4 Old media to new in health: from information to interactivity
Abstract: This chapter examines the ways in which new media are altering how individuals engage with the healthcare system and their own health. It examines how traditional print and electronic information (radio/TV) have typically functioned as personal health references; how that has changed; how apps and websites in a Web 2.0 world have assumed some of those functions and other unique capabilities related to availability, scope and personalization of information; and how old and new media interact. It examines provider control of messaging versus online patient communities and specific motivators for behavior change that are independent of medium. It places the evolution of media types within the context of a doctor-patient relationship moving from authoritative to facilitative and, eventually, collaborative. While old media can encourage and inform activation, new media provide tools that enable it, particularly as “triggers” towards behavioral change become more widespread. For providers, the challenge is to deal with a cultural revolution in the relationship with patients at the same time as a technological revolution in communication media. For patients, new media brands have yet to emerge that connote trust and reliability, although some apps carry federal regulatory approval. We believe the interactivity of Web 2.0 will enable a new level of healthcare consumerism, provider-patient collaboration and peer-to-peer learning that will be good for the healthcare system and even better for the health of every individual.
4.1 Introduction
The Smokey Bear smartphone app, which helps users safely build and extinguish a campfire, has one flaw – it requires a connection. This, noted one reviewer, “is a little crazy if […] it’s for when you’re camping”. Even with a connection, the instructions are text-heavy and difficult to use on a small screen.[1]
The suboptimal Smokey app conveys a message that concerns health care as well as campfires. The effectiveness of any particular medium depends upon the content, design and circumstances under which it is used. Marshall McLuhan notwithstanding, the medium alone is not the message. Effective messaging involves an interaction between medium, situation and user. As one researcher put it: “[B]oth media and methods influence learning, and they frequently do it by influencing each other”.[2] This dynamic is increasingly relevant for health care.
This chapter discusses how the changing nature of media is altering the way in which individuals engage with the healthcare system and with their own health. We include in our definition the ways in which individuals choose to engage in health on their own, as well as what happens when engagement involves outreach from the healthcare system.
Traditionally, healthcare professionals have treated patient engagement as an extension of beneficence. It’s something providers do (when they do it) for patients: we engage you with brochures, videos and other communication tools. Patient engagement using health information technology (HIT) via new media capabilities can function as an extension of the same mode of behavior. The presentation may offer some interactivity, but it is still conveyed by the expert to the recipient to produce compliance. This is part of the Web 1.0 paradigm, where users are consumers of content, not creators.[3]
That traditional perspective can be appropriate. A learned profession, after all, is defined by its unique knowledge, and physicians are among the most trusted sources of information in health care.[4] At the same time, individuals live most of their lives outside the healthcare system. Only 10% of a person’s health is attributable to health-care system inputs, versus the 50% of health bolstered through personal behaviors at home, at work and in everyday life outside of the physician’s exam room.[5]
People engage with their health and the healthcare system on their own terms. Nearly 70% of consumers reported that they look up symptoms online rather than going to the doctor first, and 64% try to learn about their condition instead of relying solely on the doctor.[6] New media, in combination with other social forces, fundamentally change how this engagement is carried out. Online information is abundant, cheap, personally oriented and designed for participation.[7] As a result, the care relationship is inexorably moving from authoritative to facilitative, bringing an increase in shared decision-making, patient self-care and proactive patients.[8]
Croteau and Hoynes remind us how pervasive media are:
The media surround us. Our everyday lives are saturated by the Internet, television, radio, movies, recorded music, newspapers, books, magazines and more. In the 21st century, thanks in part to the proliferation of mobile devices, we navigate through a vast media environment unprecedented in human history.[9]
The ways in which old and new media interact will be crucial to the course of patient empowerment in the future. Both will enable a new model of collaboration that challenges current provider work habits and business models.
4.2 The current situation: needs, gaps and challenges
“Media” is the plural of “medium”, from the Latin medius, or “middle”. Communication media, Croteau and Hoynes explain, “are the different technological processes that facilitate communication between (and are in the middle of) the sender of a message and the receiver of that message”. The difference between a “reader” (of print or “reading” the sound and pictures of electronic media) and a “user” of media is that users contribute content, be it a review, tweet, photo or tag.[10] A TV ad for an online travel site is an example of old media; using the site to compare travel options and then book a trip is new media. For the purposes of this chapter, “new media” refers to those interactive capabilities. That difference between old and new media is beginning to have an impact.
4.2.1 New media are fundamentally changing health engagement
Beginning in the post-war years, the provider-patient relationship has been profoundly altered by patient engagement with health information. The rebellious grandmothers of today’s Millennials rejected pediatricians who told them to feed their babies on a doctor-set timetable and embraced instead the radical notions of The Common Sense Book of Baby and Child Care. Author Dr. Benjamin Spock told mothers they could trust their instincts and feed their child “when he seems hungry, irrespective of the hour”. A quarter-century later, the moms of today’s Millennials banded together to write a booklet, Women and Their Bodies, to show that “women can become their own health experts”. It sold 200,000 copies by word-of-mouth, then morphed into the international bestseller Our Bodies, Ourselves.[11]
Books, magazine articles, television and the social activist descendants of the Civil Rights movement have combined over time to help shatter the paradigm of instinctive deference to expert opinion. HIT in its turn is enabling the full realization of new roles in previously unimagined ways unique to the capabilities of new media. Interactions will be different. Some health data will originate with the individual’s doctor, but some will have no connection to the doctor, yet still be reliable and personalized. That data may be generated through wearable devices like digital health trackers or smartphones that bundle heart-monitoring capabilities. (This type of information that starts with the patient, not a clinician, is sometimes called patient-generated data, user-generated data or consumer-generated data.) Sometimes, this type of data can also come from sophisticated websites where patients crowdsource personal health data.
Already, a patient using online sources can develop an informed opinion about a diagnosis, treatment alternatives and those who provide them. This evolving information ecosystem will enable, and may eventually require, patients to take more responsibility for their health. It will certainly inform better choices about using and paying for healthcare services. Still, there will be pitfalls. Some consumers will inevitably overestimate the extent to which the “e” in “e-patient” stands for “expertise”. Doctors, after all, are the ones who say, “A physician who treats himself has a fool for a patient”. That will sometimes apply to self-care, if not quite as much as doctors might believe.
In addition, new media create opportunities for patient-powered research networks, enabling people with shared conditions to come together for “curing together”. [12] At the same time, new media bring new challenges related to control of data, consent for data to be used for research or other purposes – particularly patient-generated data – and privacy protection. Data reliability will inevitably be an issue, as well. There are issues related both to data provenance (“Is the data source what it’s purported to be?”) and accuracy (“Are patient-generated data coming from similarly calibrated devices or similar understanding of medical terms?”).
At the same time, behavioral change ultimately depends not just on information, but upon the individual being sufficiently motivated to act, having the ability to perform the behavior and being triggered to perform the behavior, according to B.J. Fogg, director of Stanford University’s Persuasive Technology Lab. All three factors must be present.[13] Some aspects of the ability to change can be affected by, say, simplicity of web design. Other barriers, particularly for vulnerable populations, may require additional interventions, even though social media in general appear to be disseminating throughout the U.S. population independent of education, race or ethnicity. [14] Certainly, old and new media alike have a part to play in prompting behavioral change, sometimes separately and sometimes complementarily.
4.2.2 Patient engagement and activation – enabled, but not inevitable
In contrast to Web 1.0, Web 2.0 creates a dynamic interactivity between user and content[15] that will reinforce the facilitative relationship discussed above. In time, that could lead to an enhanced physician-patient partnership characterized by collaboration. Even now, fully nine in ten U.S. adults say they want at least joint decision-making about their medical treatment, and one in four want to be “completely in charge” of their decisions.[16], [17] Engagement will become an essential characteristic in a collaboration that accommodates patients who wish their doctor to serve mostly as a guide, patients who prefer more traditional ways and those who may vacillate depending upon clinical and personal circumstances.[18]
If information is power, digitized information is distributed power. It will be wielded by traditional healthcare sources (providers), less traditional ones (insurers and employers), outsiders (entrepreneurs and non-healthcare companies such as IBM or Google) and by patients themselves (via sites such as CureTogether or Smart-Patients). But just as the medium is not really the message, neither the message nor its medium is inevitably linked to action. Financial incentives, for example, can certainly play a part in motivating health behavior change.
4.2.3 Patients take on greater financial and clinical roles
Incentives and behavioral economics have begun to affect financial and clinical behaviors by patients. So-called consumer-directed health care in the form of high-deductible plans and health savings accounts (HSAs) are growing quickly as part of a financial “risk-shift” to employees. In 2014, 79% of employers planned to offer some form of “account-based” health plan.[19] Not surprisingly, employees in these plans were more likely to make cost-conscious decisions.[20]
As consumers take on more healthcare financial management responsibilities in the form of HSAs and high-deductible plans, they will evince “shopping” behaviors. Those behaviors, in turn, will be supported by the growing availability of online marketplaces and sites sharing patient satisfaction rankings. Still, challenges remain. A 2014 report on state efforts to collect and publish healthcare price information produced a failing grade for 45 states, with not one getting an “A”. Critics say available tools do not yet provide needed clinical detail.[21]
Meanwhile, financial risk is helping prompt some consumers to pay more attention to self-care encouraged by providers who are themselves at greater financial risk for the costs of care in a “value-based payment” world. Tools for self-care and provider-patient collaboration include offerings for managing chronic obstructive pulmonary disease, diabetes and sleep disorders, online patient communities and expanding telehealth options for care transitions. Although patient and provider interests may align, issues of control remain.
4.2.4 Healthcare organizations want to control the message
New media still make many in the healthcare community nervous. Most corporations long ago learned you can’t control what visitors to your site see elsewhere. As a result, you can find negative as well as positive reviews on the websites of retailers and manufacturers. “Better they hear it here and stay here”, seems to be the philosophy. By contrast, University of Utah Health care garnered national publicity in 2014 by becoming the first health system to post patients’ positive and negative ratings of individual physicians on the hospital’s own website. Although comments were overwhelmingly positive, all are posted.[22]
This example of transparency remains rare. In 2007, an affiliate of Blue Cross and Blue Shield of Minnesota launched The Health Care Scoop, promising, “Patient reviews from people like you”. Its candid postings about providers and insurers included negative reactions to Blue Cross.[23] Few, if any, organizations followed that lead, and the site has since been taken down. Allowing negative tweets to remain on a corporate Twitter account, albeit with replies, is the most typical departure from a command-and-control outlook. Engagement seems to mean deploying new media for its persuasive powers. Persuasion is certainly a form of engagement, but it isn’t collaboration.
4.2.5 Whom do people trust? Who should they trust?
Individuals’ notions of authority and trust are changing. Respondents to the Edelman Health Engagement Barometer survey indicated that health companies’ websites, magazine articles and TV news, as well as medical brand websites, will become less important sources of information.[24] Meanwhile, other surveys have found that hospitals, pharmacists, nurses and doctors enjoy high levels of trust.[25], [26] Trusted intermediaries include Consumer Reports, publisher of Best Buy Drugs and physician ratings, AARP and medical societies. Pharmaceutical and device companies that wish to engage patients in their care must use authentic clinical evidence and reliable expert sources, since trust is a precursor to engagement.[5] To patients, healthcare has already entered the shared decision-making era. It is less clear whether providers see it the same way or are ready to share “content creation” in a new media world.
4.2.6 Individuals are earlier adopters of new media than the health industry
Individuals as consumers have long been living in a Web 2.0 world when it comes to managing finances (e.g. paying bills and trading stocks), booking travel and consuming media (e.g. newspapers, music, television and movies). Now, individuals in their role as patients and healthcare consumers have begun to participate in a Health 2.0 world as well. Examples include crowdsourcing of therapies on social networks,[27] sharing opinions about medication side effects[28] and creating clinical content through blogs, video logs (“vlogs”) and pictorial sites such as Pinterest and Insta-gram.
This widespread digitization is pushing the healthcare industry to boldly go where everyone else has gone before. As these non-pioneers arrive, they are adopting techniques, strategies and learning from elsewhere.
4.3 Proposed solutions
4.3.1 Embrace and personalize transparency
Perhaps the best example of old media blending with new is the combination of investigative journalism and tools provided by ProPublica, a Pulitzer Prize-winning non-profit supported by grant funding. ProPublica only exists online, but its stories are produced to be used, and often localized, by newspapers and broadcast outlets such as National Public Radio. Individuals can go online to their local outlet, or to ProPublica’s site, to employ an array of tools enabling them to act on the information they’ve just read or heard. Topics have included patient safety, drug and device company payments to doctors and doctor prescribing habits.[29] The key is being able to look at one’s personal physician or local hospital.
Old and new media have a role to play in bringing transparency and accountability to areas of medicine traditionally cloaked in mystery, such as price, quality and outcomes. One example is using old media credibility to motivate change. Consider the April 2013 “old media” Time magazine cover story, “Bitter Pill: Why Medical Bills are Killing Us”.[30] The article by Steven Brill, of unprecedented length and depth for the iconic magazine, ignited a public furor by opening up the secretive, idiosyncratic and often unfair hospital chargemaster and medical billing processes. That scrutiny prompted public and political pressure for transparency.
It is new media, however, which can turn outrage into actionable information. Sites for patients to share information on costs, quality, and service include Clear-HealthCosts, OKCopay and PokitDok. Online marketplaces such as ZocDoc provide one-stop shopping to locate providers, book appointments and pre-pay for services online.[31]
Those who pay the brunt of rising healthcare costs – employers, government and individuals – are bringing unprecedented pressure on those generating those costs. A recent national insurer survey estimated that one of every five dollars paid to providers now falls under a “value-based purchasing” bundled payment arrangement that rewards improving care and lowering costs.[32] A dollar sign is being attached to “the right care for the right person at the right time”. As a 2013 Institute of Medicine roundtable concluded: “Prepared, engaged patients are a fundamental precursor to high-quality care, lower costs and better health”.[33]
4.3.2 Patient communities will support self-care and safer care transitions
The leisurely back-and-forth of letters-to-the-editor in old media has evolved to blog comments and to sophisticated online patient communities (OPCs).[34] OPCs can offer emotional support, links to useful resources, tools for caregivers and an interactive environment for patients, caregivers and providers alike. Almost one in four people (23%) among those living with chronic conditions has gone online to find others dealing with chronic and acute medical conditions,[35] and one in five has joined a health forum or community.[36]
With over 140,000 members, PatientsLikeMe [37] is arguably the largest and most prominent OPC. Its registered members share information such as health status and progression of disease in response to various therapies. Patients hope to learn what works for others with the same condition in order to empower self-care as well as, perhaps, gain insights to share with their doctors. Ironically, community members in PatientsLikeMe were part of a study published in a journal behind a “paywall”, meaning the average individual had to pay to see it. One patient reacted to this scenario in a blog post titled, “Can Patients Collaborate Without Open Access?”.[38] Though the ability of OPCs to engage patients may be growing, they exist within a medical and scientific landscape that has not yet embraced open access to information for all.
4.3.3 Entertain to engage, where appropriate and authentic
Despite what those in the field may sometimes think, health and healthcare topics do not automatically captivate a potential audience. Successful engagement must be truly engaging. Under the right circumstances, entertainment and information can mix. Talk show hosts like Oprah or her protégé, Dr. Mehmet Oz, have wielded enormous influence through television, radio and print, and added to their influence through newer media. The medium, the message, its actionability and their personal charisma have given them credibility that has been undented by traditional media reports alleging that the medical information they provide is often unreliable and even possibly harmful. It is unclear whether “reporting” by the odd hybrid of comedy-news shows represented by Last Week Tonight With John Oliver will have a greater impact. Dr. Oz’s questioning by Congress in mid-2014 about questionable weight-loss advice was covered in greater depth by Last Week Tonight than by traditional news media.[39], [40] It was also a lot more entertaining.
The “engage with entertainment” approach is so potentially powerful that it is being embraced by traditional organizations. Website and mobile apps use fun as a starting point for behavior change, offering personalization and interactivity that no TV or radio celebrity can match. Gamification can be particularly useful in dealing with diseases in children; e.g. autism[41] or other long-term chronic ills.[42] For example, “Diabesties” pairs college students for support in tracking diabetes with a peer. GeckoCap uses glowing caps on asthma medication as a signal for kids to take a dose; parents set up rewards for compliance. The game Nanobot’s Revenge for kids with cancer uses ChemoBlast 6MP instead of fireballs.
4.3.4 New media can help healthcare move quicker
As noted previously, effective messaging with old or new media involves an interaction between medium, situation and user. Thomas Paine helped inspire the American Revolution with a pamphlet. The effect of Facebook postings and tweets on the Egyptian revolution against Hosni Mubarak in Tahrir Square was remarkably similar in why it had impact, while being completely different in the speed of its effect.[43] So, too, in healthcare: old and new media can make an impact, but new media can speed up engagement. Examples include recruiting for clinical trials, interacting with patients in communities, or bolstering compliance to medication through “social adherence”.[44]
4.3.5 New media in healthcare support patient activation
The Patient Activation Measure (PAM) assesses self-efficacy and health confidence and assigns a score along a four-point scale.[45] What distinguishes newer HIT tools is that they offer patients an immediate way to translate feelings into action. As noted by Fogg, for information to change behavior, an individual must be sufficiently motivated, have the ability to perform the behavior and be triggered to perform it.[46] New media can place individuals in front of motivational “hot triggers” in the form of cues, prompts and other spurs to healthy actions.
For example, the Food and Drug Administration-approved digital platform Propeller Health (formerly Asthmapolis) uses real-time health coaching to help individuals manage respiratory conditions. The device marries a sensor to a mobile app that together monitor a user’s condition if it worsens (exacerbation) and compares metered-dose inhaler use to a personal baseline and general guidelines. The user receives alerts via a smartphone app to bolster medication adherence, along with other education and reminders.
This type of evidence-based app increasingly has the active backing of clinicians. Similarly, a growing number of clinicians now recommend reliable websites, a practice sometimes referred to as information therapy.[47]
4.4 Discussion
Changing inbred behaviors is difficult. Doing so during a technological and a social revolution in the doctor-patient relationship is more difficult still.
In 1993, at the dawn of widespread use of the Web, an American Medical Association policy committee declared, “Physician and patient are bound in a partnership that requires both individuals to take an active role in the healing process”.[48] What has changed since then is the ability of one partner, the patient, to access sophisticated, personalized and actionable information outside the control or knowledge of the other partner, the physician. Sometimes that information may even be directed to physicians but available to patients, such as an online calculator of morbidity and mortality risk from the College of American Surgeons or the health app, Epocrates.
What has also changed is the patient’s ability to partner with someone other than the doctor, when appropriate, to improve health or obtain better healthcare. OPCs and peer-to-peer healthcare offer tools and advice that an individual clinician often cannot, or will not, match.
The evidence about the impact of new media on outcomes is encouraging, whether in general terms or in rigorous examination of the evidence for certain conditions, such as diet and exercise behavior.[49] However, it is still early, and the plethora of interventions (social networking sites, blogs/microblogs, “virtual worlds”, etc.) has made it difficult to definitively compare different tools.[50]
Moreover, the growth of new media by no means signifies that the old doctor-patient relationship is defunct. What it does mean, however, is that the relationship needs to evolve as we have suggested, going from authoritative to facilitative and, eventually, to collaborative.[51] The transition could be turbulent, especially as patients adopt new media for clinical use far faster than physicians. Patient control of data may also disrupt long-established medical routines; for example, the “blinding” of clinical trials has become more difficult in an era when patients enrolled in a test of a drug may communicate with others about side effects and symptom amelioration via OSLs. New forms of trials that explicitly take this effect into account will surely begin to arise in response.
In this same context, one threat to new media is doubt about the reliability and provenance of information, as mentioned earlier. The New Yorker cartoon captioned, “On the Internet, no one knows you’re a dog” became a meme for good reason. There are solutions beyond the scope of this chapter; for our purposes, it’s important to emphasize the role trusted “old media” can play. An ABC News-sponsored tweetchat on blood pressure control, for example, comes with credibility a random dot-com can’t match. Tools from ProPublica inspire trust in a way a site festooned with ads may not. Other tools will win credibility because of FDA or other regulatory approval or the transparency of the evidence supporting them.
Trusted new media brands will arise, and they need not be non-profits. Brands like FedEx and Coca-Cola top “most admired” lists because of the emotional bond they’ve built with consumers and because of perceived reliability. Time will tell whether a PatientsLikeMe will become as trusted for a new generation as Our Bodies, Ourselves or a Merck Manual for previous generations. Or whether patients themselves may start earning an economic return for sharing their medical information. It’s easy enough to see the old media struggling; the shape of the new, or of a hybrid, has yet to clearly emerge.
Importantly for new entrants to an entrenched industry, many have substantial financial backing. Some come with Old Media legacies, such as CareInSync, acquired by Hearst. The new entrants are challenging deeply embedded cultural, managerial and fiscal habits, and the change will be wrenching for many. Disruptive innovation disrupts, and those on the disrupted end are rarely disposed to passively accept their fate.
Nonetheless, disruption is inevitable. “Participative technologies”, as one group of experts put it, will “accelerate demands for information, interactivity, and access to meet public expectations for accountability and consumer expectations for transparency and decision support”.[52]
4.5 Conclusion
Old media storytelling can motivate and, on the web, provide modest actionability. For instance, New York Times reviews of activity trackers that produce patient-generated data include links to the manufacturer’s site.[53] Old media and new may be appropriate individually or in concert at different times. We learn by seeing, hearing and doing, by repetition and rote, by intellectual and emotional responses. The digitization of information opens up extraordinary communication capabilities. In health-care, we stand at the start of the learning curve on how to best use them.
The medium and the content must also be seen in a social context. The actions we take based on what we see, hear and feel – the “triggers” discussed in this chapter –are shaped by who we are as well. Age, ethnicity, race, gender and even political leanings can all play a part. So does income and education level. What seems humorous or motivational in a “gamification” app to one person may seem offensive to another or simply fail to connect at all. Healthcare is going to have to learn careful research habits from the consumer products field.
As new media become mainstream, “navigators” or information concierges will become more prominent; they’ll be the Information Age equivalent of the kindly librarian of old. We live in an emerging ecosystem; the web woven by web-based interactivity has yet to reach its full dimensions. There is little evidence that the old HIT, controlled by providers, has improved patient satisfaction.[54] But as distinctions between the HIT of the hospital and doctor’s office and that of the “rest of world” lessen, just as old/new media distinctions are beginning to, that may change. The path to collaboration may not be smooth, but the destination may yet make both partners in the provider-patient relationship much happier. In any event, given the convergence of patient-centered healthcare, social media and the Internet, a major shift in how patients and healthcare organizations connect is inevitable.[55]
The activist patient rallying cry “Nothing about me without me” can be traced back to at least the 1990s. We believe the interactivity of Web 2.0 will enable a new level of healthcare consumerism, provider-patient collaboration and peer-to-peer learning that will be good for the healthcare system and even better for the health of every individual.
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