Category Archives: eHealth

The e-Health Perspectives of e-Patient Dave (Part 2)

Capital I Innovation Interview Series – Number 3

The e-Perspectives of e-Patient Dave 

e-Patient Daveis a world renowned keynote speaker, author, government policy advisor, e-patient advocate and champion of participatory medicine.  He, along with his physician, Dr. Danny Sands, has been named one of the “Twenty People Making Healthcare Better.”  An acclaimed speaker, Dave has received a myriad of standing ovations for his penetrative presentations, including his TEDTalk in the Netherlands this year.

As I have made clear in an earlier post, if there is anywhere that Capital I Innovationis essential, I believe it is in the field of eHealth.  This is one of the reasons I was so drawn to e-Patient Dave, an Innovative patient and  leader in what I call meHealth.

meHealth expects that I, you, we, take it upon ourselves to expect (if not demand) that all healthcare stakeholders at all levels work together to ensure that affordable, effective healthcare is available to one and all. There may be no one better known for voicing this expectation that e-Patient Dave deBronkart.

Why did you become a healthcare advocate?

Funny you should ask. During his presidential campaign JFK was asked how he became a war hero, and he answered, “It was involuntary. They sank my boat.” Same here.

I was going through life ignoring healthcare, as most of us do – it was always like the fire department: if I ever need it, it’ll be there.  And when my crisis hit, it was there for me – pretty much.

In hindsight there were avoidable errors, but all in all they saved my life, brilliantly, including gluing and screwing my leg back together when the cancer ate such a big hole [in it].

A year later my physician, Dr. Danny Sands, invited me to go on a retreat with the gang, with whom he’d been discussing what we now call e-patients. I read the e-patient white paper, and it blew my mind.  My little hobby blog took a sharp right turn, as if it had bounced off a boulder.  I renamed it from “the New Life of Patient Dave” to “e-Patient Dave,” and started reading books about healthcare.

And here’s the power of social media when combined with conventional print:  A year later, I tried to move my hospital records into Google Health.  What came across was garbage. It wasn’t Google’s fault – the hospital sent garbage.

That knocked me for a loop, and it took me weeks to figure out what to say.  I finally wrote a 3500 word blog post about it.

The next thing I knew, the Boston Globe called because, unbeknownst to me, medical data was a hot topic in Washington.  They wrote about my post on page 1, and we were off to the races:  speaking, policy meetings in Washington, thousands of Twitter followers, and ten months later, the end of my old career and the start of this [advocacy].

Involuntary indeed; but I’m so happy it happened, because heaven knows healthcare needs to let patients help.

What responsibility do you feel in your position as a healthcare advocate?

Not a day goes by that I don’t think of the thousands of people who, just that day, got the news they never wanted to hear.  Four thousand people a day in the US discover they have cancer.  That alone is enough.  Heaven knows how many people get other life-altering or –ending news.

Five hundred times a day, in the U.S., medical errors accidentally kill someone over age 65.  For all these people, and their families, I want to improve healthcare.

I also think about the many, many healthcare employees whose lives are sometimes ruined by involvement in a horrible medical error.  In some cases these deaths or ‘harms’ are caused by negligence, but too often they’re the inevitable result of healthcare methods that simply are not as matured, not as reliable, not as bullet-proofed, as the rest of life.  As we are all in denial about it, there’s zero chance we’ll get serious about dealing with it.  So the pain continues.

Last month in Seattle, I believe, a skilled nurse killed herself after her involvement in a tragic pediatric death that became a media circus.  Shame on those media people, for hounding that woman to her death.

The responsibility I feel is to wake people up about the complexity and riskiness of healthcare, to get us out of denial – patients and providers alike – so we can work together to improve processes and, in the interim, manage and minimize risks as best we can.  [It’s about] participatory medicine.

Who is the Healthcare customer – is it only the patient, or do you include healthcare providers and managers?

“I think the answer is that, in all cases, the customer is not well served – with the sole exception of the insurance companies… when I say patient, to me that’s a collective noun. Its everybody who’s on the receiving end of the professional services.”

For more Dave’s answer to this question, click play on the video!

In our lead up to this interview, we joked about wanting to change the world.  If you could change the world, how would you do so, and what tools do you need to make it happen?

Well of course, world peace, a stable population, plenty of food, mutual care, a healthy nourishing upbringing for every child, and all kinds of things. (Caution -I’m trained in how to visualize a future without concern for its current feasibility.)

I wasn’t joking about changing the world. Cynics are wrong; change happens all the time. For heaven’s sake, the Web was only born 17 years ago. (The Mozilla browser arrived in April 1994.) That’s only 6300 days ago.

Cynics should think about this: if everywhere you turn, the world looks like shit, perhaps you have your head up your ass.

So I am changing the world (and so are you), and it’s not a joke. My tools are stories – mine and others’ – because stories well told are potent change agents; [I use] humor, because it’s more engaging than just tragedy; logic, for instance explaining why it’s reasonable for patients to be active participants; evidence; and social media.

How do you define Innovation in Healthcare? [Note: throughout his answer Dave refers to the KimmiC definition of ‘Capital I’ Innovation: Something that was not there before, upon which new economies and cultures can be built.]

Trick question – Having said that …

What’s “not there before” in healthcare is to start with the question, “What would the customer like to see?

I’m increasingly certain that the principal source of dysfunction in healthcare is that it’s the only industry I know where the definition of quality doesn’t start with what the customer wants.  Once we ignore that, then all our best efforts to improve other things will pursue other goals, but not home in on more satisfied customers.

Want evidence of this?  Consider that hardly anyone in healthcare can even imagine what this question means, much less that it might be important. 🙂

And yes, entire new economies can be built on this. Entire new ecosystems, in fact.

The other “what’s not there before” is for all our medical data – all your medical data – to be in your hands, your property, for you to take with you wherever you want.

Aside from putting the power where it belongs – in your hands – it will enable another new ecosystem of personal health data tools.

Combine the two, and we could someday see a health ecosystem that’s built on what people want, not what professionals say they should want.

The third ‘Capital I’ is uncommon today and could be immensely powerful:  a vast and widely-known network of patient communities for every condition under the sun.

Not only is there great practical value in connecting with other patients for disease management and day-to-day tips, communities enable information pathways that bypass the limitations of clinical trials and medical journals.  Those methods are focused on the scientific method, which is great – it saved my life – but by their nature those methods can’t measure anything that cannot be subjected to trials, and can’t identify factors where the scientific method is weak.

Finally, consumer communities know about findings that fail or side effects that arise after the articles are published – and communities spread the word far more rapidly than traditional channels.

What do you think are the main barriers to the success of healthcare innovation?

This too is too big for me to answer.  Having said that, within the narrow scope of my own knowledge, the main barrier I do know of is the lack of that belief that the patient ought to define care’s objectives.  If every clinician and hospital executive truly believed that everything they do is to accomplish whatever we [the patients]  want, much would change.

And [now] consider how unimaginable or senseless that seems to them.

If you could give a ‘Capital I’ Innovation in Healthcare Award to anyone, who would you nominate? 

I don’t know the whole industry.  Having said that, at this moment, within my very limited experience, I see these nominees. (I hesitate to say this because of whom I might leave out.)

    • The current leadership of the U.S. Dept of Health & Human Services. They’re implementing truly patient-centered policies for the first time in generations. That is “that which was not, before.”
    • The people in the Obama administration who by some miracle got US health reform passed. Almost every president since Roosevelt had tried. That is “that which was not, before.”
    • Don Berwick, head of Medicare and Medicaid, who is implementing policies and freeing data which will empower real informed choice for consumers.
    • Lucien Engelen at Radboud UMC in the Netherlands, for creating the REshape Academy, which is actively at work on reshaping the care relationship. That is “that which was not, before.”
    • Regina Holliday, Medical Advocacy Muralist. A phenomenal story teller in words and paint, she has been putting a face on the human suffering from our dysfunctional system. That is “that which was not, before.”

Are you a patient patient?

Hell yes, presuming the care team is working competently and I’m not being subjected to waits for no good reason.

Though the last question I ask, it is no doubt the most important.. how is your health now?

My cancer is completely gone; for better and worse, I’m exactly back to where I was before the illness, including being a bit overweight. (When the treatment ended I’d achieved my ideal weight! Unfortunately I’ve gained it all back.)

The only clinical difference is that I have one less kidney and adrenal gland, and a bunch of steel that repaired my femur after it snapped from the cancer.

Personally, I’d say Dave has a lot more steel in him than just which repaired his femur. 

[Note: On July 23 Dave celebrated the fourth anniversary of his last dose of HDIL-2 (high dosage interleukin-2), the treatment that rapidly reversed the course of the cancer that was killing him.  He hasn’t had a drop of treatment – and thus not a single side effect – since then!]


For more information on e-Patient Dave, check out:

(Kim and Dave Skype’d between from their homes in Sydney and Boston  on July 26, 2011. Part One of this series can be found here.)

(NOTE: Excuse the quality of the filming/lighting/all-other-ing of this interview.  Suffice it to say, Spielberg has no worries I’m going to be sitting in his chair anytime soon!)

Capital I Innovation Series Introduction

It’s meHealth I’m Talking About – The To Do List

The following is a list of meHealth issues, and an overview of some of the steps necessary to solve them: meHealth

  • Convince stake holders of the efficacy of Personal Healthcare Pages and/or (PHP) National Electronic Health Records (EHR)
  • Enable all healthcare stakeholders (consumers, healthcare givers, healthcare managers) to use the Web as a platform to share information, deliver care and build communities
  • Enable patients to make better lifestyle choices

Collaborative Health

  • Convince stake holders that Collaborative Health Care (CHC) is a cheaper, safer, and better system
  • Enable single points of contact, self service and self help
  • Enable Doctors to make better diagnoses and prescribe better treatments through access to more useful and integrated data
  • Enable data aggregation to produce useful data of clinical significance for researchers evaluation, teaching doctors and development of health services

Non Vendor Locked Tools

  • Ensure systems are easy and economical for use by all stakeholders
  • Enable tools that help patients feel more informed, included and valued
  • Enable medical help via Web sites/browsers and smart phone apps
  • Enable easily understandable bundles of products and services that can be compared on quality and price, and used by stake holders with a wide range of capability levels
  • Enable access to and co-ordination of home based medical equipment / tools and assessments along with data-generating Web-enabled devices
  • Enable tools for doctor patient dialogue
  • Enable healthcare givers to electronically interact with patients regardless of where they are located
  • Enable disparate IT systems and processes to connect and co-ordinate with each other
  • Enable secure flexibility within mobile services, using such tools as PDAs and VOIP processes
  • Enable healthcare managers to better respond to emergencies and rapidly assess the national impact of particular treatments

Governmental Issues

  • Enable and enhance uptake by governmental agencies
  • Support government responsibility for public infrastructure and systems
  • Enable support for vast consumer and care provider populations in urban, suburban, rural and remote locations
  • Enable effective co-ordination and oversight of national E-Health activities
  • Enable tools and systems which support informed policy, investment and research decisions

Security and Privacy

  • Ensure security of all data transfers
  • Ensure privacy for patients
  • Enable confidential electronic information to be securely and seamlessly accessed and shared, by the right person at the right place and time, regardless of their location


  • Either create and enable record system standards and benchmarks, or make standards unnecessary by enabling different systems to talk/work with to one another without vendor lock, using a Web 3.0 / Semantic Solution

Data Management

  • Incentivise enhancement of IT and information management
  • Incentivise investment in infra- and info-structures
  • Ensure easy and economical training and support
  • Ensure implementation is cost effective


  • Maximize existing information management and technology to improve functionality
  • Upgrade old computers and dial-up Internet access or ensure they can work within the new system
  • Ensure new systems are designed with potential user consultation
  • Support Funding to improve rural ICT infrastructure
  • Ensure broadband / ‘chatty’ high-speed connections are not necessary for most clinical consultation (Systems can be broadband based, but must not be broadband bound)


  • Reduce/Eliminate errors, inefficiencies and the wastage of time and effort
  • Lower healthcare provisioning costs
  • Ensures cost and service level transparency
  • Lowers costs on families and communities supporting the elderly
  • Cut time needed to review and implement systems and training
  • Modernise the management and transmission of data
  • Consolidate medical records/services and clinically relevant information
  • Remove duplication of healthcare efforts, expenditure and solutions
  • Reduce administration time and costs
  • Combine insurance systems reducing duplications and high overhead costs

Systems and Processes

  • Enable an integrated health care delivery system
  • Link emergency and acute hospitals with tertiary care in the community sector
  • Enable integrated healthcare delivery systems and the consolidation of medical records/services
  • Ensure B2B applications (i.e. reporting, billing and claiming processes) are integrated into general practice software systems
  • Enable the secure viewing and following of healthcare processes
Well, there is.
Bottom line: meHealth makes money, and it makes sense.
If you want to talk about the tech,  get in touch!

The e-Health Perspectives of e-Patient Dave (Part 1)

Capital I Interview Series – Number 3 (Part 1)

The e-Perspectives of e-Patient Dave 

Recently I, along with a myriad of others around the world, was introduced to the passionate, personable and thought provoking e-Patient Dave through his TED Talk ‘Dave deBronkart: Meet e-Patient Dave.

I was so inspired by his presentation, I immediately took to Twitter to send him a message of congratulations – and an invitation to become involved in my Innovation Interview Series – not least because of my long held interest in Innovation in healthcare, and in meHealth in particular.

Unsurprisingly, with  more than 180,000 views so far, and having been subtitled in nine languages, Dave’s TEDTalk has proven to be an international hit.  So much so, that TED invited him back to do a TED Conversation on “Let Patients Help”   scheduled for Wednesday 27 July at 1:00 p.m. (US) EDT.

My interview with Dave, conducted on 26 July, will be posted in a series of ‘chunks’ – some in text, and some in video format.

(NOTE: Excuse the quality of the filming/lighting/all-other-ing of this interview.  Suffice it to say, Spielberg has no worries I’m going to be sitting in his chair anytime soon!)

This first posting, to coincide with the Ted Conversation, will look at two questions in particular: the responsibility of Healthcare users and the demands they are entitled to make.

But first, lets talk about TED:

You’ve recently done a TedTalk and had a great global response to your presentation.  What has been the most surprising outcome from this success.

It’s no surprise that being  a hit on has been phenomenal at spreading the meme.  What is a pleasant surprise is that it’s clearly gone viral: the idea is currently spreading at over 1500 views a day, and volunteers have added subtitles in eight languages.  WHAT a pleasure for any advocate, to see an idea take off like that, especially across cultures. Farsi!

And what a testament to the power and reach of TED.

And who brought you into TED?

That’s my friend Lucien Engelen, His Twitter name is Zorg – which means ‘Care’ in Dutch – 20, and he is a visionary.  A visionary who has the ability to execute. About two years ago he got […] authorized to run a TEDx, the smaller regional franchise TED events, in Maastricht.  A year before it happened he announced that a patient was going to be the first speaker at this medical conference.”

Lucien Engelen is a Health 2.0 Ambassador, the Director of the Radboud REshape & Innovation Center, and on the Advisory Executive Board at Radboud University Nijmegen Medical Centre

“Clearly this is tapping into something in consumers cross culturally – people want to be involved in their healthcare around the world.”

What responsibility do you think healthcare users need to take in their own health?

The simplest eye-opener view was put forth in December 2008 by endocrinologist Stanley Feld: “Physicians are coaches. Patients are players.”  You don’t get to sit on the couch all day and then demand participatory healthcare. With rights come responsibility.  Get up off your ass; be physically engaged in your life, not just your care decisions.

For those inclined toward a more delicate view, and perhaps a more formal model, Jessie Gruman’s Center for Advancing Health has developed a terrific ten-piece framework for patient engagement:

  • Find Safe, Decent Care
  • Communicate with Health Care Professionals
  • Organize Health Care
  • Pay for Health Care
  • Make Good Treatment Decisions
  • Participate in Treatment
  • Promote Health
  • Get Preventive Health Care
  • Plan for the End of Life
  • Seek Health Knowledge

For details see this post with her speech about it and links to the full framework documents.

Should patients be allowed to read their doctors’ notes, access lab result and see images they aren’t necessarily qualified to assess?

“There’s several levels of thinking about this.. here’s entitled according to the law, and there’s what I think makes sense.”

“How do we improve healthcare?  And I assert that we have to start there, because we are approaching a genuine healthcare famine.”

Lucien Engelen, who hosted TEDx Maastricht… he’s going to be running the REshape academy in September, where I’m going to be doing my ePatient bootcamp.

He said that in the Netherlands, which is not a giant country, by 2025 they’re facing a shortage of 400,000 nurses.”

“Now anybody who plans to be alive in 2025, and there probably will be more humans in the Netherlands than there are today, is going to be facing a care shortage.  So it just seems unavoidable that that we’ve got to hand people a lifeline to try to help themselves.”

My doctor, Dr. Danny Sands, is famous for saying, “How can patients be engaged in their care if they can’t see the information?”

“For the patients to be a second set of eyes, to check the data quality, costs the healthcare system nothing more and will reduce defects.”

What responsibility do you think healthcare users need to take in demanding change in the healthcare system?

Well, that varies a lot.  All my life I’ve felt that demands aren’t necessary until one has asked courteously, offering partnership in creating the change and doing the work.

But there are times when the establishment simply will not listen.

It happened for hundreds of years with women’s suffrage.  It happened with the civil rights movement: folk singer Malvina Reynolds penned a cheerful ditty “It Isn’t Nice” about what you sometimes have to do for justice:

It isn’t nice to block the doorway
It isn’t nice to go to jail
There are nicer ways to do it,
But the nice ways always fail

Although I followed folk music in the Sixties, I didn’t hear that song until this year, in the context of yet another movement: gay rights.  It was mentioned in an episode of our great PBS series The American Experience the Stonewall Uprising.

One of the gents who was in that movement recounts what gays eventually had to do to be granted the right to live and let live.  Will we see a day when patients march in the streets?  Gays chanted “Out of the closets and into the streets!”

Will patients march, chanting “Out of the johnnies [US slang for hospital gown] and into the streets – stop the killing now”?

Personally, I’d prefer the chant “Let Patients Help.”  But if healthcare ignores that, who knows.


End of Part One

In Part Two of my interview with e-Patient Dave, we’ll look at, among other things:  Capital I’ Innovation in healthcare, healthcare heroes, why Dave became a healthcare advocate (and the responsibilities that entails) and changing the world.

[ There’s a lot more to come from e-Patient Dave, so keep your ears tuned, and your eyes peeled – conversely, you could make things easy on yourself and either follow this blog or subscribe to the RSS feed! 🙂 ]

For more information on e-Patient Dave, check out:

(Kim and Dave Skype’d between from their homes in Sydney and Boston  on July 26, 2011. This is Part One of a multi-part series.)

Part Two of this interview can be found here

Capital I Innovation Series Introduction

It’s meHealth I’m Talking About

The move from eHealth to meHealth

eHealth can and should provide options for how stakeholders (consumers, care givers and healthcare managers) manage and interact with the healthcare system across geographic and health sector environs.  That said, if there is anywhere that Capital I Innovation is essential, I believe it is in the field of eHealth.

The term eHealth has become nigh on ubiquitous.  And yet, it is somewhat nebulous, as it can be perceived as being perceptively less than personal.  meHealth, however, is different. It demands that I, you, we, take it upon ourselves to take responsibility.

Responsibility for what?

Responsibility to expect and demand that all healthcare stakeholders at the local, regional and national – and, dare I say, international – level to work together to ensure that affordable, effective healthcare is available to one and all.

e-Health uses the internet and related communication technologies to improve healthcare delivery, collaboration, diagnostics and treatments, while reducing errors and costs.

Thus far most arguments for eHealth take-up have relied upon Web 2.0 solutions such as MedHelp, MyGP, patientslikeme and Hello Health – each excellent initiatives.  Unfortunately, these arguments for adoption, though interesting, have not been compelling enough to engender a rush towards mass adoption, at least not by healthcare service providers.  But, with the advent of Web 3.0 solutions, this situation should soon change.  It must.  However, this will only happen if all stakeholders take on the responsibility of demanding the change; this is the time for the change to meHealth.

In my recent conversation with ‘father of the internet’ Vint Cerf, we discussed eHealth. Vint remarked ,

“From my point of view, there is no doubt that having records which are sharable, at least among physicians, would be a huge help.  When people go in to be examined, they often have to repeat their medical histories.  They don’t get it right every time, they forget stuff.  Yet the doctors are not in a great position to service a patient without having good background information.  I am very much in favour of getting those kinds of records online.

If we were able to harness the electronic healthcare system to provide incentives for people to respond to chronic conditions, which are generally the worst problems we have in healthcare – whether its heart disease, diabetes, cancer, [obesity] – to take better care of themselves, then we would reduce a lot of the system costs, simply because we had a more healthy population.”

Unsurprisingly, I agree with Vint.  However, regardless of how involved individuals are in bettering their meHealth, we cannot ignore the fact that pressure on the healthcare industry is rapidly increasing, as is the cost of provision.  It is in this area where new technologies can be of great import by enabling the healthcare sector to operate as an effectively co-ordinated, interconnected system, which:

  • Lowers costs and eliminate wastage of time and effort
  • Lowers costs on families and communities supporting the elderly
  • Enables integrated healthcare delivery systems
  • Consolidates medical records/services
  • Enables the viewing and following of healthcare processes
  • Enables single points of contact, self service and self help
  • Ensures cost and service level transparency
  • Enables disparate IT systems and processes to connect and co-ordinate with each other
  • Supports vast consumer and care provider populations
  • Removes duplication of healthcare efforts, expenditure and solutions
  • Enables confidential electronic information to be securely and seamlessly accessed and shared, by the right person at the right place and time, regardless of their urban, suburban, rural or remote location
  • Enables effective co-ordination and oversight of national E-Health activities
  • Supports informed policy, investment and research decisions
  • Enables secure flexibility within mobile services, using such tools as PDAs and VOIP processes
  • Reduces errors and inefficiencies

All the above points are important, but the final one may be the most vital of all. Why?

Because in Australia, in 2010, approximately $3 billion was wasted in avoidable annual expenditure.  Australia has a population of over 22.5 million, the US has a population of nearly 311 million and China has a population of over 1.3 billion – you do the math.

Do you need more convincing?  How about this. Annually in the US approximately 225,000 people die as a result of erroneous medical treatments and hundreds of thousands are made worse by being misdiagnosed or given inappropriate treatment.  Added to that, the costs of medical problems caused over 60% of all personal bankruptcies filed in 2007.  These are just a few of the reasons why reducing, if not eliminating, errors and inefficiencies is imperative.

I think most of us are agreed that making these changes would be a good thing. So how do we do it? Its a big ask I know. And yet, it must, and can, be done. What is needed is a plan, and here is my To Do List. I welcome any and all who are interested in moving this debate forward to add to this list.

In next week’s post, we will look at eHealth and meHealth from the perspective of patient advocate ePatient Dave.