Thursday, May 12, 2016

Lupus AwarenessMay is Lupus Awareness Month—31 days that are nationally recognized for raising awareness and understanding of lupus, a chronic autoimmune disease that affects at least 1.5 million individuals in the U.S. For me, these 31 days are a time to reflect on just one individual’s journey with this disease—my mother’s.

My mother’s boisterous and fanatical high school years were suddenly plagued by mysterious health issues that frequently landed her in the hospital. At an early age of 18, she was diagnosed with systemic lupus erythematosus (SLE), or lupus, which caused recurring symptoms of fatigue, fever, joint pain, dry eyes, and other mild symptoms. Because the body cannot differentiate between “foreign invaders” (bacteria, germs, viruses) and healthy tissues and organs, it produces autoantibodies that attack healthy parts of the body, including skin, joints, blood cells and/or internal organs. The effects of the disease can occur in episodes, or flares, that may eventually subside into periods of remission. For my mother, these flares resulted in numerous ocular (eye) surgeries and orthopedic procedures, including a total knee replacement later in her adult years. Amidst the ongoing challenges lupus presented, my mother has been able to manage her symptoms with modern day medications, adequate health insurance, and an array of health care providers that keep a good pulse on her condition.

As if navigating the health care system isn’t challenging enough, lupus requires routine management of all organs in the body to ensure symptoms are addressed early to prevent permanent damage. That means routine visits to a primary care physician and multiple specialists—a rheumatologist, hepatologist, dermatologist, nephrologist, and so on. For someone with lupus, managing your personal health care can be a part-time job, and for my mother, it was (and guess who got dragged along to all those medical appointments?). In addition to managing her demanding health care calendar, she has spent countless hours on the phone with medical offices and insurance representatives; conversations often related to medical necessity and coverage for treatments and procedures related to her condition.

Our evolving economy is reshaping American lifestyles, making it easier to do almost everything—from cooking to cleaning, shopping, and completing household tasks. Even our “fast food” restaurants are becoming faster, allowing consumers to place an order online for pick-up. Numerous industries, including transportation, clothing and food, are booming with new startups that provide on-demand access to products and services, typically using a common smartphone platform. Well-known companies like Peapod, Instacart, Blue Apron, Plated, and Hello Fresh provide delivery services for groceries and pre-portioned ingredients for meal preparation. With the convenience, simplicity, and seamless experiences these companies provide, it’s a surprise the health care industry is lagging a few steps behind in providing that same value to patients. Despite the increasing prevalence of digital, telehealth, and on-demand services like urgent care and CVS MinuteClinic, the health care industry is still far from where it should be.

Cultural and socioeconomic forces are slowly driving the shift in health care with the aging Baby Boomer population, increasing prevalence of chronic conditions, and the pressure of Accountable Care and value-based reimbursement models on physicians, hospitals, and health systems to provide quality care at reduced costs. Other trends in health care are being driven by Millennials—empowered patients who want their own health information, visibility into health care costs, and the ability to make educated decisions about their doctors and their care—and they rely heavily on technology to do so. Just as Uber has transformed the taxi-cab industry, similar innovative startups are pioneering this customer-centric business model in health care. The shift from “hospital first” to “patient first” has already started to occur with the introduction of on-demand health care service models that aim to promote collaboration among providers in delivering cost-effective, high-quality, and convenient services to patients.

Pager, Inc., the developer of an interactive mobile application for health care, partnered with Evolution Health, a provider of mobile integrated health care, to deliver customized patient experiences using a telehealth technology platform. The service connects patients to the appropriate clinical resources, schedules the medical visit or tele-consult, and coordinates transportation via ride-sharing services like Uber. This alleviates the burden on the patient to manage referrals, schedule appointments, and manage their health records, prescriptions, and insurance coverage.

Caregivers of elderly adults also desire connectivity tools to track and care for their loved ones. Segue Technologies recently established Caring Village, LLC, which offers an online dashboard and mobile application platform. It allows users to build an online village for their loved ones and invite family members, friends, neighbors, and professional caregivers to participate in managing their care. The tool features a wellness journal, customizable calendar of events, sharable to-do lists with reminders, secure in-app messaging, and caregiver preparedness checklists that make it easier, safer, and less stressful to care for an elderly loved one.

As health care professionals, we must stay abreast of market trends across all industries to help foster similar customer-centric business models within health care. As consumers, we must consider our own personal health care experiences, and determine what we want to see in the future in regards to how our care is delivered and managed and the platforms that are used. Health care providers, insurers and other organizations are increasing focus on customer satisfaction; providers especially are facing Medicare and Medicaid reimbursements tied to hospital and consumer survey scores. We, as consumers, can help shape the future of health care simply by providing our feedback and satisfaction to our providers. Everyone has individual preferences for how, when, and where their care is provided, and we must share those preferences in order to impact change.

Regardless of personal preferences, allocating several hours out of your day to schedule and attend appointments, call in prescriptions, speak with insurance representatives, etc. is just not feasible in today’s society. Convenience is important—especially to my social, jet-setting mother. She’s off to Chicago and then a Caribbean cruise this month.


All postings to the Health Policy Forum (whether from employees or those outside the Institute) represent the views of the individual authors and/or organizations and do not necessarily represent the position, interests, strategy, or opinions of Altarum Institute. Altarum is a nonprofit, nonpartisan organization. No posting should be considered an endorsement by Altarum of individual candidates, political parties, opinions or policy positions.


 

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