Essay: The Patient Engagement Phenomenon by Jay Srini

Jay Srini is the Chief Strategist at SCS Ventures where she works with international startup companies focused on HIT and other established organizations on business development, healthcare strategy and expansion. She is also CIO of KEWGroup, an Oncology Management Company in Cambridge. She serves as one of the commissioners at Certification Commission for Healthcare Information Technology in addition to her role as adjunct faculty at the University of Pittsburgh. She is an internationally known speaker on HIT and has chaired several national and regional HIT conferences. She serves on the board of Medrespond, Icache and PRHI as well as on the advisory board for Health Enterprise Partners.

For centuries, the patient has been a passive player in healthcare. The “medical priesthood” approach (coined first by Dr. Eric Topol, Director, Scripps Translational Science Institute) has perpetuated the belief that “doctors know best” and has left little room for empowering and engaging patients until now. Today, we realize that the majority of our healthcare costs are a result of chronic diseases, and it is clear that what appeared as dispensable in the past has become quintessential for good health.

The IOM (Institute of Medicine) defines patient-centered care as: Providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions. It is clear that patient-centered care is not possible without the focused engagement of the patient. The National Coordinator for Health IT, Dr. Farzad Mostashari has been quoted as saying, “Patient engagement is the blockbuster drug of the century.”[i]

The new emphasis on Patient Engagement has a significant impact on not only the end consumer’s health outcomes but also the transformation of the roles and responsibilities of the diverse stakeholders involved in the health of the individual.

The HITECH act, specifically the incentive payments for Meaningful Use (MU) also known as the EHR incentive program, has been instrumental in the rapid digitization of healthcare information at healthcare organizations through the implementation and adoption of Electronic Health Records (EHRs).

In addition, Patient Engagement, the second of five health policy priorities of MU, aims to improve patients’ understanding of their health and related conditions so they may take a more active role in their healthcare. It also encourages the involvement of patients’ families, as many patients depend on familial support.

Specifically, The Stage 1 MU objectives to foster patient engagement include the following:

• Provide patients with an electronic copy of their health information (including diagnostic test results, problem list, medication lists, medication allergies), upon request
• Use certified EHR technology to identify patient-specific education resources and provide those resources to the patient if appropriate
• Provide clinical summaries for patients for each office visit

Patients with chronic conditions such as asthma, cardiovascular disease, diabetes, and heart failure have to engage in self-management programs and make significant lifestyle changes as well. Patients who have access to their health information are more likely to adhere to their prescribed treatment plans and a medication regimen. Additionally, as they often require care from several specialists they can ensure that their health information is available for care coordination and that duplication of tests and procedures are eliminated.

The requirements for patient engagement criteria intensify when Stage 2 is considered and includes new objectives to improve patient care through better clinical decision support, care coordination, and patient engagement through bidirectional messaging with their clinician.

CMMS has estimated $17 billion in readmission costs that can be avoided if patients get the right care in the first place. This has led Medicare to levy penalties on readmissions in patients afflicted with heart failure, heart attack or pneumonia. As stated in a report by the Robert Wood Johnson Foundation, “The most common reason for avoidable readmissions is from gaps in communication. Patients simply don’t understand hospital instructions and may not have a caregiver to effectively guide them. Even with a caregiver, communications challenges can arise, with causes ranging from low health literacy to a lack of complete information.”[ii] To ensure better understanding at discharge and avoid readmission, it is critical that patients are more empowered throughout the journey from pre-admission to discharge and home care.

The Accountable Care model strives to meet the triple aim of lowering healthcare costs while improving both population health and care quality. These goals are clearly not possible without patient engagement, and this is more than messaging, portals, and content broadcasts. Behavioral Economics should guide us in evolving optimal patient engagement strategies by:

• Motivating members to take an active continuous role in maintaining and improving their health status
• Helping patients understand choices that are consistent with standard guidelines of care and yet aligned to their individual preferences
• Delivering improved clinical outcomes while optimizing clinical and financial goals

Medical non-compliance is estimated to increase healthcare costs in the US by $100 billion per year. Medication non-adherence may stem from unbearable side effects or complex dosing regimens or, in some cases, financial reasons. Often the reasons are simply a lack of understanding of the need for the treatment option or sheer inertia.

A current study entitled “Patient Inertia and the Status Quo Bias: When an Inferior Option Is Preferred” published July 30, 2013 in Psychological Science: A Journal of the Association for Psychological Science clearly demonstrates that when faced with a choice that requires them to make a proactive decision, people often opt do nothing, even when actions that are easy to perform could noticeably improve their current state.[iii] However, the research also showed that that people might be capable of making productive choices about their health if given a nudge in the right direction.

A second paper in the same issue of the Journal entitled “Reducing Health-Information Avoidance Through Contemplation” by Jennifer L. Howell & James A. Shepperd analyzes the results of three studies. Howell and Shepperd investigate whether prompting people to contemplate their reasons for seeking and avoiding the health information would make them more willing to receive medical results.

Conclusions from the two articles make the case for the authors’ statement: Simply asking patients to contemplate the reasons they would seek or avoid their screening results may make them more likely to follow up with their doctor, thus reducing the public health burden.

Rob Lamberts, an internal medicine pediatrics physician laments in a recent blog that, “Patient engagement is not a strategy”, rather a holistic philosophy and ecosystem focusing on the patient.[iv] He continues his blog indicating he desperately needs tools for:

• Communication – healthcare is a hassle, with communication relegated to the exam room. I want care to be easily accessible for my patients, using IT in one of its strongest areas: tools for easy communication.

• Collaboration – the patient should be engaged, but in a two-way relationship. This means they not only should have access to their records, they should contribute to those records.
• Organization – I want a calendar documenting visits, symptoms, problems, medications, past and future events in each patient’s record. I also want a task-management system I share with patients to make sure care gets done.

• Education – I want to practice high-quality medicine, care that is informed by good information and the best evidence. Why not do a yearly stress test? There’s evidence for that. Why not use antibiotics for sinus infections? There’s evidence there. Why use an ACE inhibitor to control the blood pressure? I need to be able to support my recommendations with data, not just “because the doctor said so.”[v]

The National ehealth Collaborative has taken the first step to address Dr. Lambert’s and other stakeholders’ needs by a providing a framework as common point of reference for developing the ecosystem of patient engagement.[vi]

The February 2013 issue of the Health Affairs, supported by the California HealthCare Foundation, explores “patient engagement”. The articles in this issue show that we are making inroads into tackling the complex problem and demonstrating progress albeit very incrementally. While there is solid consensus on empowering patients to consciously process information, decide how that information fits into their lives, and act on those decisions as key factors for successful health outcomes, the concrete steps to meet patients “where they are” and build on their often limited initial capacity to engage has lacked traction and momentum.[vii]

Therein lies the opportunity for innovative HIT players to develop, products solutions and services to cross the chasm. Several innovative companies like Eliza, Getwell and Silverlink have toiled over the years to capture the “voice of the consumer” and engage them through conventional channels like the phone as well as through the web. Digital health interventions, embracing social media, gamification along with the consumer’s insatiable craving for the smart phone hope to boost consumer engagement. Patient engagement focused HIT companies such as Medrespond, HealthCaws, Healarium, and Welvie are just a few of the multitude of new startups who are bravely entering this multifaceted arena, plagued with more failures than successes. They seem to understand the need for partnering with payers, providers, employers, and HIT “coopetitors”, to achieve the holy grail of improved outcomes. The mere integration of essential components: incentives, education, improved health literacy, self-management, share decision-making, and care-coordination is insufficient. A clear understanding of the Patient Centered Medical Home (PCMH) tenets for care, which involve a whole person orientation, care of the individual even when they are not in a doctor’s office or hospital, and a team based approach is crucial for success.

Have any of them cracked the code of utilizing the most untapped resource in healthcare –“sustained consumer engagement”? The jury is still out on this.

However, with a certain degree of confidence one may conclude there is no magic bullet but rather an intricate labyrinth of interconnected solutions that rely on a variety of approaches, technologies and processes spanning the healthcare ecosystem and its diverse stakeholders. Nurse home-visits, remote monitoring, telemedicine and m-health will have to work in unison and not as separate strategies. Those who succeed would recognize from the start, the importance of the unique patient preferences and needs based on their socio-economic status, cultural and religious beliefs. While technology may be critical for several components of the solution, leveraging the personal touch and face to face communication of family care givers and community resources will be just as important.

Patient engagement drives the evolution of healthcare from population health to individualized/precision health to preference health. Although the landscape is murky, we should remain optimistic that we will transform healthcare by keeping the patient at the center and thus embracing patient engagement as a central pillar; not an afterthought. We have no other choice. Healthcare is not a transaction – it is an ongoing conversation, a constant collaboration with the patient, their family and community

“So many of our dreams at first seem Impossible, then they seem Improbable, and then when we Summon the Will, they soon become Inevitable.”

– Christopher Reeve