“Traditional market research about advertising is often wrong,” said Yadav, noting that his experience as an ethnographer put the fundamental tool of social science – self-reporting – into question. “I’d spend a lot of time with someone, and then give them a survey, and [on the survey] they were not the same person,” said Yadav. “People don’t have the ability to express emotion…if I ask how you feel, the response is how you think you feel.”

To bypass the speech/articulation process, Australia-based Neuro Insight uses steady-state topography (SST), which records electrical impulses in the scalp via a sensor-bedecked visor worn by test subjects. Put in front of a television and shown advertisements, subjects’ brain waves register their levels of “approach” or “withdrawal” from a given ad, which lets marketers predict the ad’s effectiveness, or adjust the content to prevent a dive into withdrawal. Neuro Insight has pharma clients – GSK is listed on the company website – but the case studies were limited to consumer brands, an unfortunate but familiar trend at digital pharma gatherings.

Moving from brain waves to search results, Steve Rotter, VP marketing at Brightcove, a web video hosting and service provider, cited data from Forrester proclaiming that “videos are 53 times more likely than text pages to appear on the first page of search results.” But the written word isn’t completely dead; Rotter said adding a transcript of a video to a webpage dramatically improves SEO and helps visitors find what they’re looking for more quickly. Brightcove has clients including AstraZeneca, Abbott, Genzyme, Roche and GSK, and is currently working on a platform for videos that senses which specific device is being used by the target consumer or patient, and optimizes or renders the video based on that device, said Rotter.

Doug Seifert, president and CEO at Syandus, an “experiential learning” company, demoed a COPD simulation game targeted to physicians. Created for Pfizer and Boehringer Ingelheim (the companies co-market the blockbuster COPD drug Spiriva), the demo was one of the most impressive displays at the conference. The game allows physicians to adjust variables and see how patients with different levels of severity or disease-state would respond. A doctor can make a patient smoke cigarettes and climb stairs, and then watch what happens in the body, for example. Seifert said simulations work because “humans are pattern recognition machines,” and “pattern recognition creates behavior change.” Besides, “endorphins are released” when people play games, a word Seifert defined as “a series of interesting choices.”

The conference ended on a somewhat hypocritical note, in that Facebook – “a distribution platform that promotes authentic sharing” – struck all sharing of its presentation from the record. Conference emcee Ritesh Patel, Chandler Chicco’s digital and social media lead, asked that all remarks from Facebook’s John Patten be kept within the walls of the Alexandria Center’s conference room, given the company’s upcoming IPO. As a result, the tweeters in the room (conference tweets can be found at #CCCDigital) were silenced for the duration.

No two patients are alike, but drug-makers may not consider how different a single patient’s perspective can be when viewed over time. A patient’s progress through disease management is a journey, and perceptions change over time. Changes in perceptions influence the meaning of “usability” and can have tremendous implications for how a drug delivery system supports the patient. To understand this concept better, consider two different points during the patient journey – a newly diagnosed patient and a patient further along with their condition – as examples of how different usage must influence the design of a drug’s delivery system.

The New Patient: Struggling to Adapt and Learn
Early on, patients who use delivery systems in their medical therapy struggle to cope with significant life disruptions. They often do not feel very well physically. Emotionally, they may be fluctuating between fear, anger and deep concern or depression. At the start of their disease management journey, these patients are asked to take on new responsibilities for their condition, learn new and sometimes difficult tasks, and become experts in managing parts of their disease, such as administering their own medication.

What does this mean for a drug company? Ease of use is a critical consideration; pharma should ensure that drug delivery requires as few steps as possible, guaranteeing that users can learn, remember and quickly master the process. Especially for the newly diagnosed, drug delivery devices need to provide clear, absolute confirmation that they were used properly, and that the medicine was successfully delivered. Any ambiguity heightens patient anxiety and will leave them questioning whether they received the proper dose. Such anxiety can lead to overdosing and create doubt that the device – and the drug – is trustworthy or effective, which quickly erodes adherence.

For a patient in an early stage, “ease of use” should translate to “ease of training.” With the rise of biologic therapies, patients rely on the support of healthcare practitioners and family to learn how to self-inject, for example, as they acclimate. Optimizing a drug for both self-administration and demonstration means manufacturers need to carefully consider how humans learn, and the differences between processing information by watching others, versus doing things ourselves. Failing to support these early stage requirements can lead patients to abandon therapies before they even have a chance to take hold.

Further Along: Staying Faithful
Later in the disease management journey, patients return to a more stable condition and reasonable quality of life. They have mastered their drug regimen and delivery system – but now the patient is more demanding of how the device supports quality of life. Reduced anxiety makes room for motivations based on convenience and the confidence that “I have this disease under control – at least for today.” As patients settle into this “new normal,” such attitudes can lead to skipped doses and lapses in adherence, often throttling the patient back to a state where the disease manifests itself more seriously.

At this point, the delivery system needs to not only continue to support efficiency with minimal steps, but also, and for different reasons, it must be designed based on convenience and lifestyle enhancement. Patient feedback must be considered differently and used to select a delivery design that encourages and incentivizes patients to remain adherent. For instance, compliance metrics, goal-oriented achievements or physiological measures might be tracked in order to encourage adherence, helping patients control their disease and improve their condition.

The Journey Determines Everything
Realizing that patients are on an ongoing journey is an important step in understanding the complexities behind how user-centered design can support adherence. Armed with this awareness, pharmaceutical companies are better enabled to select and develop safe, reliable and desirable drug delivery solutions.  These considerations can help to address the shifting nature of what usability means for any type of patient we may become, while traveling on our individual disease management journey.

Aligning humanistic objectives with business incentives is often the sine qua non of effective community activism. This year’s Rare Disease Day – hosted in the US by the National Organization for Rare Disorders (NORD) – attempts to do just that. Some 630 patient organizations, government agencies, research centers and corporations have signed up to be Rare Disease Day Partners this year, and both the NIH and the FDA are serving as venues for events on February 29 and March 1, respectively, under the banner of solidarity.

A symposium for patients and researchers at the NIH will “focus on things that are really new and cutting edge in rare disease research,” says David Eckstein, senior health scientist administrator at NIH’s Office of Rare Disease Research. Topics include the utilization of stem cells and next-generation gene sequencing, and what that will mean for rare disease research. “We’ll also be talking about new research paradigms,” says Eckstein. “People have always talked about ‘bench to bedside,’ but it’s really bench to bedside and back; there’s a lot of information that flows from what’s learned in the clinic, back to the laboratory.” Topics will be targeted to a lay audience, to encourage patients and their families to attend.

During an extended lunch period, NIH hopes attendees will visit table exhibits and posters, and to interact with researchers and pharmaceutical companies. “We’ve opened up the ability of all these patient groups to advertise their existence and make others aware of who they are and what they’re doing,” says Eckstein. For the NIH Rare Disease Day agenda, click here (events and presentations will be streamed live here).

FDA, for its part, is hosting a Patient Advocacy Day on March 1. Dr. Gayatri Rao, acting director for the Office of Orphan Products Development (OOPD) at FDA, emphasizes the importance of collaboration – and solidarity – across stakeholder groups, as a means to solve the challenges posed by rare diseases. “Patient Advocacy Day will bring together patients and the different centers and offices within FDA that regulate products for rare diseases…with the goals of engaging the patient community, increasing awareness about translating research into therapies, and providing education on the roles and responsibilities of the FDA in the development process,” says Rao. For the FDA agenda, click here.

Outside of Washington DC, a slew of research institutions, community centers, local government groups and pharmaceutical companies are hosting their own events, from wine-tastings, film screenings and a marshmallow roast, to marathons, concerts and a virtual “Handprints on the Hill” campaign, sponsored by NORD, that will encourage participants to sign a letter to President Obama and members of Congress that supports rare disease awareness. To bring attention to specific cases of rare disease, every signatory can personalize the letter. In Europe, where Rare Disease Day originated in 2008, the European Organization for Rare Diseases (EURORDIS) will host and facilitate numerous events across many countries.

Pharmaceutical companies like Genzyme, Lundbeck and Biomarin have planned special events around Rare Disease Day. Mary Dunkle, NORD’s VP of communications, points to Genzyme’s “mini-marathon” scheduled for February 29. “Genzyme has a team of employees who run the Boston Marathon every year, to raise money to donate to NORD on behalf of all rare disease patients,” says Dunkle. “This year, they’re doing a mini-marathon…they’re going to be running some very significant distances at four different Genzyme facilities, and each facility will host a small program.” NORD will be on hand to distribute literature, and to speak on the Rare Disease Day theme of solidarity.

The “Raise Your Hand to Fight Rare Diseases” campaign, happening for the third year in a row, asks interested parties to visit NORD’s website and “Raise Your Hand” by clicking on an icon. For every click, Lundbeck Worldwide, the underwriter of the campaign, will donate $1 (up to $10,000) to NORD’s general research fund. Last year’s $10,000 donation went toward a research grant for systemic sclerosis, a rare autoimmune disorder affecting an estimated 49,000 people in the U.S. Silvia Laura Bosello is leading the study on systemic sclerosis, which is aimed at improving the identification of abnormal B-cells and administering medications that are known to positively affect the production of B-cells. Siren Interactive, a marketing firm specializing in rare diseases, is asking a network of clients, colleagues and friends to visit crumblymorsels.com and build a cookie to share online. For every cookie shared through Facebook, Twitter, Linkedin or Google+, Siren will donate $1 (up to $1,000) to EURORDIS and NORD.

Increases in the number and activity level of patient organizations in recent years have helped to spotlight the business opportunities for pharmaceutical companies. “I spoke with PhRMA recently, and they said that there are now about 460 rare diseases being worked on by the collective membership of PhRMA, which is the biggest number they’d had, ever,” says Peter Saltonstall, NORD’s president. “More and more of the large companies who have never been in the rare disease space are now making a commitment.” Eckstein says pharma has become more interested in creating niche areas for business. Quite a few [pharmaceutical companies] are realizing that it can be profitable to get into the rare disease market,” says Eckstein. “We’re doing as much as we can to encourage that, and to encourage patient groups to work with pharma, to ensure that clinical trials are well-enrolled, so that trials can be done quickly, which saves everybody money and gets things through the FDA faster.”

The Rare Disease Day theme of solidarity this year speaks to the importance – and benefits – of collaboration between patients and pharma. “If you take all of those rare diseases and total up all of the populations, there are about 30 million Americans that are affected by rare diseases,” says Craig Kephart, president of Centric Health Resources, a direct-distribution company focused on specialty pharma and orphan diseases. “By joining together these 30 million Americans, they make up a large group of people that need to be heard. We need to address effective and meaningful ways of helping them lead better lives.”

In 2011, the patient’s clout as a stakeholder was firmly established, as reflected in several industry conferences. What’s next for the patient in 2012?

In 2011, many healthcare organizations came around to the idea that patients should be included in discussions that had customarily taken place about them, but without their direct participation. This shift was evident at several healthcare conferences last year, and bodes well for 2012 as a year when further overtures – and partnerships – will be formed with and between patients.

Health2.0

The Health2.0 conference in San Francisco brought a deluge of innovation and shiny, new healthcare applications. Data plus IT and innovation represent the future of healthcare, and individual patients are a critical component of this equation (not just their data). This was a key theme of the Health2.0 conference. “Patient stories” have often been highlighted at conferences, and used as bookends to infuse a dose of reality to educational sessions.  What impressed me about the Health2.0 conference was the inclusion of patients and caregivers in the conversations, allowing for bi-directional exchange. Patients2.0, an offshoot of Health2.0, is a movement that aims to revolutionize healthcare delivery around the patients. The goal is to leverage the Health2.0 phenomenon and develop a hub for patients to exchange experiences through peer-to-peer networks, to obtain information, and most importantly, to have a collective voice in healthcare decision-making. By sharing stories, co-creating health data, and aggregating issues across the healthcare spectrum, the voices of Patients2.0 are empowered to be part of the larger conversation, and to exert influence on the health system by shaping future policy. Patients are the new healthcare disruption that can help transform the landscape, and using forums such as Health2.0 to involve them every step of the way is truly ahead of the curve.

Epatient Connections

The key theme at the Epatient Connections, held in Philadelphia, was that “Healthcare is Social.” Physician, medical and patient communities are forming connections through various social media channels, but there are a still a few less progressive entities a step behind as they figure out how to navigate uncharted regulatory waters. As connections are made, patients are becoming further engaged in their care as they learn from what others are doing. The key is to take those connections one-step further and bridge the various pockets of connection. There needs to be further inter-connectivity between patient voices, scientific publications, medical results and records, and medical education geared towards healthcare professionals, and these need to set the stage for a longitudinal data set. Patient engagement tools that were showcased included everything from health management tools to game-ification that integrated feedback mechanisms and incentives to an Internet enabled robotic telepresence, allowing immobile patients to interact with their healthcare community.

SXSH Unconference

The SXSH Unconference also took place in Philadelphia (Sharing, Exchanging, Social Health). Todd Park, CTO, US Department of Health & Human Services opened up the conference with an introduction to the Data Liberation initiative: New Incentives+ Information Liberation= Rocket Fuel for Innovation. Medicare, Medicaid, and the Veteran’s Administration represent the largest repository of public health data in the world. Patient data liquidity and information about the public health, stripped of personal identification, is being made available so that innovators can use it to create health-maximizing options.

2012

2011 was a year where a foundation for the “patient voice” was established as a critical component of the healthcare system. 2012 will be an even more important year, as healthcare organizations empower more patients by personalizing communications for individual patients. Patients are often overwhelmed with the amount of information they must retain to successfully manage their health. How will healthcare organizations come together to simplify navigation of the healthcare system? How will different healthcare systems, records and applications that serve different purposes connect with one another to prevent redundancy? How will patient stories be further synthesized and culminated into “patient issues” that a roundtable of healthcare sectors can further troubleshoot at future conferences? If 2011 was the year of dipping toes in the waters of “patient engagement” …2012 should be the year of swimming alongside others towards a unified goal—a year of patient engagement through an open network of inter-connectivity.

Sarah Krüg is CEO/executive director of CANCER101, a patient outreach and advocacy organization. She is also president-elect of The Society for Participatory Medicine.

Amidst yellow sandstone arches and California Mission Revival architecture, The Medicine 2.0 +Stanford Summit (otherwise known as the Fourth World Congress on Social Media and Web 2.0 in Health Medicine) set out on a three day journey to challenge its diverse audience to break down silos and expand beyond traditional boundaries. From a focus on research findings and scientific data to dialogue around the future of science, medicine and emerging technology, innovators and thought leaders congregated from around the globe at the state-of the-art Stanford venue, Li Ka Shing Center for Learning & Knowledge. Through the congress, Stanford extended an invitation for open scientific inquiries into the pursuit of teaching, learning, and research, in alignment with its motto. ¹

The energy in the room was contagious starting with the unique conference badges that featured personal QR codes (eliminating the need for business cards), lively twitter feed and building of a #med2 community (over 5,000 tweets!), to the theatrical presentations that conveyed unconventional solutions to healthcare issues. From theory to practice–patients, healthcare professionals, academics and executives discussed and debated concepts such as participatory medicine, patient self management, behavioral change, decision making, the quantified self, communities of practice, social networking, gamification, personalized healthcare, and innovation in medical education. There were so many interesting points made at Med2.0, but I’ve captured a few highlights below:

Abraham Verghese, MD eloquently walked us through the bedside ritual of examining the patient as a critical but threatened skill that is the foundation to the patient-physician relationship. He explained the potential of displacing the patient during the digital age and reliance on technology during the clinical encounter —with more emphasis placed on patient data, rather than the person being treated.

Jennifer Aaker, PhD delivered a brilliant keynote that demonstrated the impact of social media saving lives through storytelling, collaboration, and enabling the wider community to quickly act. The story began with 2 Indian men with AML in search of bone marrow matches and ended with 20,000 South Asians registering as a result of a powerful awareness and social media campaign. Attendees had the opportunity to have their cheeks swabbed and sign up for the Be The Match Registry during the break in the corridors.

The eclectic BJ Fogg, PhD shared his behavior change model which shows that three elements must converge at the same moment for a behavior to occur: B = MAT (Behavior = Motivation x Ability x Trigger).

Susannah Fox gave the closing keynote on the impact of “peer to peer healthcare” where patients are seeking and sharing health advice online. Roadblocks included pockets of offline patients, patients not motivated to engage in their healthcare, silo tools/communities, and lack of awareness of resources. Opportunities included leveraging the power of online caregivers, engagement prompted by life changing diagnoses/events, rise of mobile adoption, and emerging focus of technology that bridges silos and allows data flow. The beacons of change in these efforts include patient, clinician, and technology leaders.

There was a major focus on patient self management platforms in chronic diseases, the Quantified Self and use of digital devices to collect real-time quantifiable patient data, decision support tools to make informed choices, and gaming to change behavior by rewarding patients for meeting health related goals. With all the data being collected, the question is how do you give back the data to patients, synthesize, and set context in a way they can understand?

The use of technology as a catalyst in healthcare improvement was prevalent.  From the use of social media and mobile health tools by physicians to communicate and improve clinical workflow to the use of virtual community platforms by patients to share experiences, understand options and obtain social support–It was clear that patients and healthcare professionals are embracing the impact of technology—although not necessarily at the same pace. Patient online usage to share and obtain healthcare information is on the rise; however a research abstract (764) demonstrating physician attitudes towards social media for their own professional education and knowledge sharing showed that usage and intent to use is fairly low. Plagued with social media privacy concerns and associated risks, traditional modes of learning, and lack of clear guidance and policies—physician usage is growing at a snail’s pace in comparison.

There was a spotlight on the e-patients, of which 23 received scholarships to attend the conference. Each had a compelling story to tell regarding their personal but at times unfavorable experiences with the healthcare system and how they made informed medical decisions by becoming more empowered and engaged in their healthcare. These real life interactions crystallized key themes conveyed throughout the conference.

Larry Chu, MD was the skilled conductor of this colorful performance, which set the bar high for future Med2.0 conferences. We were each given the opportunity to challenge both established and new orthodoxies in healthcare, infuse innovation and creativity into potential solutions, and explore collaborations among the diverse Med2.0 community to make things happen!

Planning for the 2012 Med2.0 Congress is underway to be held September 15-16^th at Harvard Medical School. Stanford will also debut MedicineX in 2012 focused on the intersection of emerging technology and the future of medicine.

¹ Die Luft der Freiheit Weht-unofficial Stanford Motto, Ulrich von hutten, 16^th century

Sarah Krüg is executive director at Cancer101, a patient organization. She was previously Global Education Director in the Medical Education Group at Pfizer

Asked whether DTC ads on television should be retired, Read answered unequivocally – “No” – and noted the difficulty of educating patients when “so many warnings are required that [a drug ad] scares more people than it helps.”

Robert Bazell, NBC’s chief science and health correspondent – and Read’s interlocutor during a lunch session at the Cleveland Clinic’s annual Medical Innovation Summit – picked up on Read’s comments about excessive warnings on televised drug ads, noting Pfizer’s 2007 Celebrex ad that lasted over two minutes, almost all of which was spent on the recitation of warnings (Celebrex, along with its fellow NSAIDs, picked up a black box warning in 2005).

Responding to the question of why Pfizer decided to go ahead with Celebrex DTC ads, post black box warning, Read said “the trials that gave rise to [black box] labeling in Celebrex, the data, if one patient had gone the other way, there would have been a different statistical result.”

Asked by Bazell about the issue of trust: “What is your perception of the public’s perception of Pfizer and the rest of the industry?” Read said Big Pharma’s reputation could use some improvement. “We’re above Congress and tobacco, and slightly below physicians and hospitals…there is blame on [industry’s] part for that.” Read said increasing transparency in clinical trials and other areas could ameliorate industry’s reputation. “We don’t sell a pill, we sell data. If you believe the data, there must be transparency,” he said.

Read emphasized the importance of incremental innovation to society, the need to protect industry’s intellectual property, and called for an explicit risk/benefit profile for drug development. He called the U.S. tax rate “uncompetitive,” citing tax rates in Europe “as low as 15%.” Industry “can’t work with one hand tied behind our back,” said Read. “Elites have lost faith in innovation as a social benefit…it’s a cost only conversation.”

“Perception of value drives the willingness to pay, and those perceptions vary from country to country,” said Adam Woodrow, vice president of Pfizer’s specialty care business unit, at a marketing and strategy forum hosted by Simon-Kucher & Partners. “We need to do a much better job communicating value to payers, and that means knowing what turns the payer on,” said Woodrow.

In a global environment where “a simple slip up in one country” can mean losing “half a billion dollars overnight,” – due to the widespread adoption of cross-country reference pricing in Europe, Asia and elsewhere – drug companies need to send a consistent message to stakeholders, said Woodrow. Payers often speak with physicians, for example, when evaluating a product for reimbursement; if sales reps are out saying one thing to doctors, and payers are hearing something else, that disconnect could translate into a less than ideal reimbursement decision.

Patient groups and associations represent another way to boost the perception of value on a given drug, said Woodrow. “Patient groups can be incredibly powerful” in gaining reimbursement, he said, citing the World Federation of Hemophilia as one particularly strong organization. “Hemophilia drugs are reimbursed almost across the board,” due in no small part to governments being pressured by patients, said Woodrow. “We have to be very careful about how we interact with patient groups.”

Woodrow, who jokingly referred to the UK’s National Institute for Health and Clinical Excellence (NICE) as NICER – “No, I Can’t Expect Reimbursement” – said Big Pharma has “failed to communicate value properly, but let’s be real: half the drugs are me-too, so there is no value. We have to begin [the clinical process] with a truly different value proposition” that recognizes the payer’s needs and perception of value, and brings patient advocacy groups on board.

The New York City Life Sciences Marketing & Strategy Forum was held yesterday in Manhattan.

New disease-specific television networks shown in physicians’ offices provide education for patients and advertising at the point of contact for pharma companies.

What if pharma companies had one last chance to reach patients, just before they walked into the exam room to speak to their physicians? What if the very last word a patient heard before speaking to their doctor was “Lipitor,” “Advair,” or “Nexium”? What if Big Pharma could literally place a rep in the waiting room to whisper advice to patients as they crossed the threshold from waiting room to exam room? While this may not be entirely practical or possible, there’s at least one way such a dream can almost come true.

AccentHealth, America’s largest health education television network, has announced nine new condition-specific networks that reach and educate more than 13 million patients in doctors’ waiting rooms every month. TV networks such as this present a last-minute opportunity for education (and advertising) just before Big Pharma’s two biggest targets—the doc and the patient—put their heads together to decide while medication will be the right fit, whatever the ailment. The nine recently announced networks focus on diabetes health, heart health, men’s health, senior women’s health, rheumatology, allergies, asthma, and gastroesophageal reflux disease (GERD).

The difference this makes, says Dan Stone, CEO of AccentHealth, is measurable. “Pharma brand managers are very focused on ROI. I’ve been in the media business for my whole career, and this is the only segment of the business on the healthcare side, particularly in pharma, that has true ROI measurement,” he says. Why? Because oftentimes, it’s very difficult to link forms of advertising such as DTC mailing or branded websites, with actual numbers of prescriptions filled.

In contrast, it’s easy to measure AccentHealth results directly—65 percent of patients who are in AccentHealth offices leave with a prescription in hand, says Stone.

So while the incentive for pharma companies to advertise on AccentHealth networks seems pretty clear, what’s the incentive for the physician’s office to carry such programming?

All AccentHealth programming is educational, from treatment advice for specific health conditions to cooking programs about how to make healthy meals for your family. And nothing (except for the commercials) is branded or sponsored by any drug company or other stakeholder. “We don’t do that for a couple reasons,” explains Stone. “One is fundamental credibility, to ensure that we are being viewed as an independent voice. Secondly, a lot of the pharma clients themselves are restricted from doing that. So for example, if we run a segment on diabetes treatment, we will not advocate a particular drug, and then we will not run a diabetes drug ad in the commercial spot directly following the programming.”

The AccentHealth equipment and programming is offered to physician offices for free, in exchange for the guarantee that it be the only programming shown, and that the sound always be on to accompany the programming.

In this way, pharma gets the most out of the advertising spots, and patients get the most out of the educational programming, without blurring the line between the two.

Communicating at point of contact with the physician is a key emerging field and the entry of numerous new players will likely increase options for drug makers who feel comfortable with this new tool.  Developing independent and standardized metrics for measuring the impact of how this technology builds access will also help toward winning support in the marketplace.

According to Contextweb, an advertising technology firm, marketers are remiss in assuming that consumers are only interested in clicking on a pharma banner when it’s on a medical or health site. By understanding what kinds of non-health sites – and categories of sites – that individuals visit (individuals that click on a pharma ad, that is), marketers can take advantage of cheap inventory served up in other content categories, like travel or sports, says Tanayia Washington, author of the report.

“We’re not advocating that [marketers] step away from health content, as a pharmaceutical advertiser. We’re advocating that you go beyond it…you can expand your buy,” says Washington. “The assumption is that if individuals are consuming a lot of this [non-health] content, they’re really interested in that content. If we can find them where their interest is, it’s a perfect fit for the advertiser.”

The report found that WebMD and Everyday Health reached 16.9% and 17.8%, respectively, of online consumers searching for information on a treatment for an ailment or condition, while the comparable reach figure for the long tail was 69.9%. Similar figures were seen with users who “bought a prescription for an ailment or condition.”

Washington said that placing pharma ads on a non-health site provided brand lift, although health sites offered the most brand lift.

Scaling up on the long tail is easily done, once a target group’s web behavior can be extrapolated, but safety is a big concern; advertisers don’t want their ads mixed up with inappropriate content. “As a pharma advertiser, you’re very concerned about safe environments, so you need to make sure that partners can provide that environment, and scale it, at the page level,” said Washington.

To put health IT in the hands of patients, to foster more open communication between patients and physicians, to promote better health and wellness (and lower costs) for the public overall — these are the (somewhat daunting) objectives of the National eHealth Collaborative (NeHC) Consortium.

Headed by CEO Kate Berry and led by a steering committee that includes experts from the Office of the National Coordinator for Health IT (ONC), the Consumers Union, the National Patient Advocate Foundation, the American Association of People with Disabilities, and others, the Consortium last week tasked itself with inventorying current available resources, devising outreach strategies, and reducing disparities.

The first goal is to pool resources and share expertise and best practices, explains Berry. “Given that these many different identities may already be doing something around [health information] education and engagement … we’re hoping to serve as a forum for sharing … to come up with a comprehensive inventory of what everyone is doing and identify where the gaps are.”

Second, the consortium is offering a chance for all stakeholders to ask and answer questions: What are the most important messages patients need to know? Why should I care about health IT? What can this mean to me? The idea is to reach an agreement among stakeholders on what the key messages concerning health IT are, who the most trusted messengers are, and the best strategies for disseminating that information.

For the purposes of the Consumer Consortium, “Health IT” and “eHealth” are defined very broadly: any information that the general public can access regarding health, wellness, disease conditions, treatment options, and other information via websites, mobile applications, online databases and resources, and other tech tools.

By “enabling coordination and organization” NeHC “can have a greater impact than any one member or organization could on their own,” Berry says. “It serves as a neutral convener of all the interested stakeholders on this topic, so we’ve got pretty much everyone at the table.” Attendees included patient advocacy organizations, pharmaceutical companies, and even individuals not associated with any particular organization, but who are passionate about the widespread use of health IT.

Berry adds: “We’re really trying to take advantage of the energy and momentum around this work and have some concrete deliverables… The ONC recently released a strategic plan for the coming five years, and consumer engagement is one of the top five strategic priorities in ONC’s plan.” She expects the second meeting (this July), to serve as a reconvening of the consortium’s smaller work groups to present one another and additional attendees with their recommendations for specific plans of action around these issues. In the meantime, she says, all workforces and steering committee members will be in close contact with one another.

Looking into the future, Berry has several ideas of how health IT can educate and empower the public, and what that could eventually mean for the healthcare industry as a whole. She suggests online resources that allow patients to make doctor appointments or order prescription refills from pharmacies online, databases that allow patients to keep track of their own health records, and apps that track blood sugar or other vital statistics in the same way a pedometer tracks your daily steps. “There are all sorts of ways that technology can be leveraged to help a patient better manage [their health] to avoid hospitalization or emergency visits,” she says. “So we may spend a little bit more on medications but we’ll spend a lot less on other downstream costs.”

Overall, Berry feels that the first meeting was a strong debut to what she says could become a multi-year project. “We had a number of participants who spoke with great passion from the perspective of patients, drawing on their own experiences of having been very ill and navigating that process,” she says. “That voice was strongly present. We got the dialogue going. We had enthusiasm and excitement about the consortium across the board and a resounding yes—that these issues are important, that they are timely, and that this is a worthwhile endeavor.”