify, document and communicate solutions that can inspire a safer, smarter and more sustainable healthcare approach.

rob halkes's insight:

Sustania's inititiative is a great one to move people in health care to actually do some and relate with others to comparte and learn, how to do this. Implementation is key, as they say. And, it is. read on their website all about it.

As for the method of co-creating health care, this might help:

co-creating in health care !

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The Doctor’s Inbox — Healthcare Providers Use Technology to Communicate with Patients

The Doctor’s Inbox — Healthcare Providers Use Technology to Communicate with Patients | Patient Self Management |

Despite security and privacy concerns, a growing number of physicians are embracing digital technology in their communication with patients. That includes sharing information about services and wellness to a broad audience, and also corresponding directly with patients about their personal health issues.

The recent improvements start with physicians revamping their websites. This has allowed doctors to post essential information about which services they offer and to make appointment scheduling easier through patient portals. That includes streamlining the processes of rescheduling and sending reminders electronically instead of over the phone.

A common analogy that’s made is making the patient scheduling process similar to picking a seat for a flight through an airline’s website, says James Karpook, principal at The Chartis Group.

That mentality is expanding to include information about how to contact physicians directly to follow-up after an office visit.

“More and more physicians are communicating with their patients via email so that they don’t have to call in and be waiting on the phone to speak to a nurse or the physician,” says Karpook.

Another area where communications technology is helping doctors is in disease management. For example, patients who have congestive heart failure can use a device at home that links to a processor to capture real-time results. Physicians can then take immediate action when a problem arises.

Also, diabetes patients are using mobile apps to log their blood-sugar levels so healthcare providers can monitor them in real-time. Providers are also sending patients text message reminders to check their blood sugar and then have the data sent to the doctor’s office.

Social media is another growing digital frontier for physicians. Many are posting articles and sharing their expertise about wellness and healthcare innovation on Facebook, Twitter, and LinkedIn. “Social media is ideal to connect with patients collectively, but not individually,” said Dr. Kevin Pho to The Doctor’s Tablet Blog.

Dr. Pho is an advocate of doctors having protected social media time during the workday so they can write blog posts or create videos to be shared. That would force them to get more comfortable with the technology and possibly push ideas to another level. “Replacing a half-day session a week of seeing patients with social media time to create content would be a reasonable goal,” he said. “Healthcare leaders and administrators are the ones who can make that happen.”

Still, it’s the one-on-one electronic communication that will set the tone for the future of healthcare. More doctors are corresponding with patients through email and text messaging. Karpook also cites a next wave of physician concierge services that charge a monthly fee to allow patients greater access to physicians through email, instant messaging, or video chat. Making these channels secure and private is the biggest challenge ahead.

 “We’ll have to continue to find ways to ensure that electronic health information that’s shared is secure,” he says. “There needs to be the IT infrastructure to support it.”

To a great extent, electronic communication between doctors and patients will be driven by consumer preference. As more consumers begin to prefer electronic means for communication, healthcare organizations and physicians will have to adapt to accommodate them. Couple that with the bigger structural healthcare reforms that are promoting better communication between doctors and patients, and it’s likely that we’ll be seeing more progress in this area very soon.

“Perhaps in the coming years, when payment isn’t tied to the number of patients seen, communicating with patients can be emphasized, whether it’s through a phone call, email, or social media,” said Dr. Pho.

Via Plus91
rob halkes's insight:

Yes, the world of medicine and physicians is changing ;-)

Lisette Pangilinan's curator insight, August 23, 2014 2:57 AM

Social media plays an important role in promoting health care and wellness. We are now empowered to take a role in our own health.

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Wolters Kluwer | Press | News | Survey: Americans Want Greater Control Over Their Own Healthcare

Wolters Kluwer | Press | News | Survey: Americans Want Greater Control Over Their Own Healthcare | Patient Self Management |
Wolters Kluwer is a market-leading global information services and publishing company focused on professionals.

(December 12, 2012)  — 

Philadelphia, PA (December 12, 2012) – According to a new Wolters Kluwer Health survey, 80 percent of consumers believe the greater “consumerization” of healthcare – or the trend of individuals taking a greater and more active role in their own healthcare – is positive for Americans. Survey data suggests many Americans feel that a greater role in their care is not only good, but necessary, with 86 percent of consumers reporting that they feel they have to take a more proactive role in managing their own healthcare in order to ensure better quality of care.


Most consumers also say they feel prepared to take on a greater role in managing their own healthcare, with 76 percent reporting that they have the information and tools to take a more proactive role in healthcare decisions ranging from choosing healthcare providers to researching treatment options. Despite feeling prepared, only 19 percent report that they have their own electronic Personal Health Record (PHR).


“With greater responsibility placed on patients to take a role in their own care, it’s essential that consumers have access to evidence-based tools and resources to make informed decisions about their care in partnership with their healthcare providers,” said Dr. Linda Peitzman, Chief Medical Officer, Wolters Kluwer Health. “Access to research-based medical information not only can positively impact quality of care, but it also can lead to improved doctor-patient communication and relationships.”

Survey findings showed that the notion of the “patient experience” is also gaining significance for many Americans. Three in ten adults (30 percent) want their patient experience to be the same as any other customer experience they have – such as shopping, hotel and travel experiences – complete with choices and control.


See report here

rob halkes's insight:

Already at the end of 2012 this survey was completed about the consumerization of health care. See the report here .

Now, in 2014, we can state that the trend is persevering.

Ehealth is now no more option, it is a must tp adapt to patients' wishes!

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