Editor’s note: For more on engaging patients to be active participants in their own care, see the February issue of Health Affairs, “New Era Of Patient Engagement.”

The pharmaceutical drugs developed over the past two decades have helped us more effectively manage, and in some cases dramatically change, the outcomes of patients with hypertension, high cholesterol, diabetes, and even some cancers. Increasingly, though, the stroke of a prescription pen doesn’t solve all patient problems. Nor does it solve the problems in our health systems.

To really fulfill the potential of health care, we need patients who are engaged, patients who take “actions (as) individuals … to obtain the greatest benefit from the health care services available to them.” (See Exhibit one below, click to enlarge)

Leonard Kish recently called patient engagement “the blockbuster drug” of the century. It’s an exciting idea and an apt label that raises an interesting question: what would an “engagement pill” actually look like?

Exhibit One: Conceptual differences between a “traditional” and “empowered” patient

There’s little basic science to guide us, no animal models to refine our understanding, no clearly defined profession with the right expertise, and no clear economic framework to develop products and align incentives. But the Internet, fixed and mobile, may give us the best clues. We have already seen that when nothing else exists, patients and caregivers develop their own ways to exchange information, including online message forums or support groups.

Unlike the innovations in chemistry and biology that drove pharmacological industrialization in the 20th century, a combination of informatics, design, psychology, and unanswered user needs has driven innovations in health-oriented social networking. The Internet now has the potential to become a new kind of research center and even the means to distribute an engagement pill. It also has the potential to bring together patients, payers, researchers, and clinicians to create the ultimate engaged patient.

Does it all sound too good to be true? If our experience at PatientsLikeMe with epilepsy patients is any indication, it’s already happening today.

Lessons From Epilepsy

Epilepsy is a recurrent seizure disorder that affects some 2.3 million Americans, and may be responsible for as much as $10 billion in U.S. healthcare expenditures annually. Although many patients can control seizures with medication, even one seizure a year has a substantial impact on their quality of life and the healthcare choices they make. Improving the engagement of patients with epilepsy may serve to improve quality of life, especially for those who will never be free of seizures. Even for those patients who have lived with uncontrolled epilepsy for years, an increase in engagement can substantially improve health outcome.

A number of professional-led engagement programs have been piloted. These include the Managing Epilepsy Well (MEW) Network, which features web and phone-based programs to help epilepsy patients manage depression themselves. Such programs overcome the common limitations of traditional classroom-based approaches, such as high staff and facility costs, low patient motivation, and the challenges inherent in transferring knowledge from the professional to the patient. They do not, however, promote the sharing of information that is so key to helping patients become more empowered and increasing our collective understanding of disease.

First, Connect: The Benefits Of Patients Helping Each Other

PatientsLikeMe is a patient network that improves lives and a real time research platform that advances medicine. Patients with chronic illnesses such as epilepsy use the website to track their health, including treatment and symptom data, and share their experiences and data with other “patients like me.” Our development of epilepsy-specific community tools (sponsored by the pharmaceutical company UCB) has been described previously; the key difference from other services such as MEW is the emphasis on shared data. Every patient on PatientsLikeMe can see the complete health record of every other patient. This helps them learn more about their own illness, get support from others with the same condition, and use the information to improve their outcomes. It also contributes to research, because PatientsLikeMe de-identifies and aggregates the data and makes it available to companies focused on improving products, services, and care.

Regular users of the epilepsy community on PatientsLikeMe reported a number of specific benefits from a list of twenty. For instance, 55 percent agreed it helped them learn more about seizures, 27 percent agreed it helped them be more adherent to their medication, 27 percent said it helped them reduce the side effects of treatments, and 18 percent suggested they needed fewer visits to the emergency room, all directly as a result of their interactions on the site.

Despite a mean seizure duration of 23 years, prior to joining the site one in three epilepsy patients said they didn’t know anyone else “in the real world” with epilepsy with whom they could discuss their condition. After joining the site, two-thirds of these previously isolated patients reported knowing at least one person they could connect with. In fact, the number of social ties with other patients with the same condition influenced the number of benefits they experienced. As shown in Exhibit 2 below (click to enlarge), users without any friends on the system experienced an average of 5 benefits out of a possible 20, but those with ten or more friends had double the number of benefits. The effect remains significant even controlling for the number of times the patient logged in to the site.

Exhibit Two: Relationship between benefits experienced by epilepsy patients and number of social ties in the social network (Reproduced with permission from Wicks et al. 2011, Perceived benefits of sharing health data between people with epilepsy on an online platform, Epilepsy & Behavior 23:16-23, Elsevier)

Policy For Optimized Epilepsy Management (POEM) Collaboration With The Veterans Health Administration And Epilepsy Centers Of Excellence (VHA ECOE)

The POEM project, funded by UCB, seeks to formally test the potential benefits of the platform for U.S. Veterans with epilepsy.  We believe, and hope to show, that the use of the PatientsLikeMe network and epilepsy-specific tools and resources will result in measurable improvements in self-efficacy and self-management. If successful, we may explore implementing an “Information Prescription” for U.S. Veterans with epilepsy throughout the VA system, and investigate whether improved self-management of epilepsy in these patients will lead to quantifiable, concrete benefits in health outcomes such as better medication adherence, reduced ER admissions, and better interactions with healthcare professionals.

Lessons Learned

The primary lesson we have learned is that patients who connect directly with one another may be capable of improving the behaviors that enable engagement. Systems like PatientsLikeMe encourage the type of sharing and social support more often available “offline” in antenatal classes, Weight Watchers®, or Alcoholics Anonymous. PatientsLikeMe also merges these narratives with data-rich patient-reported outcomes.

By linking the data and the experience, each social tie is not merely a conversation, but an opportunity to look at the structured data of another patient and to see their treatment history, side effects, and seizures plotted against outcomes like quality of life. Exhibit Two offers a tantalizing glimpse of a “dose response” and hints that patients themselves represent the “engagement pill.” They just need access to the tools of the new “industrial revolution” of patient engagement.

The second lesson we have learned from both epilepsy and other chronic conditions is that when patients share stories, offer support, or critique a poor health decision by another patient, this knowledge and advice is treated differently than when it comes from experts, health care professionals, or policy officials. The inherent empathy patients have for one another makes a significant difference.

The third lesson is that online patient community engagement is, compared to other things, a relatively safe “drug,” which cannot be always be said for traditional healthcare institutions or interventions. The safety monitoring systems for online engagement interventions focus on the prevention of bullying or cyber-stalking, as well as repelling spam or false information by peddlers of quack therapies. Unlike a static database of health information, the average profile on PatientsLikeMe is viewed multiple times per day, allowing patients themselves to act as the immune system for detecting bad actors in the system.

The fourth lesson is that online systems must remain flexible and customizable based on user needs. During the POEM pilot experience with the VA, it became obvious that our seizure meter, developed for the highly activated self-selecting epilepsy user in the general population to track the severity of their seizures, was unsuitable for the study population.  This observation prompted an intensive re-engineering effort that is now reflected in the full study launch and patient experience. (See Exhibit 3 below, click top and bottom halves separately to enlarge.)



Exhibit Three: Two versions of a seizure meter for patients with epilepsy. “Version One” at top required users to be able to name their seizures and recall relative severity; while elegant, it was too complex for most patients, who can not name their seizures or recall severity. “Version Two” developed through POEM user testing simplifies this to a simple count of seizures, identification of relevant triggers, and optionally whether the patient lost consciousness in any of their seizures.

This leads to the last issue, which is the importance of developing a common language for patients, clinicians and researchers. Many patients from the POEM pilot study could not accurately understand the medical terms used to describe their epilepsy syndromes or seizure types.  Patients expressed frustration about this, while physicians and health researchers worried about the ‘accuracy’ of the patient-reported data.  True engagement requires a clear way to describe a condition, its severity, and its history that is understandable to the patient, specific enough for the clinician, and comprehensive enough for clinical researchers to draw conclusions on the impact and characterization of the disease. This will form a significant body of work which we hope to explore in the coming years with our patient-centered research partners.

Who Builds The New Pipeline?

It is worth considering briefly the enormous infrastructure of pharmaceutical development built up in the past 100 years, through basic science, animal testing, research and development pipelines, clinical trials, regulatory agencies, marketing, and the healthcare infrastructure that delivers it all. Though rigorous, it is inherently un-scalable and will struggle to produce new interventions at the rate required by an aging population.

Many questions remain, however. What fraction of that energy are we willing to invest in this new area of engagement medicine and what fruits could it yield? What economic models do we need to support innovation in engagement on the order of magnitude devoted to medications? In years to come will we recognize (and reward) patients for their role as “active ingredients” in care? To realize the potential of the engagement pill we will need to build a new pipeline that can adequately address the challenges of the next hundred years of medicine.