The e-Patients.net site has an excellent review of a white paper on how use by patients of online and health information-based tools is transforming health care and the physician/patient relationship. You can download the white paper (“e-patients: how they can help us heal healthcare”) at e-Patients.net and also in the Intelligent Medicine Blog information box.
Here is a summary of the major conclusions, as summarized by e-patients.net:
1. e-patients have become valuable contributors, and providers should recognize them as such. “When clinicians acknowledge and support their patients’ role in self-management … they exhibit fewer symptoms, demonstrate better outcomes, and require less professional care.”
2. The art of empowering patients is trickier than we thought. “We now know that empowering patients requires a change in their level of engagement, and in the absence of such changes, clinician-provided [information] has few, if any, positive effects.”
3. We have underestimated patients’ ability to provide useful online resources. Fabulous story of the “best of the best” web sites for mental health, as determined by a doctor in that field, without knowing who runs them. Of the sixteen sites, it turned out that 10 were produced by patients, 5 by professionals, and 1 by a bunch of artists and researchers at Xerox PARC!
4. We have overestimated the hazards of imperfect online health information. This one’s an eye-opener: in four years of looking for “death by googling,” even with a fifty-euro bounty for each reported death(!), researchers found only one possible case.
“[But] the Institute of Medicine estimates the number of hospital deaths due to medical errors at 44,000 to 98,000 annually” … [and other researchers suggest more than twice as many]
We can only conclude, tentatively, that adopting the traditional passive patient role … may be considerably more dangerous than attempting to learn about one’s medical condition on the Internet.” (emphasis added)
5. Whenever possible, healthcare should take place on the patient’s turf. (Don’t create a new platform they have to visit – take yourself wherever they’re already meeting online.)
6. Clinicians can no longer go it alone.
Another eye-popper: “Over the past century, medical information has increased exponentially … but the capacity of the human brain has not. As Donald Lindberge, director of the National Library of Medicine, explains ‘If I read and memorized two medical journal articles every night, by the end of a year I’d be 400 years behind.”
In contrast, when you or I have a desperate medical condition, we have all the time in the world to go deep and do every bit of research we can get our hands on. Think about that. What you expect of your doctor may shift – same for your interest in “participatory medicine.”
7. The most effective way to improve healthcare is to make it more collaborative. “We cannot simply replace the old physician-centered model with a new patient-centered model… We must develop a new collaborative model that draws on the strengths of both systems. In the chapters that follow, we offer more suggestions on how we might accomplish this.”
We have seen this before. Pfizer’s bid to buy Wyeth for more than $68 billion is another example of a giant pharmaceutical company seeking to get bigger as a solution to looming generic competition and an unproductive R&D pipeline. The strategy has not been successful for Pfizer in the past. The company has undertaken a number of mega-mergers over the last 10 years, including Warner-Lambert for $120 billion in 2000 and Pharmacia for $58 billion in 2003.
Bigger Giant, Same Clothes
These deals bought Pfizer the blockbuster drugs Lipitor, Celebrex and Bextra, but the impact on innovation has been striking. During this same period, Pfizer invested $60 billion in R&D, but launched only one new product with revenues exceeding $1 billion.
While most major pharmaceutical companies are struggling with these issues, some are exploring a very different path to innovation in response. Johnson & Johnson, for example, recently created the Office of Strategy and Growth to develop major businesses that enter new markets and leverage the drug, device and consumer product diversity and strengths of the company. The direction of this strategy has become clear over the last few months, and it shows J&J moving quickly and aggressively into information-based, patient-centric medicine and wellness management. In October of 2008, J&J launched a Wellness and Prevention Platform with the acquisition of HealthMedia, a leading behavioral medicine company that offers web-based, automated coaching for wellness, disease management and health interventions. (Note the impact technologies like this can have on patient outcomes in our Connecting with Connected Health post). This was followed in December with the acquistion of the Human Performance Institute, a science-based health, productivity and performance training company. J&J spoke of both acquisitions as being central to its growing focus on the health and wellness management needs of large employers, health plans and governments. The company clearly sees a multi-billion dollar opportunity in providing solutions for these entities that are on the front lines of dealing with ever-increasing health care costs.
J&J is also positioned to link the new wellness and prevention platform to its portfolio of medical devices and pharmaceutical products, creating treatment systems that could redefine standards of care and outcomes…and have the potential for billions more in new and differentiated products. Think about its LifeScan blood glucose meters linked to HealthMedia virtual diabetes education coaches on a diabetic consumer’s mobile phone, for example. Or patients implanted with its Cypher heart stent receiving drug adherence monitoring and automated coaching for their anti-clotting therapy and recommended diet and exercise regimen, leading to an integrated system of device, drug and behavioral medicine. This approach, focusing on new paths to innovation and growth and not just more of the same, can make even giants dance.
“The dogmas of the quiet past are inadequate to the stormy present.” President Lincoln
“What the cynics fail to understand is that the ground has shifted beneath them.” President Obama
On this, an historic inauguration week in the United States, where dogma and cynicism have been quieted for a brief and welcome moment, consider health care. Is the present very different from the recent past? Has the ground shifted? Will new solutions fill the vacuum of a broken system? Or is a new approach like intelligent medicine simply an innovator’s dream, with the barriers and limitations of physicians, payers, regulators and industry leading to yet another rude awakening? The answer: the transformation of health care is inevitable, and it is has already begun. That’s not a campaign slogan. It is a recognition of the shifting structure of needs, demands and power within the health care system.
To be sure, over the last twenty years change has been thwarted again and again by structural realities in health care that seem immune to progress. Among many, two stand out. First, the system reflects a culture of disease, not health. The payment and reimbursement structure is for office visits, procedures and interventions, while that for health, maintenance and prevention is limited. As a result, physicians need to treat as many patients as possible in face-to-face sessions, limiting the time, efficiency and quality of the average interaction significantly. Hospitals focus on investments that generate procedure and intervention-based revenues, and can actually be penalized financially by quality that keeps patients off the wards and out of the surgical suites. And medical product developers direct their innovation toward potential products that fit within this existing structure, such as expensive specialty drugs and surgical instruments that are focused on heroic, end-of-life care for a relatively small percentage of patients, not those struggling for years with the self-management of a chronic condition.
Second, in many ways the system rewards incrementalism, not breakthroughs. Medical product companies have been required to bring new drug and device products to market through a regulatory system based on narrowly defined trials in small, highly selected clinical populations that do not reflect the general population or how these products will be used in the real world. On approval, we have then been able to largely dictate pricing and use, broadening the intended market over time and generating enormous profits, with little post-approval surveillance on actual health benefit and potential safety issues. This combined with the event-driven financial structure discussed above means there has been little incentive to invest broadly in new models of product development, care delivery, product personalization and outcomes assurance.
But in recent years we have seen the elements of fundamental change building. Picture each of the key players and what they face in the stormy present. The FDA is an agency between a rock (pressure by patients and industry to speed important new product approvals for unmet medical needs) and a hard place (outrage in government, media and society when approved drugs turn out to cause harm not detected in clinical trials). To save itself, the agency is beginning to advocate for a new drug development paradigm that integrates modern molecular and information technology tools. For pharmaceutical and other medical product companies, pricing power has shifted dramatically beyond their control. Medicare and private insurers have increasingly sophisticated databases of real world product usage, outcomes and safety; regardless of what the clinical trials reported, payers are now determining on their own how valuable a new product is, whether or not they will allow coverage, and what price is justified. In response, pharmaceutical companies are now investing agressively in ways to personalize their products and build outcomes into the product systems themselves, in many cases using biomarkers, sensor-based devices and information technologies. For self-insured large employers, rising health care costs are unsustainable, leading to enormous political pressure to change the system and determine new models of care management, delivery and reimbursement. For physicians, particularly in primary care practice, the pressures of the current health care system and the inability to fully care for their patients in the way they desire, are also leading to movements for change. With all these pressures from within the box of the current system, the lid is beginning to open, and next generation health initiatives, technologies and solutions are beginning to break out.
A reader recently submitted a comment based on our posts about the support required for better health decisions and the new technology products being developed to provide this support. The comment focuses on the significant barriers to health system and user adoption and the hurdles to widespread use of such personalized, information-rich health products.
Let’s start with the inability or disinterest of many individuals to use health monitoring and therapy optimization innovations that would allow them to play a greater role in managing their own care. Our reader commented: “Unfortunately, I think the majority of the population is just not motivated enough to take a proactive role in their health care, especially in preventive health care, unless they have immediate financial incentives.”
We discussed this topic with Dr. Joseph Kvedar, Director of the Center for Connected Health, a unique organization formed by Partners HealthCare to engage patients, providers, payers and policy makers on new ways to deliver quality care outside of traditional medical settings. Dr. Kvedar talked about two small studies that have preliminary, but very relevant findings. The studies looked at different technology-based patient physiologic monitoring and personal data-driven coaching interventions. The coaching included the use of online communications and virtual, computer-based intelligence coaches.
Say hello to your virtual coach
He noted that the studies show simply providing accurate physiologic information to an individual has almost no benefit on its own. However, Dr. Kvedar continued, “By monitoring a relevant physiologic signal–like blood pressure or whether you took your medications or not–and presenting that information to the individual in a way that is maximally engaging to them–such as in a dynamic website–we estimate that 10% of individuals will move to a healthier behavior. These are the ‘manage what you measure’ types and what they need is the measurement presented in the right way. If we add data-driven coaching, meaning that the individual feels that someone–virtual or real–is helping them, the percent of individuals that will move to a healthier behavior goes up to 50 or 60%. The remaining 40 or 50% are probably people who are not yet ready to contemplate that they need to change behavior to become more healthy.“
This research suggests that the right technology products, implemented in the right way, might be adopted by a majority of people. A requirement is that the new connected health tools are designed to be highly personalized and connected to data-driven support at the same time. The reader’s comment also points out ways to capture and support even more people, perhaps even the lagging 40-50% Dr. Kvedar mentioned: incentives. We have financial, social, aspirational and other incentives as part of most of our daily decisions, and health and wellness should be no different. For example, if I take my medications as prescribed and monitor and share this through a connected health system, and if this personal behavior slows or prevents my disease progression in a way that reduces expensive interventional care in the future, shouldn’t I be rewarded for that by health insurers, employers and product innovators with lower copays, free or reduced priced medicine, wellness rewards or other incentives? There are many studies underway to test incentive-based behavior change, some integrating novel connected health tools. An article published last week in Technology Review describes a program at the Innovations in International Health project at MIT, where tuberculosis patients using a medication adherence diagnostic device tied to mobile phones are rewarded for their drug taking consistency with cell phone minutes. If we develop connected health products and systems with the right features, support and incentives, real people will use them.
When our drugs, medical devices and wellness tools become smart, and when the resulting personal health information is linked to mobile and internet-based systems, who or what is going to control all that? We conducted a poll to find out what people think the use and control of such personal information will look like ten years from now.
The poll was done on the LinkedIn business social network. First, a few major caveats. LinkedIn provided a very quick and easy way to poll (e.g., posting to completion was done in just a few hours), but the tool has some big limitations. The poll is small (54 responses) and not statistically significant because they place payment requirements on larger polls. In addition, the wording length, and therefore the ability to convey the full meaning of an answer, is severely constrained by the LinkedIn tool. Still, it was fun to obtain such fast results, and they are interesting. You can find the complete results here, including analysis by respondent title, company size, job function, age and gender (a LinkedIn membership is required).
Our goal was to contrast the current use of personal health data (controlled by providers like the Mayo Clinic) with three possible futures–control by consumer and health services-focused companies (like Visa does today for similarly sensitive financial information), control by the individual (like LinkedIn and Facebook allow us to do today for our personal relationships), and a bleak, out of control situation (like FEMA during Katrina). 55% of those polled think they will be in control of their personal health information in 10 years. Another flaw in this poll is that we are asking the opinion of people who have self-selected themselves into an individual control-based social networking site…and so the results in this population are perhaps not so surprising. But even this endorsement of the future health-empowered individual was tempered by 40% who thought the situation would look either similar to today (like Mayo Clinic) or worse (like FEMA). Only 3% thought the future of our health information looked like Visa.
There are some interesting nuggets in the demographics behind the poll results. People from medium sized companies had the most mixed responses: 44% Mayo, 22% Visa, 22% LinkedIn, and 11% FEMA. Do these companies struggle the most with our current healthcare system and appreciate complexities that will shape and limit the future that others do not? In the age demographic, the older the respondent, the less likely their answer was for a future that looked like the provider control of information we see today: 33% of age 18-24 bracket, 20% of age 25-34, 16% of age 35-54, 0% of age 55+. As we get older and increasingly confront disease and health challenges, do we recognize the need to control our health information more and not rely on institutions? In the gender demographic, 36% of women vs. 15% of men thought our health information future looked like FEMA! Do women see our healthcare system in ways men do not because they have a different window on their own care and that of their children and elderly parents? If so, isn’t it critical that women have an increased voice in the development of health policy and new health innovations, services and products?
Interesting questions that this little poll can only prompt but not answer. If it is true that the future of our personal health information is around individual control, this will require significant changes in legal protections for information privacy and use, new products for storing, manipulating and sharing this information, portability between provider-based electronic medical records and personal health records, and numerous other new and improved things. The first generation of many of these tools exist today and are exciting.
We will be reviewing them in subsequent posts, but for now look at Microsoft’s HealthVault, Google Health, and Patientslikeme to see where this is going. And please take the poll yourself in the interactive graphic above; it is now delivered via PollDaddy and is worded in the way originally intended without LinkedIn’s artifical restrictions. We will check back and review the results periodically.
In our last post (“Behavior, disease and the support required for success“) we discussed how better lifestyle, diet and therapeutic choices can actually halt and reverse disease progression, but noted that the scientific literature establishing this is based on a level of caregiver support that is unrealistic for the general public. In future posts, we will review and discuss new technologies in development that aim to solve this problem by enabling continuous, ‘anywhere-anytime’ therapy delivery, wellness monitoring and decision support systems. However, many of these approaches will not be broadly available for several years. How can we fill the gap and get started today?
SportBrain's iStep
There are some widely available and increasingly interesting products that are beginning to provide a map to the intelligent medicine future. These products measure and connect us to something obvious, simple and incredibly powerful: our physical activity. I have been using an internet-connected pedometer from SportBrain for a few months now. The iStep product, like many similar devices, connects my daily steps and overall level of physical activity to a personal website where I track my progress, benchmark myself against the activity of others in my demographic, and have online community support tools available. For me, the access to this continuous information and the online support tools has been very motivational, and my average steps per day has increased from around 4,500 to 12,000. Nike and Apple have also developed a very slick product system in this field, where a Nike+ shoe sensor communicates with a wireless iPod receiver to transmit work out
The Nike+ Sensor
information, link run intensity to personally motivating music, and connect the user to an online world of virtual races and like-minded groups. Similar capability is also beginning to be integrated into mobile phones–Nokia’s 5500 Sport phone is a good example. More complex and integrated systems have been developed by such companies as ActiHealth and BodyMedia. In each of these cases, the activity monitoring technology is getting more sophisticated and the key is presenting, shaping and connecting the user’s personal information in a way that will support behavior change and better wellness choices. The scientific literature shows how powerful this can be; see a recent Journal of the American Medical Association paper concluding that the use of a pedometer is associated with a significant increase in physical activity and decrease in body mass index and blood pressure.
Activity monitoring will continue to play a critical role in next-generation intelligent medicine products. As we develop our intelligent pharmaceutical products at Proteus, we are integrating sensors of drug ingestion with sensors of physiologic response to therapy. Physicians have consistently ranked change in physical activity as one of the key measures they would like to have to better optimize therapy with their patients, and this is true across areas as diverse as cardiovascular, metabolic, psychiatric, inflammatory and other diseases. How we move around, and how this changes over time, is a key window into our health, and is as important a biomarker as any new more sophisticated molecular tests that will be developed in years to come. So start monitoring your own activity now and connect to this first phase of intelligent medicine.
Healthy living can alter the gene expression and cellular changes underlying disease. Recent scientific studies have demonstrated that genes associated with cancer, heart disease and inflammation are turned on and off in a systematic manner based on improved diet and exercise, and in patterns that reverse the course of disease progression. It turns out an apple a day can keep the doctor away.
In a Wall Street Journal article published today, three leading researchers in alternative and holistic medicine make an impassioned case that lifestyle changes should receive equal or greater billing with pharmaceuticals and surgery in our health care system. But their own scientific studies demonstrate how challenging that would be to implement successfully across large populations. In the study “Changes in prostate gene expression in men undergoing intensive nutrition and lifestyle intervention“, published last year in the Proceedings of the National Academy of Sciences, the authors suggest that genes linked to prostate cancer can be altered for the better through improved behavioral choices. (You can find a copy to the right in the Blog Information Box). The Materials and Methods section of this paper details how extensive–and unrealistic–this intervention would be for adoption by millions of people. Study participants had weekly support by nurses, dietitians, exercise physiologists, clinical psychologists, stress management instructors and group sessions. I haven’t seen any of those people in my life over the last week. Have you?
The only way to scale these kind of results, and the deep individual-specific support required to help people make better lifestyle and wellness choices, is through technology. We can’t all have our own nurse, psychologist or group session on call, but we can use computer and sensor-based wellness management tools that could deliver the same, and perhaps better, support and results. We have begun using the first generation of such tools at the Intelligent Medicine Blog, and will begin reviewing them in the next post.
Posted by David O'Reilly 
information will look like ten years from now.
of their personal health information in 10 years. Another flaw in this poll is that we are asking the opinion of people who have self-selected themselves into an individual control-based social networking site…and so the results in this population are perhaps not so surprising. But even this endorsement of the future health-empowered individual was tempered by 40% who thought the situation would look either similar to today (like Mayo Clinic) or worse (like FEMA). Only 3% thought the future of our health information looked like Visa.
It turns out an apple a day can keep the doctor away.
