We had to include this powerful interview in our Year In Review. From E-Patient Connections 2011, renowned Soprano, Charity Tilleman-Dick shares her inspiring story with Pixels and Pills.

If you’ve seen it already, it’s definitely worth watching again.

by Jason Brandt (@jasondmg3)

For over half a century, the Breathalyzer has given law-enforcement officials a portable, fairly reliable instrument to test for, and prevent, driving under the influence.

However, when you start to listen to the critics of the technology complain that diabetics, dieters, hyperventilaters, mouthwash users, cold medicine users or smokers can have incorrect results (either damaging the sensors or inaccurately finding the subjects to be more, or less, inebriated than they may actually be) – you start to wonder:

If a Breathalyzer can pick up these other compounds, why can’t it be made to test for more than just alcohol?

Well, of course, you wouldn’t be the first to have this thought. It’s being called “disruptive” – but isn’t this the nature of all technological advances? Their goal is to make data available more rapidly and with less difficulty.

Obviously, diagnosing diabetes is an obvious place to start, as the existing technology already can pick it out sometimes. Additionally, you’ve probably heard over the years that dogs have been trained to identify the breath of people with cancer. Lung and breast cancer are being “sniffed” out in clinical tests now. Liver disease is, kidney disease, heart disease, even schizophrenia may be in the cards.

I can speculate about others, even though I’m not a scientist. Mental illnesses like anxiety, stress and panic attacks are often accompanied by physical manifestations that could be measured by checking how rapidly and shallowly you might be breathing.

And of course, there are pulmonary conditions like asthma, pneumonia, bronchitis and maybe even the common cold. Measuring the frequency and depth of breathing, in addition to the compounds exhaled, can help diagnose and manage conditions.

While we’re at it, perhaps it could compare the ambient temperature with your exhalation to see whether you’re running a fever.

I can envision the morning where puffing into a mouthpiece – part Breathalyzer, part spirometer, part thermometer – is as much a part of my routine as hopping on the scale. My simple efforts of a couple of seconds, using my scale, exhaler, and Magic Mirror (see Krissy’s Nov. 10 post), would be rapidly, brilliantly, noninvasively working to collect, analyze, report and share a wealth of information about me – all while I’m still stumbling around half asleep.

Now, if only one of them could floss for me and remember to pack my gym bag.

by Russ Ward (@russcward)

What does it feel like to have a heart attack? What’s the cure for muscle soreness post-workout?  What one daily habit has the most positive effect on your health?

These are real questions asked on the popular question and answer site Quora. Question sites such as Quora, Yahoo! Answers, and Fluther are proliferating on the internet. On these sites members can ask or answers questions on a wide range of subject matter. Other sites such as Healthysparx are more narrow-focused.

Crowdsourcing opinions and guidance for health and wellness information gives patients much more control over their own health care than they ever had before. It also empowers them to help other patients, especially when a question matches their experience or expertise. But, a lot of time answers may be inaccurate, incomplete and inconsistent. And, everyone’s experience can be different.

Pharma has an opportunity on the question sites, especially as patients seek an authoritative voice and accurate information. But, is pharma prepared to participate?

Customers are going to talk and research products so it makes sense for pharma to figure out how to be part of the conversation. A lack of social media guidelines will likely limit participation for the time being, but it doesn’t mean question sites should be ignored.

Pharma can train social media spokespeople to respond with consistent, compliant messages, such as a link back to the company website. Because question sites often show up in the first page of search results, having a presence and quality content can bring patients to other properties such as a branded Facebook page or YouTube Channel.

Right now, the bigger opportunity lies in listening. Even under legal scrutiny, pharma marketers should be tracking and monitoring question sites to gather valuable business insight.

Users reveal data about themselves. What is every marketer looking for? To understand their customer’s pain points. On question sites, users are communicating the problems they’re looking to have solved. Keeping an ear to the ground can pinpoint opportunities for education, new customer segments or product uses or reveal disconnect between product messaging and public perception.

Learn who your influencers are. Who are your most vocal adversaries and advocates? Monitor frequency of occurrence to understand who and what is being posted and to ensure message accuracy. Gain insight into influencers and craft a communication strategy to ensure your products are promoted properly and that consumers have the education they need to make informed decisions.

Connect with people at key decision points. For the mother deciding which cough syrup formula is right for her congested three year old, receiving a coupon or information on how to keep her child comfortable during illness from a brand she trusts could influence a purchase decision. Companies such as New York-based Hunch are developing algorithms to recommend certain products when people pose commerce-related queries. By knowing what patients are asking, pharma companies can respond appropriately and ensure their actions and answers resonate with customer needs.

Pharmaceutical companies have a challenge responding via any social media, but they can get the listening component in place and develop internal social media guidelines that enable them to proceed in a compliant manner.

Any questions?

by Krissy Goelz (@Krisgoelz)

There are two types of people in the world – those who play by the rules and those who bend or break them. When it comes to patient compliance, it’s not quite so clear cut. Even the most responsible by-the-book individuals have moments when they don’t heed doctor’s orders.

Why? Well, it’s human nature.

Recently, physician and author Katrina Firlik explored and debunked the top five medication adherence myths she encounters. Failure to comply – whether that’s following a doctor’s orders, taking medication as directed or filling prescriptions – is an evergreen pain point in healthcare. As long as there are patients, there will be incidence of non-adherence or mal-compliance.

Patient-focused technologies and other technological advancements may be the cure for minimizing non-compliance and improving health outcomes. Whether technology serves as a reminder to take the right dose of medication at the right time or facilitates its delivery, there are tech tools that can drive better health outcomes.

What are some of the issues and how can technology help?

The type of disease or condition predicts non-compliance. Failure to comply isn’t limited to a particular disease class or condition – it runs the gamut from patients needing to complete a course of antibiotics to those requiring daily medication such as cholesterol-lowering drugs.

Rather than rely on sighting the plastic seven-day-a-week pill box, patients can take advantage of high-tech reminders such as call center technology that delivers automated medication prompts to proactively alerts patients to take medication at a defined moment during the day (such as before breakfast).

The poor and undereducated are the biggest offenders. Compliance issues traverse socioeconomic boundaries. Of the 600,000 Americans who have bypass surgeries each year, more than 90 percent are unable to change their lifestyle to mitigate health risks. In the face of do or die, if people aren’t willing to undergo the rigors of change, how can health care professionals move the needle and get patients to understand their critical role in their own care?

Video games can help improve compliance by adding the element of fun to educational materials. An interactive learning environment also gets patients more involved in their care and increases “information stickiness.” Social and mobile technologies can actually help patients form healthy habits either by encouraging healthy behaviors through a supportive network or by using apps that monitor medication and behavioral events.

Patients are forgetful. Sure, some people forget to take their prescriptions, but others simply fail to fill prescriptions in the first place or they don’t refill them as directed. There are multiple reasons why this occurs: failure to realize improvements they’ll experience as a result of taking a particular medication, feeling that they no longer need the drug, cutting medication in half to extend the prescription, financial concerns or simply deciding they don’t want to do it.

For patients taking medication for chronic conditions, reducing the drop-off rate and improving refills can be aided through tech tools such as electronic journals that help them monitor and log side effects or improvements. RFID technology or embedded sensors can impact compliance rates by “beeping” to remind patients to take or refill their prescription as well as sending communication to their health care provider to let them know patients are taking their medication at the right frequency.  In addition to improving patient compliance, it can provide physicians with data to help them better understand events that could have serious health consequences.

Physicians should take the lead. New technologies such as RFID sensors can provide insight into what happens outside the practice, but complying with doctor’s orders is ultimately the patients’ responsibility. However, there are tech tools doctors can use to drive compliance.

Prescribing technology and processing prescriptions electronically can improve compliance rates (no more prescriptions lost at the bottom of a handbag!) by simply automating the process. Drug and patient databases can track activity such as when a prescription was last filled and if it is time for a refill. Physicians (and pharmacists) can lend further support to patients through other forms of electronic communication such as email or text messaging to address patient concerns with prescriptions or simply as another point of contact to keep patients engaged in their own care.

Education, patient reminders and lowering costs are the Holy Grail. Much noncompliance is just the result of humans being humans, whether that’s avoidance, forgetfulness, thinking they know better than their physicians, or lack of instant gratification. Keeping health top of mind whether that’s through iPad apps, mobile reminders or a strong supportive network is the root of compliance and can make the difference between a patient that follows doctor’s orders and one who does not.

Technology can actually help overcome all these challenges, but just like the medication that is prescribed, it will only work if people actually use it.

by Jason Brandt (@jasondmg3)

What if there were a coordinated healthcare system in which teams of caregivers focused on sharing information and insights about their mutual patients and preventing health issues before they became critical?

Is it a utopian dream or perhaps the mission statement of an advocacy group? No – it’s the original vision developed two decades ago by the founder of CareMore, a Cerritos, California-based company that serves more than 50,000 Medicare Advantage patients throughout the Southwest. The company’s 26 “care centers” are vastly different from a traditional medical practice, and may offer lessons for achieving greater patient compliance.

CareMore’s model is based on the application of an old systems-management principle first developed at Bell Labs in the 1930s and refined by the management guru W. Edwards Deming in the 1950s: You can fix a problem at step one for $1, or fix it at step 10 for $30.

Most U.S. healthcare is repair-centric, not prevention-centric – big health events occur in the lives of patients, and the system is geared to try and fix them. But what would happen if we prevented the big events in the first place?

This “upstream” intervention approach – as opposed to treating “downstream” outcomes – means CareMore’s overall member costs are 18 percent below the industry average.

What does it look like? Consider these examples:

• A woman with a history of congestive heart failure notices she’s put on three pounds in 24 hours – a sign of possible fluid in her lungs. CareMore noticed too, because her scale wirelessly communicated with the clinic.
• A diabetic who cut his foot and was referred to CareMore had a nurse practitioner clean and dress his wound – and then check on it every two days until they were certain the risk of infection had passed. Had the patient not been able to drive or catch a bus, CareMore would have sent a car.

If that sounds like a luxury take on traditional healthcare, it’s actually just the opposite. CareMore found that, among elderly patients, as many as one-third fail to show up for their doctor appointments because they lack the network of friends and family – or even basic fiscal resources – to make the trip. So this massive area of fundamental noncompliance – getting to a doctor before a small problem turned into a big one – was often replaced with just calling 911 when they got sick.

Against that backdrop, providing transportation for these patients was very cost effective.

The problem of noncompliance isn’t limited to missed appointments. Patients leave prescriptions unfilled, medicines untaken, exercise-and-diet regimens unfollowed, and symptoms unnoticed and unreported.

CareMore’s largest innovation may be in deciding that noncompliance is their issue, not the patients’. And the numbers show that it works: their hospitalization rate is 24 percent below average; hospital stays 38 percent shorter; and amputation rate among diabetics 60 percent lower than average.

Others are watching: In August, CareMore was acquired by WellPoint, which serves 70 million people nationwide directly or through subsidiaries, and has plans to expand the CareMore model.

Of course, it’s easy to draw a distinction between broad-based preventative care and pharma, and the CareMore example may not translate perfectly to the world of pharma marketing and patient communication if for no other reason than pharma is not in a primary-caregiver role. But there is now significant evidence that making compliance our issue rather than the patient’s pays long-term benefits, both in terms of cost and patient outcomes.

by Krissy Goelz (@krisgoelz)

At this point, news editors must have a macro so they don’t have to type out a lede about how Apple products are breaking ground in another field. The latest is this: the iOS operating system’s security capabilities might just take telemedicine and put it in the average consumer’s pocket.

Recently Apple announced that its FaceTime video chat can be made to be HIPAA compliant. (See the ZDNet conversation in which Apple confirmed this here.)

The Health Insurance Portability and Accountability Act of 1996 (which is what HIPAA stands for) “provides federal protections for personal health information held by covered entities and gives patients an array of rights with respect to that information. At the same time, the Privacy Rule is balanced so that it permits the disclosure of personal health information needed for patient care and other important purposes.”

Simply put, the purpose of HIPAA is to enable your patient data to be used for your care while making sure that its privacy is protected against other access.

FierceHealth opines that “The security assurances also may widen the use of FaceTime beyond the traditional clinician-to-patient model, to include provider-to-provider consults, nurse-to-physician powwows, combined treatment video sessions with multiple clinicians, and other scenarios that right now require a special, secured telemedicine connection.”

What would all this talk really look like in practice?

1. It means that a homebound, agoraphobic, long-distance, or embarrassed patient could have a consultation with a healthcare professional using their iPhone or iPad in their own home. They could walk the device around to show the HCP the life issues that affect their condition – anything from what the food in the fridge is, to what the handicapped-inaccessible bathroom looks like.
2. It means that HCPs can directly connect with each other to discuss patients.
3. It means that HCPs and patients can combine in varying numbers.

What does all this really mean? Well, I can tell you that…

1. If I were a technology provider in the telemedicine field, I’d be very, very worried. Would it make sense to outfit your hospital with state-of-the-art videoconferencing equipment for tens or hundreds of thousands of dollars when you could just switch your preferred mobile device to an iPhone?
2. If I were a professional social network like Sermo, I’d be hard at work to integrate these capabilities into my service.
3. If I were an NGO working to bring healthcare to underserved areas of the world, I’d be in talks with Apple right now about how to economically provide my people on the ground with iOS devices that could connect the field clinics with clinicians around the world.
4. If I were a patient-support organization, especially one that focuses on a tech-savvy population, like Planet Cancer or Young Survival Coalition, I’d be figuring out right now how to get a video teleconference set up with a top clinician.
5. If I were a pharmaceutical company, I’d be figuring out how to do something technologically groundbreaking and totally patient-focused in one of my disease areas of focus, by sponsoring one of the above efforts.

If you’re reading this website, I bet that at least one of those bullet points hit home for you.

What are you waiting for?

by DJ Edgerton (@wiltonbound)

Thinking back just 20 years ago, there were a limited number of communication options: the phone call, the letter, the fax. A person’s digital habit – though not thought of in that way – was limited to television or radio, save for a few early adopters exploring computer technology. Today we have a staggering breadth of communication and digital tools, but are they making it easier to communicate?

Not necessarily. People’s digital habits vary across generations and locations, making it tricky if not impossible to come up with a one-size-fits-all communication strategy. You can have the right message, but if it is delivered through the wrong medium you won’t achieve your intended results.

It is critical to understand how different audiences are using various social tools and digital technology, determine what they expect to get out of it, and then tailor message delivery accordingly. By addressing the digital habits of consumers and health care practitioners, marketers and other communicators can ensure messages reach their intended audience, deliver value, and inspire action while getting a better return on their communication investment.

A good place to start is by looking at different demographics. Millennials and Baby Boomers are both social media and technology aficionados as is evident by the saturation of users, but their digital habits and expectations differ.

Millennials are less likely to use email, saying it’s too slow or cumbersome. However, Baby Boomers are likely to react positively to email communication such as a newsletter delivered to their inbox. Having not grown up in a world of brevity and online distractions, they might have more patience to read something longer than a 140-character tweet or short text messages.

While social media is ubiquitous, there are communication nuances that need to be taken into consideration. Millennials or Gen Y are comfortable with the rapid pace of social media, but they may not respond to a friend’s text messages or Facebook post immediately for fear of appearing “un-cool” or without anything better to do. Yet, they expect companies to respond immediately to their inquiries. Meeting this expectation requires regular monitoring and designated social media experts to ensure timely responses.

Same-day or next-day feedback across all digital communication platforms is a fairly common expectation. However, older adults who are still navigating new technologies and social platforms may appreciate an auto-response that acknowledges their inquiry or lets them know when to expect a response.

Also, even though both groups may be avid Facebook users, what they expect to get out of socializing in that manner can vary. For example, younger users may use the “like” function to demonstrate association with a brand, celebrity or particular thought. Cool by association is a popular currency with this demographic and what their friends say and do is likely to be influential. Older people are also influenced by peer experience, but they may expect something in return, such as receiving a coupon as a reward for their participation.

A younger audience may place greater value on interactivity, which is why games are appealing to many digital users. Even while watching TV, many people are surfing the Web or looking for places to interact as they multitask. If you’re seeking to capture the attention of younger workers or patients, consider integrating apps and other tools that encourage interactivity into the marketing mix.

As smartphone and tablet adoption continues to escalate, paying attention to mobile habits is also important. Healthcare practitioners today can access health records or electronic prescribing applications right from their handheld. Tech-savvy physicians may present patients with an iPad while they wait to be seen to help them learn more about their condition or treatment. Those practitioners catering to a geriatric community might have more success forgoing digital communication altogether and using more traditional outlets such as printed pamphlets and newsletters.

With an expanding set of ways to reach your target audience, it’s essential to consider digital habits and demographics to determine the best mode of communication. Television advertising, comprehensive websites, online newsletters, video, email, mobile or social networks are all viable platforms. However, ensuring success requires addressing the digital habits of your audience.

by Jason Brandt (@jasondmg3)

At this fall’s SXSH Social Health Unconference, which teamed itself with the E-Patient Connections conference, social media expert Shwen Gwee of Edelman gave us his “five P’s”, describing what he saw as emerging trends that sum up what patients want and expect of our social digital healthcare experience.

I thought the features he highlighted were particularly apt and thought much more about how to describe them more fully. It’s something of a miniature bill of rights, or at least a bill of expectations, for what the average digital consumer now wants an online health service to deliver.

So now, with apologies for making the title sound like something out of Dr. Seuss, I present my thoughts on: Shwen Gwee’s 5 P’s

1. Personalized. We expect an experience to know about us and deliver something different to us than it will deliver to our neighbor. We want the experience to know that its subject is unique. Our devices can know our location and even size up our physical attributes (thanks to webcams and technology like that in Microsoft’s Kinect). Sometimes this worries us, but when it can help us manage our health better, we want it used to the best of its ability. Think about how many large corporations are shepherding their employees through online health-management programs in exchange for insurance reductions. When an employee enters the results of a basic physical, they’re assigned a personalized plan to help them improve their health (and reduce the corporation’s insurance costs).
2. Participatory. We expect to be able to see how our results stack up to our neighbor’s, and we expect to have the ability to share our results with our neighbors if we want. We don’t want to exist in a vacuum. We want to be able to have the option of joining a larger community to whatever extent we wish. To do so, that larger community must first exist, and we must have the ability to easily participate in it. Think of patient and caregiver blog networks like Carepages.
3. Peer-to-Peer/Patient. We expect to be able to learn from our neighbors, not only from the experts. We want empathy from those who have walked in the same shoes, not just halfhearted sympathy from a professional who reads case studies about people with our condition. Most of us are accustomed to using online social networks to stay connected to friends and family, but in these mainstream networks we’re as unlikely to find people with our particular condition as we are in day-to-day life. Specialized social networks make it easy for us to find – well, to find Patients Like Me.
4. Preventative. We expect to maintain and improve our health, not just get it fixed when it goes wrong. We’ve gotten accustomed to this with our cars; why would our own bodies not deserve the same? Even the above-mentioned corporations have come to see that an ounce of prevention is cheaper than a pound of cure. We desire peak performance and offerings like Live Strong, full of information, social connections and data analysis, meet that need.
5. Passion. We expect to work with healthcare providers who care very deeply about our own health and well-being, since we certainly do ourselves. With the advent of social media, the personality of a healthcare professional or even an entire hospital network or healthcare corporation can shine through. While healthcare is an extremely data-driven process, it’s also an extremely personal, emotional one – and we want to feel satisfied in both the quantitative and qualitative aspects of our care.

What do you think? To me, these 5 P’s are a great reminder of what e-patients need and want – a great checklist to refer to when working on projects meant to help them. How do your projects measure up?

by Briana Campbell (@MsMatchGirl)

Imagine the embarrassment of your sexual dysfunction being made public.

Imagine the worry, especially in this tenuous economy, of your employer finding out that you have a genetic condition that could grow to be debilitating.

Imagine trying to protect your family’s privacy only to discover that your child’s schoolmates have learned of his disability.

Emotional, financial, social privacy and security: that’s what we all expect of our medical records. Coming in a close second to the effective, affordable treatment itself is the expectation that that treatment, and the condition it’s treating, will remain completely confidential.

The introduction of electronic medical records have offered many benefits to both healthcare professionals and patients. EMR are easier to search, easier to find potential drug interactions,  take up a tiny fraction of the physical space, make record-keeping much faster and easier, and allow us to move or share our records among our care team.

But do they risk the safety of our data? The answer to this question depends on two things. First is the infrastructure. Is it built without loopholes, with adequate encryption and protection?

But the second element – the one that I have heard much less about – on which our EMR security depends, are the people involved in the process. Whether our records are on paper in a folder in a filing cabinet, or data saved in a digital file, we rely on the physicians, physician assistants, nurse practitioners, nurses, clerks, receptionists, and all others – not only from our practitioner’s office, but also from our managed care provider, our banking institution, and all others who access our files.

We assume that everyone working with our files has been adequately trained, is working on adequate equipment, has adequate time to do their work, and is adequately following adequate procedures. That’s a lot of assumptions, it seems to me – and even the best structure can’t fix human error.

I’m impressed by the steps that the industry has taken since its inception, which have resulted in about half of all physicians using EMR. But I haven’t heard much about the people side of things. What are the training protocols? What are the background checks? Who are the people who have access to my records – how many different points of entry are we talking about?

We’ve got a bank with a crackerjack vault… but who’s guarding it, and how good are they at it?

I don’t suspect doctors or their staff of widespread ill intent – far from it. But what is the potential for error? Where do those decisions points exist, and how are they being safeguarded?

I’m not raising my questions to make anyone afraid; just the opposite, I’d love to find official answers to put these questions to rest for good. Here at Pixels & Pills we’d love to do an interview with an EMR expert to answer these questions straight from the horse’s mouth. Are you one? Do you know one? Please get in touch.

by Sven Larsen

Are you ready to make a life-or-death decision?

Most decisions aren’t as dramatic as the one the main character faces in the movie Sophie’s Choice – deciding which of her children will live or die at the hand of Nazi prison guards – but how you approach health care privacy can be the difference between health and sickness.

Privacy as we know it, in part due to social media, is changing. People are publicly proclaiming that they are out of work, like a certain presidential candidate or joined a local weight loss group without batting an eye – sentiments that would have seen out of place for our parent’s generation.

While talking about health maladies used to be unthinkable – Billy Crystal poked fun at his mother for whispering the word “cancer” because she was unable to say it out loud – there’s a growing acceptance with sharing health-related information. Breast cancer is now not only openly discussed, but people wear pink or participate in walks to show support or that they’ve survived the disease. Raising awareness has translated to increased funding, enabling research and progress to be made.

Giving up privacy online when it comes to sharing health-related information is slowly coming into fashion – and it should, because conversation can lead to progress. People used to only share bad news from the doctor among family and close friends, but today more people are using social communities to share or research the challenges they’re facing or gain support from other people going through a similar experience.

There is still some trepidation when deciding how much information is too much. Some of that stems from fear of being penalized by insurance companies, though new legislation loosens the reigns of being judged for a pre-existing condition. Others may be hesitant to share information about an illness lest they be stigmatized by co-workers or their employer.

However, breaking the barriers of online privacy can impact health outcomes. When patients share information, we can use that information to uncover new treatments, receive better care, be more educated and have more productive conversations with our physicians. Communities like Patients Like Me and CureTogether connect people going through the same thing, inviting them to share their condition, how it affects them, the treatment they are receiving and how effective it has been. Not only can this community support be helpful to patients, but analyzing the patient-contributed data can spur new insight and research discoveries.

Greater transparency in health care can also be the right prescription for improved preventative care. For example, educating the public on the connection between healthy eating and lifestyle choices are lower risk of diabetes, cancer and heart disease.

It can be scary to think of giving up your privacy, but we’re heading to a more exposed society. More doctors are moving to electronic records, making data more accessible and easier to analyze and identify patterns or trends. Being able to pair that information with patient observations and experiences can deliver on the true value of digital technology – helping patients make more-informed decisions and live a healthier life.

Is privacy on its way to being a relic of the past? What’s holding you back or what would incentivize you to share private health information?