eHealth - Social Business in Health
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eHealth - Social Business in Health
ehealth, integrating care, health monitoring, on line communication, interaction and (mobile) technology to care for health better
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Personal Health Data - Getting and Sharing

Personal Health Data - Getting and Sharing | eHealth - Social Business in Health | Scoop.it

From HIMSS, by John Sharp:

Blogs, Journals, News, White Papers To help small practices, vendors need to think like patients

A report on a series of presentations on patient engagement at HIMSS15. The presentations included statistics on patients strong preferences to be notified by texting of appointments and other reminders and their desire to be equal partners in healthcare decision making

Telemedicine market to soar past $30B
An increasing aged population and healthcare costs are propelling the market growth.

Why what works for Uber may not work for medical apps

While many innovators and futurist like to see Silicon Valley startups with high valuations as a model for healthcare. This excellent piece points out the weakness of this argument - healthcare is based on a social contract, the risk of losing everything (not an option in healthcare),  unnecessarily galvanizing the opposition, misreading the law,  Uber’s strategy hasn’t even worked in the transportation industry yet (they now have 70 lawyers).

Patients and Families as Partners

Amer Haider of the startup Doctella shares his experience with his father’s hospitalization and the frustration of trying to obtain personal health information. Amer is an advocate of involving patients in patient safety through the use of checklist, but this hospital frustrated his attempts to get involved in a family member’s care.

My Medical Records | How To Get Them

From the Louisiana Health Quality Forum which is promoting getting one's health data - how and what to get - directly to patients. An important direct to consumer approach which should be copied by other states.

Will Personal Health Information Exchanges (PHIE) Lead the Consumer Medical Record Revolution and Bridge the Gap Between PHRs and EHRs?

This strong argument for patient access to medical records proposes an approach from a Frost and Sullivan white paper on using PHIEs rather than HIEs to get patients their data. Quotes leaders in the field including David Kibbe..

Sharing Your Fitness Tracker Data? ‘Pace’ Yourself

This article discusses the potential uses of fitness tracking devices in research. Runkeeper meets researcher.

Social Media Use in Chronic Disease: A Systematic Review and Novel Taxonomy

From the American Journal of Medicine, this literature review showed that "48% of studies indicating benefit, 45% neutral or undefined, and 7% suggesting harm. Using social media to provide social, emotional, or experiential support in chronic disease, especially with Facebook and blogs, appears most likely to improve patient care."

5 Things You Should Know About Your Electronic Medical Records

From the Cleveland Clinic blog, a good basic primer for patients on their portal.  The author, Steven Nissen, MD, warns that it may include medical jargon you may not understand but it will keep you well informed about your health numbers and your doctor's recommendations (assuming your portal has Open Notes).


The 2015 #HIT99 Results Are In..


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rob halkes's insight:

Very inspiring collection of presentations and outcomes of the HIMSS meeting! Every bit a stimulating read.

Each a fundamental aspect of getting to ehealth

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Lionel Reichardt / le Pharmageek's curator insight, August 10, 2015 6:03 AM

Very inspiring collection of presentations and outcomes of the HIMSS meeting! Every bit a stimulating read.

Each a fundamental aspect of getting to ehealth

SergePPlourde's curator insight, August 10, 2015 9:47 PM

Very inspiring collection of presentations and outcomes of the HIMSS meeting! Every bit a stimulating read.

Each a fundamental aspect of getting to ehealth

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Patients need to have control over their own information if care.data is to work

Patients need to have control over their own information if care.data is to work | eHealth - Social Business in Health | Scoop.it
The consent process for opting out of care.data should be clear and transparent, and patients should be the first to have access, says Mohammad Al-Ubaydli

The case the government makes for care.data, that allowing medical researchers access to patient data will result in new cures, is a hard one to oppose. If the case were so simple then most people, including me, would welcome it.

The question that the care.data effort brings to light is a simple one – why has the NHS moved so quickly to provide patient medical records to third parties and so slowly to provide data to the patient themselves? For me, this is entirely the wrong way round.

The consent process for opting out of care.data is neither clear nor transparent. The questions page states that the record will not contain information that can identify a patient – and it's true that NHS number, postcode, full name etc will be removed. However, it's also true that each patient's record will be linked to a "meaningless pseudonym that bears no relationship to their 'real world' identity".

The information being shared by care.data is substantial. They exclude sexual health data, such as HIV diagnosis or abortions – but they include mental health data. They exclude written notes – but they include actual diagnoses, medications and laboratory results.

In addition, the records will be shared with third parties a patient might not want to have their data. HSCIC public assurance director Dr Mark Davies has already said that, in the eyes of the law, the government can't distinguish between a request by an insurance company and a medical researcher to access the database. For them, it makes no difference. But it makes a difference to the patient, who could, would and should distinguish. Indeed, at the moment the patient isn't even allowed to see data in their own record that third parties will have access to.

Government representatives repeat in interviews that they need to open a debate on care.data – so let's have the debate now while plans have come to a temporary halt. We know from other countries that a proper discussion on government-controlled data leads to different outcomes. ...

The government says that care.data can bring huge benefits. If so, it needs to prove what these benefits are and start by giving the patients themselves data about their own bodies.

Dr Mohammad Al'Ubaydli is the CEO and founder of Patients Know Best

rob halkes's insight:

National health record systems should be furthered by giving the patient first access to their information. First, because patients are best suited for checking those data for which they are the only right source for checking it, e.g. their medications: think about actual use. They are the sources for checking "actuality": what is actually being "used", "validity": is the right information given - does it represent what is "on" and what not, and "reliability" is everything in the right terms and details (doses for instance). That is the instrumental use of patient access, besides the principle use of it: patients ought to have insights in their formal data and functional use of it: by sharing same information and data the protagonists in care for patient's health can do a better job together for better health outcomes. ..


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Julie Marker's curator insight, March 6, 2014 5:05 PM

Australian patient don't have access to our own health data, diagnoses, medications, lab test results;  surely that is a fundamental right!  The PCEHR is the dream, not the reality of delivering this.

Mariló Maldonado's curator insight, October 14, 2014 8:05 PM

Interesante artículo sobre el manejo de base de datos de pacientes de la Salud Pública británica (NHS)

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Patient Engagement: A defining moment

Patient Engagement: A defining moment | eHealth - Social Business in Health | Scoop.it

This week on March 5, I'm delighted to have long-standing #hcsmca member and co-founder of #hcldr chat Colin Hung lead a discussion on patient engagement. I'll let Colin explain. 

By Colin Hung (@Colin_Hung)

Colin Hung

Last week I had the privilege of attending the 2014 annual HIMSS conference in Orlando Florida. Every year, I’m amazed and inspired by all the innovative people, products and projects that are presented or on display. This year was no exception.

One of the trending topics this year at HIMSS14 was patient engagement. For me this was particularly exciting. For years many of us on social media, especially those of us who participate on #hcsmca and other chats, have been advocating for more patient involvement in healthcare. Together we have helped to push the industry towards true patient-centred care and truly engaged patients.

In 2012 Leonard Kish (@leonardkish), a well-respected Healthcare IT consultant, wrote an amazing blog post, The Blockbuster Drug of the Century: An Engaged Patient, that showed how patient engagement could be the “blockbuster drug” of the year. In his post, Kish provides very compelling statistics:

  • 19.74% reduction in hospital admissions
  • 25.31% reduction in bed days of care
  • 86% patient satisfaction
  • $1,600 average cost per patient per year, compared to $13,121 for primary care and $77,745 for nursing home care
  • 20% to 57% reduction in the need to be treated for the chronic diseases studied, including diabetes, COPD, heart failure, PTSD, and depression

As I was touring the HIMSS14 exhibit hall, I was reminded constantly of Kish’s post. Almost every vendor had some form of patient engagement technology. ..

I began to wonder about the definition of patient engagement and whether or not it would be worthwhile for the healthcare IT industry to have a common definition. It’s my belief that armed without a standardized definition or widely accepted market norm, we’ll continue to see poorly conceived engagement technologies that do little more than throw patient data onto a screen...Pat Rich (@cmaer) wrote an excellent Day 1 summary of #HIMSS14,  The patient has no clothes, where he commented about how challenging patient engagement will be to operationalize: 

“…while the majority of patients will discover errors in their own records when they evaluate them, there are few mechanisms or resources in place for doctors’ offices to correct those records … and many physicians are unprepared for the impact truly engaged patients will have on their workflow.”

I believe that almost everyone would agree that becoming more involved and engaged in your own health and healthcare is a good thing. But what does being an engaged patient really mean? Is it possible to come up with a single definition that we can all agree to? ...

rob halkes's insight:

Great observations. Indeed large volumes of interests..
Interests in both meanings of curiosity and of weight (in the sense of self-interest) are high in this case. After a history of telling patients what to do (see for instance http://sco.lt/7DGqp7 ), it will be no wonder that we really do want change to happen, but that is tricky. As Pat suggests: let’s do some research and in any case let’s write evaluations of any trial or pilot we undertake. It will not be easy surely.
That’s why I was thinking in building efforts to cooperation among protagonists. I gave a description of it here: http://bit.ly/1icTOvZ . I’m curious of what you think of it. By the way co-creation and co-creation of experience is an excellent method to process coordination in this.

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Free The Data: APIs Boost Health Information Exchange - InformationWeek

Free The Data: APIs Boost Health Information Exchange - InformationWeek | eHealth - Social Business in Health | Scoop.it
New models promise to make sharing health information almost as simple as shopping on Amazon.


My last two articles had a common theme: freeing the data. We first looked at new approaches for patients and for providers. Of course, no matter how innovative the personal health records (PHRs) or electronic health records (EHRs) become, given the highly fragmented and specialized US healthcare system they still need to exchange data in a secure way that preserves privacy and trust. That is the goal of health information exchange (HIE).

HIE has been around for decades. Back in the mid-1970s, I tried (unsuccessfully) to create one in a rural county in South Carolina. From then until now, there have been nagging problems around the inherent lack of interoperability in commercial health IT systems; the lack of business incentives to share data; and the mismatch between the cost of HIT and its perceived (or real) financial benefits and to whom they accrue. We'll focus here on how interoperability might be achieved at an affordable cost.

The key HIE technical challenges are easily understood. Parts of a patient's clinical data will often be stored in many EHRs. For a patient with four, five, or more chronic diseases (these drive half of all Medicare costs) research shows that this will typically exceed 10 EHR implementations from multiple vendors! A conscientious provider seeing such a patient would want a comprehensive view of all of this care in order to save time collecting information that already exists, avoid duplicating tests and procedures that have already been done, and prevent mistakes from lack of information. ...

Historically, there have been two attempted solutions: 1) store everything centrally and, in essence, create a community record, or 2) keep the data at the source but build central indexes to patients and their medical documents and provide some kind of translation service to bridge differences in the way clinical data is represented across EHRs. This is the so-called hybrid exchange. ...

Thus achieving financial sustainability, in the absence of government or philanthropic subsidy, has proven too challenging ..

As a result, starting a few years ago a third approach began to gain traction. It's called the Internet! Actually, the proper term is federated exchange. Leave each patient's data where it is and use lighter-weight technologies to support exchange. ..

Read on !

Could this be the future of HIE? It's too early to be sure, but I wouldn't bet against it!

rob halkes's insight:

Indeed, in concspt these appear simple solutions. However as the cases from for instance Belgium and the Netherlands, each with different approaches, proove to be difficult. "Implementation" is the neam of the game.

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