The Pew Internet & American Life Project conducted a national telephone survey of 2,277 adults in May 2011 and found that 83% own some kind of cell phone. One-third of these cell phone users (35%) own a smartphone (eg, iPhone, Android, Blackberry, Palm). These smartphone users utilize their mobile devices in new ways, incorporating them into their lives, accessing the Internet, sending photos and videos to others, using Twitter, and engaging in video calls and chats.

Many of these smartphone owners have also downloaded one or more of the 17,000 health care apps currently available. Twenty-five percent of these apps are free. Research2Guidance, a consulting firm, predicts that as many as 500 million people will be using healthcare mobile apps by 2015. Assuming that this prediction is correct, it means that people resonate to owning smartphones and empowering themselves as healthcare consumers with these interactive apps. Among the individuals polled for this research, 33% indicated that they want to manage their health records online and 32% said they want to have telehealth visits with their doctors.

Another study, by the Consumer Electronics Association, polled patients on their willingness to communicate with their providers using a smartphone or tablet. The study, The New Role of Technology in Consumer Health and Wellness, found that 36% of consumers say they want to be able to send information to their doctor wirelessly; 33% want to manage their health records online; and 32% want to have telehealth visits with their doctors for remotely based procedures and surgeries such as angiograms, head scans, CT scans, and skin cancer examinations.

Right now, consumers indicate that their favorite smartphone applications include: body weight scales, vital sign meters and gauges, devices that record and track fitness programs, and nutrition. Some of the newest popular apps are Cancer.Net Mobile for the iPhone, iPad and iPod Touch, which patients can use to manage their cancer treatments (this app covers 120 cancer types); AsthmaMD, which is used to record asthma attacks, track medications and note triggers; Pocket First Aid, which provides education and instructions on CPR, choking, burns, and diabetic emergencies. It can also track family medical information, and emergency contacts. There are apps for testing vision; apps that provide clinical data and check medication interactions, and apps that provide explanations of medical terms.

More than any other single device or tool, the smartphone with its audio, video, built in cameras, and access to the internet right at your fingertips, has the capability to help patients take charge of health issues, engage more effectively with providers, and become educated, empowered, and interactive in healthcare. So power up. Doing so could save your life.

The most interesting statement I found in this brief news article was, “The e-mail did not indicate why the company decided to terminate its PHR service. The company advised users to download their PHR as a .pdf file and save the document for their records.”

Ah, a PDF. Yes, that’ll make it extremely easy to get that data into some other PHR (sarcasm alert).

And that led me to understand the underlying problem with all PHRs today, and the problem PHRs have always had — nobody trusts the companies who offer them, and few people understand what they are or why they should care.

I kind of chuckle when I hear a company describe that a part of its business strategy is the personal health record. I first heard of a PHR back in 1999, when I worked for drkoop.com, at that time competing for the #1 spot as the leading consumer health website with WebMD (drkoop.com lost). Drkoop.com’s management had this brilliant idea that everybody would want — and pay for — a personal health record online. In fact, this was the founding principle of the company that eventually became drkoop.com (as seen in one of their SEC 10k filings from that time):

Our company was founded in July 1997 as Personal Medical Records, Inc. During 1997 our primary operating activities related to the development of software for Dr. Koop’s Personal Medical Record System.

To say that the idea of a personal health record (or personal medical record, as they called it) has been kicking around the Internet for a long time would be an understatement. (Drkoop.com dropped the idea altogether after a falling out with their PHR development partner, HealthMagic.)

But nobody pays much attention to history on the Internet. One of the most frustrating components of consulting for companies today is their inability and unwillingness to listen and to learn from the companies who’ve come before.

Had the folks who were running Revolution Health at the time really dug into the market for personal health records, they would’ve seen exactly what we’ve seen now for well over a decade — nobody’s clamoring for them. Nobody is going to their doctor and saying,

“Gee doc, if only I had some way where I could manually enter in all of this data and try and keep it updated on a regular basis, and ensure that the company I choose to enter all this data in with is (a) going to be around 5 years from now and (b) is going to allow me to export it in a way that is actually helpful, I would be so much happier and healthier!”

Of course, let’s assume that I’m wrong. Let’s assume the 2011 IDC Health Insights’ survey of 1,200 consumers done earlier this year showing only 7 percent of respondents ever having used a PHR, and less than half still using one — which is virtually unchanged from when they conducted the same survey 5 years ago. Let’s say consumers are chomping at the bit for this kind of personal tracking ability.

What will they find?

Poor quality systems that haven’t undergone real-world testing with real-world data. As we discussed back in April 2009, PHRs simply don’t work as intended with real-world data. If one of the largest companies in the technology world with some of the brightest engineering talent on Earth can’t get this right — Google Health, in this case — what hope do we have?

Well, it seems, not a whole lot.

A March 30 article over at eWeek describes how Google is unlikely to move forward with Google Health. Instead, it’s likely to be relegated to the backburner, along with all of its other failed experiments. Of course, Google won’t comment on this, and they never will. Every company trumpets to every media outlet possible when they release a product, but mum’s the word when it comes time to acknowledge the product was unsuccessful and they’re shutting it down (or worse, putting it into a static state with little future development).

This is exactly the lack of transparency and openness consumers are fed up with, and one of the primary reasons patients are leery of trusting their personal health data with a single company. You don’t know whether it’s going to go under, sell your health data (even in aggregate form), or simply decide to quietly stop supporting its service in any meaningful way (without actually shutting it down). You may get your data out, but it may only be as a PDF. Today, there are still no widely-implemented standards for sharing health data records (although that is changing, slowly).

There are some notable exceptions, which I should call out here so that we can end on a positive note. PatientsLikeMe.com — which just opened up to everyone for any health condition — is quite transparent about what they do with your data. They aggregate it, they sell it, that’s how they make their money. And apparently it’s working, since they’ve been around now for many years.

Electronic medical records, like Microsoft’s HealthVault, are also a different animal, because they have tended to focus on addressing more of the needs of the provider, health care systems and hospitals, rather than just consumers. Paying attention to both sides of the equation — how data enters the system and how data gets out — is so important, yet something a lot of products in this space underestimate or pay nothing but lip service to.

I think it’s time to finally put the idea of a global personal health record to bed, permanently. We already have lots of individual personal health records floating around out there, tied directly to our personal health interests. And while it would be nice and more convenient to have them all somehow communicate with one another, companies who own all these individual records seem reluctant to explore the possibilities of enabling such communication. There are a lot of reasons — some valid, some not — for this reluctance.

Perhaps this will change in a more open and transparent future. But I won’t be holding my breath.

Also check out Denise Amrich RN’s article on the Google Health rumor mill, Have rumors of Google Health’s death been greatly exaggerated?

Another guest post from Lisa Gualtieri, PhD, ScM, following her much-commented earlier post.

Lisa is Adjunct Clinical Professor in the Health Communication Program at Tufts University School of Medicine. Lisa teaches Online Consumer Health and Web Strategies for Health Communication. A social media user herself, Lisa (Twitter, LinkedIn) blogs on health and is Editor-in-Chief of eLearn Magazine, where she blogs on education.

I had an interesting juxtaposition of events. While waiting in Peets, a coffee shop in Lexington Center, I watched the friendly discussions between the baristas and customers. I then went to a doctor’s appointment, where a nurse stood typing at a laptop asking me a series of questions, including “Are you in pain?” and “Do you feel safe at home?” She didn’t look at me once as she read and typed.

Eye Contact with the Patient, Not the Computer, Is Paramount

Shouldn’t the intimacy of these questions mandate more eye contact than the less consequential discussions about today’s special roast and the weather? This is not jumping on the “customer” bandwagon, which has extended to some schools using “customer” instead of “student”. This is a matter of respect when asking personal questions and effectiveness at eliciting a meaningful response.

Ted Eytan, MD, MS, MPH, empathized with my experience. After his practice implemented an EHR, a patient told him, “You’re the only doctor who has looked me in the eye in the last 6 months of coming here.” Ted said, “It was like a dagger in my heart to hear that, and I am sure it would be for any other clinician.”

Computers in the Examining Room Should Not Be “Mysterious Intruders”

Danny Sands, MD, had great insights on what happens when a computer is introduced into the examining room. He said, “Interacting with a patient alone is a two-way conversation.  However, when there is a computer in the room, it is part of the conversation.  It both processes and provides information, and, because of that, it must be positioned in such a way that it can be a part of the conversation without being an imposition, just like if there was another person in the room. Ideally, with a laptop or desktop computer, the computer would be at the apex of an equilateral triangle with the human participants at other vertices.  With a tablet computer, the computer should be held by the user as they sit side-by-side.  In either case, the screen should be easily visible to both (but it should be possible to temporarily shield it from the patient when necessary). Too often, as in the situation you describe, the computer is a mysterious intruder in the room, and the goal of the clinician is to interact with the patient only as a means to the end of entering the appropriate information into the computer program.  This can be blamed on poor room layout, bad user habits, and badly-created user interfaces. Some would also blame the bizarre reimbursement system that rewards quality documentation above quality care.”

EHR Etiquette Should Include “Emotional Contact”

Pamela Katz Ressler, RN, BSN, HN-BC, similarly, believes medical professionals have prioritized information gathering over communication. She said, “While it is essential to collect information to arrive at a correct diagnosis, simply collecting information without addressing the human experience creates disconnection instead of connection; often leading to dissatisfaction by both the patient and provider.”

Joe Kvedar, MD, agrees with Pam about distinguishing between collecting necessary data and connecting with patients. When patients invest so much to get to and be in a doctor’s office, he believes, they deserve emotional contact including eye contact. Joe and I discussed telemedicine and how the “technical artifact of how cameras are placed on laptops” limits gaze awareness.

The different technologies for physician-patient communication all convey different types and amounts of information, Joe went on to say, and too much focus is on tools, rather than human communication. I remember when airports first used kiosks for check-in, and I answered questions on a screen about transporting packages that had been given to me by strangers. While I appreciated the speed of check-in, I felt less safe boarding a plane, hypothesizing that trained airline personnel might detect terrorists by tone of voice, facial expression, or body language. Just like, as Joe said, doctors obtain an enormous amount of information from looking at their patients.

Beverley Kane, MD, who teaches about EHR etiquette and worked with Danny on the first email guidelines for physicians, agrees. She noted the irony of how people tell their hairdressers more than they tell their doctors. Beauticians are often far more responsive and more sympathetic.

EHR’s Do Not Inherently Dehumanize; It Depends on How They Are Used

Following my experience with the nurse, the doctor walked in, shook my hand, and looked at me almost the entire time. He looked up one piece of information on the laptop in the corner – no triangle here – but it took under a minute.

My day ended at my acting class, where, coincidentally, we did exercises that focused on eye contact. In one, we tossed a ball at someone only after establishing eye contact; another was about the impact of physical distance and observation on intimacy. These exercises increased my own sensitivity to how powerful eye contact is, and how different stimuli, like touch and sight, can reinforce each other. Ultimately, better healthcare outcomes will come from verbal and non-verbal communication that is as attentive as in the coffee shop – or at the hairdresser’s.

Guest post from Lisa Gualtieri, PhD, ScM, Adjunct Clinical Professor in the Health Communication Program at Tufts University School of Medicine. Lisa teaches Online Consumer Health and Web Strategies for Health Communication. A social media user herself, Lisa (Twitter, LinkedIn) blogs on health and is Editor-in-Chief of eLearn Magazine, where she blogs on education.

“On the Internet, nobody knows you’re a dog” was the caption of the famous cartoon by Peter Steiner in the July 5, 1993 issue of The New Yorker. The same is true of patient stories on health Web sites: nobody knows who really wrote them. In the case of Lifestyle Lift, the company agreed to pay a $300,000 settlement last year to New York State because their patient stories were employee-generated.

Patient stories can provide information, support, reassurance, and practical advice, which is why 41% of e-patients read the commentaries and experiences of others online. The three primary types of patient stories are the unedited user-generated stories in online health communities and patient blogs; professionally edited or “as told to” support stories; and promotional stories.

User-generated stories in Weight Watchers’ Message Boards provide context to questions and responses and add a sense of reality and dimension to the person posting, making authors, and therefore the content, seem trustworthy. This is not isolated to weight loss sites but is true of cancer support sites like ACOR.org and countless other online health communities and patient blogs. Similarly, in the more carefully crafted and edited support stories, such as Livestrong.org’s Survivorship Stories and Weight Watchers’ Success Stories, the details in each story make the person the story is about seem trustworthy. Any inaccuracies in the user-generated or edited stories may not be intentional and do not necessarily detract from the helpful or supportive nature of the story.

Promotional stories are not always easily distinguishable from other types of stories on health Web sites. While Weight Watchers’ Success Stories focus on strategies, RediscoverYourGo uses stories to promote replacement surgery. The stories are about the debilitating pain and the process of finding a doctor, undergoing surgery, and engaging in an active post-recovery lifestyle. According to the developer, they are from “100% real patients.”

But not all stories are from 100% real patients. Lifestyle Lift’s employees fabricated testimonials; actual patients’ comments are now on their Web site, they claim. The Web site features before and after pictures, and, not surprisingly, the after pictures have better lighting and composition and the people are smiling, wearing flattering make up, have changed their hairstyles and clothing, and even put on jewelry. Well, no law against that.

A hotly debated solution to discerning the credibility and reliability of health Web site content is seals. HONCode and U.R.A.C. are the seals that are best known for health Web sites, but many sites don’t have them, most people don’t know to look for them, and they don’t have widespread recognition. While it was not a surprise that neither of those seals were on Lifestyle Lift, it was startling to find their own seal, “The Lifestyle Lift Code of Internet Conduct and Assurance”. It pledges that “comments and photographs are from actual clients” and that they are “proud to take a leadership role in establishing new standards of Internet conduct and communications”. Was this seal created in response to the settlement? It was larger and more prominently displayed than the HONCode and U.R.A.C. seals usually are.

No matter which side of the seal debate you are on, seals do not authenticate individual patient stories. Unless you know the author of a story, you never know for sure if it is true. As Trisha Torrey points out, patients want to believe stories because they are desperate for information. Ultimately, most stories are from real people sharing authentic experiences, and the best way to weed out the others is to use common sense, be skeptical, check with a trusted medical professional, and remember that there are Lifestyle Lifts that haven’t been caught.