Instant Is Not Real-time

Facebook, Inc.
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Should Enterprise software be like Facebook? That’s a question Salesforce CEO Mark Benioff recently raised. While reading Dennis Howlett’s analysis, Dennis makes a very simple but easy-to-overlook point about the difference between instant media and real-time media. It’s an important point, one I believe gets lost in the noise and hype about social media.

INSTANT CONFUSION

One of my main focuses is health care adoption and employment of software for improving collaboration and communication among patients and doctors and nurses. It’s important, therefore, to understand the property differences between media and the different contexts, conditions and processes needed for successful deployment. What works for consumers (Facebook) doesn’t necessarily work for business.

One of the properties of media like Twitter and Facebook has to do with time. Twitter and Facebook statuses are instant (at least when there are not server errors). Instant is exactly that: immediate, without regard to relevance. Real-time, however, has to do with relevance. In an enterprise, what matters are information flows – and without context and relevance, information is just data.

Real-time is more than just anytime (which is what instant is) – I need the right information delivered at the right time within the right context throughout the right process.

This distinction between instant and real-time is critical because any software developed must take into account the purposes and needs and contexts in order to ensure proper user experience and appropriate results.

So no: I don’t believe Enterprise software should be designed like Facebook. It follows then, that any software designed for patients and hospitals and doctors and nurses must not confuse themselves with consumer applications.

BUILD IT RIGHT AND SPEAK CLEARLY

Therefore, any healthcare enterprise analogues of media like Twitter, must take into account the difference between instant and real-time. The applications must take into account the sociological and informational needs of clinical processes. Otherwise, disaster is certainly built-in.

Software lock-in is a huge problem in technology. I fear that philosophical lock-in of social media philosophy may be one our time’s greatest threats. (As an illustration of what I mean, the Privacy Is Dead mantra is, I fear, just one self-fulfilling instance of social media fallacy – it’s one of the most dangerous myths propounded and accepted by superficial thinking these days – it’s a dangerous mind-virus.)

We need a clear language when discussing technology – especially media technologies. Confusing instant with real-time is sloppy thinking. In a health care context, it’s downright dangerous.

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How to Make Health Care Remarkable – the @ePatientDave Interview

epatientdaveDave deBronkart is a Freedom Fighter. In 2007, Dave battled metastatic cancer and emerged a passionate advocate for leveraging the Web to connect patients with the content and support and inspiration they need to cope with the human consequences of disease.

The Web has brought forth new ways of connecting the world and brings with it questions and answers about how to safely and effectively extend the power of health care from face-to-face meetings to remote but important regions of human experience. It’s important for us to understand the integrative nature of health care: no single perspective will yield approaches that work. Rather, we will need the perspective of all participants.

Nevertheless, the view of patients is paramount – how they respond to disease processes, what they need in terms of information and care and why their unique psychological responses to treatments must be carefully appreciated. We need, therefore, for patients (who are ourselves) to be actively engaged in the evolution towards remarkable health care. Because if health care isn’t remarkable, it’s probably dangerous.

Therefore, since patients are central to health care, we must listen to them as they offer their time and passion and ideas. The novel concept of epatient is part of the new landscape of discussion currently taking place in health care. The idea of “e-patient” has emerged in recent years. But what exactly is an e-patient? What does the “e” stand for? It may not be what you think. Which is why I asked Dave to tell us his story, his definition of e-patient and his hopes about health care in the 21st Century.

THE INTERVIEW

You seem to have received a lot of attention as a passionate leader in e-patient health. What got you started in your advocacy?

When people asked JFK how he became a war hero, he said “It was easy – they sank my boat.” Same with me: I was minding my own business, then a lucky shoulder x-ray incidentally revealed kidney cancer that had spread to my lung – and other lung, and skull, and femur and arm. I was dying. And suddenly I really cared what could make a difference, and I pulled out every trick in the book, every resource at my disposal.

I used the internet in every way possible, from making sure I had the best possible doctors to finding other patients to forming social communities and reading my hospital data online. And when it was all over, I learned that what I’d done was the definition of an e-patient.

So I started calling myself one.

It’s funny, because some people think I started e-patients.net. Hardly. To the contrary, my doctor was a member. I’d already been blogging as “Patient Dave,” so I just added the e.

What’s your definition of an epatient? What are the major hurdles patients have with respect to online interactions?

“Doc Tom” Ferguson, who died in 2006, was the founder of the e-patient movement and creator of the term. He said e-patients are Empowered, Engaged, Equipped and Enabled. Lately many people have added Educated, including about Evidence.

Today the first E’s are being empowered and engaged in your care. In a way the internet is almost incidental: people use the internet for everything, even ordering pizzas, so we naturally use it as patients too.

Note that this empowering patients has nothing to do with disempowering physicians and nurses; this is participatory, collaborative, a partnership. That’s why, when Ferguson’s “e-Patient Scholars Working Group” incorporated this year, we didn’t name it Freedom From Physicians – it’s the Society for Participatory Medicine. In Ferguson’s white paper, Conclusion #7 was “The best way to improve healthcare is to make it more collaborative.”

Hurdles? The main hurdle most new e-patients overcome is, as my doctor puts it, “embracing knowledge symmetry” – the idea that they have something to offer, that knowledge flow isn’t a one-way street. That’s the Empowered e. And then there’s realizing it and getting off your butt, getting engaged in your care and your overall well-being.

It’s about realizing that we as individuals, empowered by the internet, now have much more to contribute to our care than we realized.

A hundred years ago – perhaps even fifty – access to real medical information indeed came only through medical schools. But today the internet has connected us with facts and with each other, and that has truly changed everything. If you doubt this, read the e-patient white paper – written mostly by physicians – titled “ e-Patients: How They Can Help Us Heal Healthcare.” It’s free, at the top of e-Patients.net.

Of course, access to information online doesn’t make you brilliant any more than access to books does. It enables you, if you’re equipped. So the next hurdle for some is to realize they don’t know everything. But if you’ve got a participatory empowering physician, that’s easy: you ask “What do you think about this?”

What have been the reactions to your efforts by healthcare professionals? What’s your sense of the industry’s receptivity to the e-patient movement in general?

Providers have been great to me – at least the ones who speak to me. :-) And I really can’t speak for or about anyone I haven’t spoken with.

I’ve seen enough change in industry – since before the first PC – to know change can be hard. Imagine spending your life getting good at the waltz, then learning to twist, then falling into a mosh pit. Yikes. That’s why Kaiser has reported that of the $6 billion they spent on their EMR, only 1/3 was spent on the equipment; the rest has been people issues.

The great  @TedEytan (TedEytan.com) put it this way: “People don’t know how to dance to this new music yet. Teach them.” And that is the job of the Society for Participatory Medicine. Call it “dancing lessons” if you want.

Which technologies in health care do you feel are the most effective in enhancing the ongoing relationships between patients and healthcare professionals? Are there some characteristics of patient-provider relations which technology can’t address?

Email and social media are already making it infinitely more efficient for patients and providers to connect for non-urgent issues. Kaiser has great data showing that email reduces office visits and lets questionable symptoms be raised earlier, because the logistical hurdle of that first touch is so small.

I just about puke when I hear dino-physicians whine about “I’m not gonna do email [which my patients want] because insurance won’t pay me, and I’m not doing anything I don’t get paid for.” This is the sound of a dinosaur dying – dying of FFSS, “Fee For Service syndrome.” It is the bellows of dysfunction, echoing forth from a system that is optimized for anything except getting care delivered to the people who need it. I am about to start calling for providers and patients alike to protest in disgust against the symptoms of FFSS.

The hell of it, for providers, and yes I mean you, hospital executives and physicians and everyone, is that if you are stodgy and behind the times, you may get blind-sided: your market (your customers, your patients) is (a) adopting new tools far faster than you are, and (b) moving through the age pipeline far faster that you realize.

Look, this year’s med school graduates cannot remember when there was no email! Yet just this week a friend’s surgeon’s office claimed “We don’t have access to email.” Really? A business in 2009 that doesn’t have email? Or were they just lying?

Either way, those days are ending. Bye-bye, FFSS. Consider: there is no clinic environment (Mayo, Geisinger, etc, where the docs are employees) that doesn’t do email. Why? Because when you’re paid to keep people well, you don’t mind hearing from them.

But no technology will replace the human skills, human intuition, human touch. It’ll be a long, long time before technology replaces Dr. Danny Sands, Dr. David McDermott, Nurse Practitioner Mee Young Lee.

In The Innovator’s Prescription Christensen and Hwang talk about the difference between “precision medicine” and “intuitive medicine.” Precision is the stuff that’s well understood now, from colds to knee replacements and even much cardiac surgery, I’m told. Those things are pretty much handled routinely. But the mind, heart, and compassion of a great nurse or MD will not be replaced by robots.

What’s your dream for the future of patient care?

Participatory medicine: a new, empowered partnership that is far more satisfying to both providers and patients. The Society’s new Journal of Participatory Medicine will advance our knowledge of how to make patient-provider relationships more effective.

Not surprisingly, the Journal is wide open to contributions from people who have any kind of work in this field. Because it’s new, we’re open to well thought out exploratory and observational submissions as well as controlled trials. We have a fully transparent peer review process, open to all sorts of participation, including reviews by patients. So speak up, submit, contribute!

Our vision – my vision – is that in partnership, we’ll all have a lot more fun and feel less burden – because we have new partners.

FOLLOW THE LEADER

If you’re interested in how we can lead health care forward – as patient or provider or entrepreneur – you can follow Dave on Twitter:  @ePatientDave and subscribe to his blog.

Today and tomorrow (November 12, 13 2009), the FDA is holding Public Hearings about Social Media. It would have been nice to see much more patient representation, since there is a very real chance that both FDA and the industries it regulates are each overlooking the wider opportunities they have to be remarkable online and offline.

My personal concern, is that the shadow of  Edward Bernays – specifically his legacy of Social Engineering to consumerize and shape mass opinion and perception and behavior – will continue to follow Pharma into the 21st Century.

Pharma’s task is to produce safe and effective products and services for patients. FDA’s task is the ensure that Pharma’s claims and its products are in fact safe and effective. But both groups were forged in the mass medium broadcasting days of the 20th Century. The Web is radically undermining that model and demands radical re-thinking about the generation, exchange and consumption of information. We must have the participation of Freedom Fighters like epatients who can liberate us from the manipulative forces and tendencies and temptations which 20th Century media brought forth into our world.

It will take the brilliance and commitment and creativity and ethics of the life scientists and doctors and nurses and engineers (and marketers) to set the tone for how Pharma and related industries continue to heroically fight disease and help alleviate the suffering of tens of millions of people. To that end, we will need to create communities where patients can exchange perspectives with the people who dedicate their lives to improving the quality of health care.

Thank you, Dave for telling the world your story, for your dedication to helping those who suffer, and for giving hope in a time of upending change.

So what are your views on the e-patient movement? Is it on the right track? Who are your heros who are helping us move toward a healthcare system we can call remarkable?

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An Interview of @EndreJofoldi of HealthMash

The Web abounds with health care information (good, bad, ugly). In fact, for all practical purposes we have an infinite abundance of content on the web. And this abundance has produced a scarcity of meaning, relevance and reliability. So any attempts to provide searchers of content are welcome efforts.

THE WORLD WIDE HEALTH WEB

HealthMash is one of the newer search engines for health care content and media by a team from Hungary and the US. HealthMash returns an array of finds and displays them within categories. Here in the US, most of the Web products that receive the most attention come out of Silicon Valley. What goes unnoticed is just how much remarkable work gets done around the world. Hungary, for example, has traditionally had one of the highest per capita rates of mathematicians. So it’s encouraging to see these products being developed internationally. And in the arena of health care and social software, Dr. Bertalan Mesko ( @Berci on Twitter) is doing amazing things with ScienceRoll.

HealthMash enables users to search generally, or ask the engine to return results garnered from Twitter or for Video for Images or Drugs and other contextualizing formats. Here’s how HealthMash presents Cystic Fibrosis within its Clinical Trials results (click to enlarge):

HealthMash Search Result for Cystic Fibrosis

Contextualizing information is an important process, especially since we now have so many sources of potential information. I won’t review the reliability of the results here, but I recommend test driving the interface. Another service that attempts to bring context and curation to health care search results is iTriageHealth.

For now, I’ll let Endre Jofoldi of HealthMash (@EndreJofoldi on Twitter) explain more about the product he and his team are working on. My hope is that these interviews engender entrepreneurial interest in the what I’m starting to call the Health Web. By the way: If you’re a developer and seek funding, I recommend following Robert Scoble’s  Twitter List of Venture Capitalists. Yes, Twitter has its uses. :)

THE INTERVIEW

You seem to be passionate about the Web and building custom search engines. Tell us about yourself – where are you from, what you do and what got you interested in health care and web technologies and communities.

The HealthMash “virtual team” in the US and Hungary consists of experts in medical informatics, computational linguists and software developers. Our individual team members have worked on many health related projects at the National Institutes of Health and the National Library of Medicine, thus we have first hand familiarity with the challenges of the health arena. Although most of our team are relatively young and healthy, a couple of the “old timers” have had enough health problems themselves and in their families, to have special empathy for all patients. So as you can see, we are naturally interested in web technologies and health communities.

HealthMash, which bills itself as a Revolutionary Health Knowledge Base and Semantic Search Engine, piqued my interest. What inspired you to build this type of search  engine? What does HealthMash do that other health search engines don’t? What technologies are under the hood?  What are your plans for HealthMash?

There are thousands of good health sites on the Web, like Medlineplus.gov and the MayoClinic,com, however they are limited in their scope and coverage. There are also tens of thousands of sites that offer questionable or harmful health advice. At the same time, we also know that even the best health practitioners can’t keep up with all the new developments in biomedical research and apply all that knowledge to the individual needs of patients. Our inspiration was our own health concerns and the inevitable health problems of our families and friends and fellow human beings, to envision a web site that offers the most comprehensive and most reliable health information to enable informed personal health decisions:

  • Thus, our goal with HealthMash has been to interpret the meaning of health related queries and, using our proprietary semantic search algorithms and bring together all kinds of potentially relevant information for the user (trusted health information, News, clinical trials, the research literature etc.)
  • Another important goal has been to support user exploration and discovery. HealthMash facilitates serendipity and discovery via our automatically generated  Health Knowledge Base which contains millions of relevant associations between health concerns, treatments, drugs and alternative medicine approaches, to name a few.
  • It is the sum of all of the content and technological innovations “under the hood”, and our passion for promoting healthy living, that distinguishes us from the competition.

Do you see it primarily as a stand alone search engine or are you considering developing social features into the service?

First I would like to turn this question into a bit different direction. HealthMash can be utilized by other search services. Our Explore and Discover section is also available through an API for third parties to embed it into their medical databases and search systems. To answer your question, developing social features into HealthMash has been planned from day one, but not implemented yet. As a matter of fact, our Hungarian health sites already have some social features in them (http://varoszoba.hu means “Waiting Room” and http://dokim.hu means “My Doc” ).

What other projects are you currently working on? If you had the necessary resources to build your dream health care technology/application, what would it look like and what problems would it seek to solve?

HealthMash keeps us pretty busy, given that it is in beta stage. And of course we also have to make a living, so we are working on “bread and butter” custom search and federated search engine projects for paying customers both in Europe and in the USA. If we had the necessary resources – and frankly we are hoping that a major player or venture capital firm will provide those resources to us sooner or later – our “dream” health care application would be to add sufficient intelligence to HealthMash to be able to answer any health related question and do it in all languages and all countries of the world.

Thank you, Endre. Keep us up-to-date. And good luck to your team. For more, you can always follow  Endre on Twitter.

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Healthcare’s Google-Facebook-Twitter Platform

Image representing Facebook as depicted in Cru...
Image via CrunchBase

Can’t we just have one place on the web where all of us around the world can congregate to acquire reliable health care content, connect patients with each other, have conversations, trade experiences and otherwise partake in the vastness of health care?

That certainly is a dream – an idea which many patients and families and professionals ponder. After all, Google, Facebook and Twitter respectively demonstrate the power of Search, Social Media and Real-time Connection to accomplish a whole host of objectives. What if we had a health care version of such a triad, unified into one platform? Is it do-able? Or, perhaps more importantly, is it necessary?

A GINORMOUS WEB WITH NO CENTER

As tempting as it may be to have a mega health care social platform, I think such a hope is wrecked by the reality of the Web. The Web is an ever-expanding confluence of machines and people and protocols and media. Like a consciousness, it has no Center, no single brain cell that we can point to and say Here it is, the center of our mind! And yet, like a consciousness, it produces the seamless experiences of awareness and connection and action which we view through our browsers and mobile devices and wherever else the Web infiltrates.

Perhaps the very model for any Web platform for health care communities of content and people lies right in the artful sciences beneath health care itself: the evolutionary underpinnings of networks of the tiny cellular gadgets that supply our lives. Yes, our bodies do have central nervous systems, but life owes itself to the vastly distributed cascading of events which aren’t necessarily centrally-controlled. That is, after all, the wonder and power of our universe’s serendipity. The web of life may be metaphor for the web we started spinning years ago.

So I wonder if our primary challenge in weaving a Health Care Web is understanding the nature of evolutionary systems. That perhaps we need to overcome our linear and strict architectural ways of thinking and building, and seek organic views of the Web.

Historically, in our efforts to wage war against dangerous bacteria and viruses, we have taken a decidedly mechanical approach: discover a vulnerability and attack it. It works, for a time. But then subtle mutations succeed and replicate and the vulnerabilities of our tiny enemies become strengths and we start to lose the war again.

So just as we may need radically different approaches to infectious diseases – approaches which advance natural processes versus stemming them – so too may we need a radical re-think in how we work with the Web. Rather than hoping to overlay a single giant complex that dominates the landscape like a Big Mother, we aught to consider the power of local networks and communities, learn to harness de-centralization and discover how to cull order out of chaos.

In many regards, we already are doing these things. Those of us who use media like Twitter have learned to appreciate the value of curation and we’re always seeking out and playing with toys which help us streamline and enhance our consumption and production of information. Patients seeking health-related content or community similarly need ways of finding the right channels.

Perhaps, then, a key feature of health care online is providing media which improve the skills of patients in how to best derive order of out of chaos and separate verifiable fact from dangerous idiocy. How to accomplish such feats? One way is through individual, localized efforts on the part of patients, providers, technologists, librarians, entrepreneurs – charged with large boluses of initiative and courage.

ALL HEALTH CARE IS LOCAL

What we may need at the large scale isn’t a giant Google-Facebook-Twitter mashup for healthcare. Maybe what we need are media and tools which connect social graphs of people and databases and communities; which enable face-to-face communities which can be weaved back into the Web; which give permissions to patients and family members to port their data however they see fit; which enable providers to be bright facets at the critical nodes of key connections; which integrate emerging technologies and re-mash them into usable interfaces for expedient and curated information.

The fact about online health care communities is that they are, well, communities. Which is to say that their success depends on the particular dynamics and values of the communities. A service which offers forums for different health-related topics may house an amazing Diabetes group but fall short on Schizophrenia. Furthermore, patients and family members experience illnesses in their own unique ways: what may be a great community for someone with breast cancer may be ineffective (or even dangerous) for another.

We have many ways to go with the Health Care Web. We can’t necessarily busy ourselves with one silver bullet. So I offer one tip to the general public: advocate for change at the local level, using public social media to inspire passionate tribes of talented change agents. We can do that much now, without having to wait for the FDA or some other governmental agency to figure out how to hit the update button on Twitter, let alone how to piece together a Health Care Web.

If we can’t get our own family physician to connect with us on just one social medium, how can we connect the multitude of patients and providers globally?

What do you think? Is a Google-Facebook-Twitter Platform of Health Care achievable? Is it even necessary? Perhaps most importantly: is it something we should even desire, or fear?

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Power Dynamics & Virtual Health: Protecting Professional Boundaries in an Unbounded Web

Virtual Health – however that’s defined – has become a hot topic lately, especially in light of the rapidly evolving two-way real-time Web. Power dynamics – the interplays between patient and provider – must be protected in order to safeguard patient rights and protect their dignity, privacy and well-being. There’s more to virtualized practice than may be apparent on the surface.

Here are some thoughts, including an explanation of what I am (half-humorously) calling the “intimacy-boundary membrane”. [Link to video]

Power Dynamics & Virtual Health: Protecting Professional Boundaries in an Unbounded Web from Phil Baumann on Vimeo.

Patients are increasingly demanding online ways of interacting with their providers. As social media evolve, improve and proliferate, the ePatient movement will continue to expand and the healthcare industry will have to develop ways to meet the demand.

This movement, however, will have to ensure that it does not overlook the important behaviors all health care providers must express. It will also have to mature so that we aren’t left with a virtual health care landscape that is little more than a circus of amateurs. Experience matters more than content.

But social media is also rapidly shortening the spaces of intimacy and boundaries between people. This means that as health care professionals interactively enter the Web, the tension between intimacy and boundaries will increase.

We could say that there exists a safety zone between intimacy and professional boundary. These zones have traditionally been worked out for in-person clinical relationships. Online, however, we have a long way until we establish a collective understanding of how these technologies affect our virtual health care experience.

Since the space is shrinking to a thin wall, I’ve decided to call this problem the intimacy-boundary membrane. How do we go about protecting that membrane? Is this metaphor useful? You tell me.

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How Candles & Tacks Can Help Us Re-Think Economics, Healthcare & Everything Else

Daniel Pink recently gave a TED talk about the insights into motivation gleaned from new research into the  Candle Problem (read up on it before continuing). Functional Fixedness is a common problem with the way our brains are wired. The Candle Problem, and the novel research Daniel Pink discusses, demonstrates how the fundamental assumptions that we make underpin our ways of thinking. Often, they undermine our efforts to make a better word.

When thinking about how we accomplish our mutual goals, what assumptions are we making? How many books and theories and political lines of thought rest on assumptions that were never vetted via scientific challenges?

How many fields could this new understanding of our motivations serve better?

  • Could we work towards a better economic system?
  • Could our provision of health care be vastly improved?
  • Could Marketing become more human and effective?
  • Could organizations develop more creative environments for their employees?

Ideas are incredibly influential – for good or ill. How many of the ideas we have in our heads are misleading us in almost everything we do? Counter-intuition is a difficult but important skill to develop.

Whether it’s Health Care or Social Media or the growth of our Finance Sector or Economic Theory, don’t we owe it to ourselves to vigilantly seek out and question the basic assumptions we make?

How can you use these observations about the Candle Problem to improve (or radically upturn) what you do with your business or your life?

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Healthcare Technology Isn’t Social…Yet

Healthcare professionals are technologists. Social media involves technology. But there’s a substantial gap between the general public’s use of social media and the Healthcare industry’s presence along the spectrum of social networking spaces. Why? Shouldn’t health care professionals be on the leading edge of online services and community-engagement?

Here’s a short video giving a partial explanation for the gap. (The second video is a bonus. for my  #hcmktg followers):

Patients deserve the best kind of healthcare in the world: the Web is part of our world – in fact it’s fast becoming the biggest part of our world. Amateur health care is a dangerous trend – therefore, it’s critical that healthcare professionals work extra hard to establish best practices for online transactions. And that can only be done by healthcare professionals extending their role from clinical technologists to social technologists.

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