Improving Chronic Disease Self-Management through Social Networks

Abstract

T he increased incidence of chronic diseases, such as heart disease, diabetes, cancer, asthma, arthritis, dementia, and a range of disabling neurological conditions, represents a significant challenge not just to the US health care system but worldwide. Nearly 133 million Americans—almost half of adults—had at least 1 chronic condition in 2005.¹ The number is projected to increase by more than 1% per year by 2030, resulting in an estimated chronically ill population of 171 million.¹ Chronic illnesses also are a major contributor to health care costs; the medical care costs of people with chronic illnesses represent more than 75% of the $2 trillion in US annual health care spending.² In addition to health care costs, chronic illnesses lead to other indirect costs to the economy through loss of productivity and loss of work days.

Conventional medical care is largely designed to diagnose and treat people with acute conditions and often provides fragmented care for people with chronic conditions. Overwhelming evidence assembled by the Institute of Medicine (IOM) confirmed that a large proportion of chronically ill patients do not receive either proven clinical or behavioral interventions or adequate information and support for self-management.³ These deficiencies in chronic care produce unacceptably high rates of inadequate disease control and preventable deteriorations and complications.⁴ Because people with chronic conditions live 99.9% of their lives outside the health care system, how they manage and prevent chronic diseases makes all the difference. Recently, providing more patient-centered health care as a possible solution to the problems that arise from mediocre, fragmented, costly health care has attracted interest from policymakers and stakeholders.⁵ The Internet, particularly social networks in health and other types of social media, provides patients with new opportunities to share health information easily and to convene their social networks to achieve their disease treatment and self-management goals. A recent survey reported that of the 74% of American adults who use the Internet, 80% have used it to find health information and 62% have used social network sites.⁶ Being in a community, patients can reach out daily to fellow sufferers to acquire the wisdom of crowds for chronic care and treatment, to get emotional support, and to use the power of social networks to manage their conditions and change their lifestyles.

Crowdsourcing Chronic Disease Diagnosis and Treatment

A central tenet of modern medicine is to assure that patients receive the most effective treatments for their specific conditions. An important challenge for the US health care system is the lack of evidence regarding the clinical effectiveness of different treatments and health care practices. Currently, most treatment decisions are still based on physicians' clinical judgments, rather than the application of rigorous evaluation of scientific evidence.⁷ According to a national survey of the American public, more than 60% of caregivers of people with chronic diseases stated that they received conflicting medical advice from different providers, as did nearly 45% of people with serious chronic conditions.⁸ More than 50% of caregivers of people with chronic conditions and more than 50% of people with serious chronic conditions stated that for the same set of conditions, they received different diagnoses from different providers.⁸ An IOM report in 2000 highlighted the staggering impact of medical errors on patient morbidity and mortality in the US health care system.⁹ Incorrect prescriptions and administration of medications comprises a substantial proportion of medical errors in the United States, causing adverse drug events that negatively affect patient outcomes.¹⁰ In the past, people liked to share information in their social networks about what remedies work for what illnesses. Then we all became isolated and passively followed the doctor's orders. But now, armed with the information collected online, patients will increasingly participate fully in decisions affecting their lives.

The proliferation of social networks in health is building a new health care business predicated on the belief that the wisdom of crowds is truly smarter than any 1 person, no matter how well educated the person is. When patients with the same chronic disease share symptoms, treatment options, and outcomes with each other, their collective wisdom can yield clinical insights well beyond the understanding of any single patient. Through social networks, patients could find someone with a similar symptomatology and disease history to confirm diagnoses, validate physician-recommended treatment, or seek alternative therapies. The power of community helps patients notice details that doctors overlook, prevent medication errors, and improve their chances of finding the most effective biomedical and behavioral treatments.

Improving Disease Self-Management

Patients with chronic illness must cope with their diseases for many years and even decades. The traditional 15-minute face-to-face doctor visit is not always the best way to teach patients necessary knowledge and skills for disease management. Quality community support can make a real difference, helping patients to self-manage their diseases, preventing complications and comorbidities, and enabling patients to attain the best possible quality of life.

Patients living with a chronic condition might feel affected not just physically, but also emotionally and socially. Some patients feel vulnerable, confused, and anxious about their health and future. Others feel depressed or disappointed in their bodies. Many patients struggle with the emotional and social demands of their illness without much help or support from medical care. Positive and encouraging social networks can be critical to help patients through the stress of tough times and to reduce psychological distress. Suppose a breast cancer patient feels sad and depressed after each chemotherapy session. She was terribly isolated in her geographic community without in-person access to patients with the same illness. Now, online she has a new lease on life, being able to interact and get support from patients like her. Getting simple warmth and nurturance from people who genuinely want to help her can have a positive effect on her mental well-being. Online counseling, advice, and mental health services can help patients learn how to cope with the pressure and pain.

Disease self-management is central to improving patient outcomes. For example, pharmaceutical treatment plays an essential role in diabetes. If patients do not understand the medicine and dosages they take, their blood glucose control may be negatively affected. Furthermore, the possibility of developing hypoglycemia may be increased. Most people living with a long-term illness find that information and education is power; the more they find out about their condition, the more they feel in control and the less frightening it is. For example, cancer patients can obtain the best guidance about treating cancer from the National Comprehensive Cancer Network (www.nccn.org). Informed, engaged patients will understand the disease process, and build the confidence and capacity to participate fully in planning and self-managing their health. They interact with the health care system productively, improve medication adherence, and monitor signs and symptoms in need of attention.

Continuous decision making and adjustments to changing circumstances are essential components of disease management. In business, economics, and other fields, decisions will be based increasingly on data and analysis rather than intuition. Health care also can be much more evidence based. A data-driven social network such as PatientsLikeMe (www.patientslikeme.com) not only enables its members to share condition, treatment, and symptom information in order to monitor their health over time and learn from real-world outcomes, but also breaks down their symptoms and treatments into hard data to improve decisions about care and treatment. What treatments is a patient on relative to other patients? Is her disease progressing fast or slow? Given her status, what is the best outcome she can expect and how can she achieve it? What are the potential health risks, and how can they be prevented? This is real information that will help a patient make sound day-to-day decisions about her health. The quality and effectiveness of the decisions are strong determinants of patient outcomes. If we all did our best to share our experiences and scientific knowledge, to help others, and to turn our experiences into hard numbers, presumably we could improve our decision making and health outcomes.

Promoting Healthy Lifestyles

The implementation of lifestyle-based interventions is the key to stop the disease progression and to regain and improve health. “He who takes medicine and neglects to diet wastes the skills of his doctors.” This ancient proverb highlights the importance of lifestyle-based interventions. Chronic diseases such as diabetes and obesity are more often a social and behavioral disease than an inherited disease. Over many years, people have created their chronic condition in their bodies through modifiable factors: unhealthy diet, physical inactivity, tobacco use, excessive alcohol consumption, and other risk factors. If a patient wants to halt the disease progress, he or she must pursue a healthful lifestyle based on exercise, healthy eating, and the avoidance of tobacco, alcohol, and other poisons. Traditional medicine works great for an acute condition such as an infection or broken bone, but it is not effective for serious, complex chronic diseases. It actually may backfire and/or boomerang; for example, people taking statin drugs may assume they can eat fatty fast food because the pills protect them from heart disease. Effective disease self-management must default to prevention and healthy living.

A social network can be used as a milieu for delivering information and tools for a healthy lifestyle. Increasingly, patients are turning to the Internet for targeted and timely information and innovative solutions for healthy living. Evidence-based health information ensures that patients and their families become more knowledgeable and engaged in their lifestyle changes. Social networks also hold promise for a wide-scale promotion of lifestyle-based interventions such as smoking cessation or healthy eating programs. Web sites like Harvard Pilgrim's Well Then (www.wellthen.org) and DailyStrength (www.dailystrength.com) provide users with the opportunity to share information and stories about healthy living, thereby supporting and inspiring others to be as well as they can be. Online communities can capitalize on patients' needs and preferences and engage with them on a daily basis. Unlike face-to-face interventions, online lifestyle-based programs have the potential to reach broad populations because they are available anywhere and anytime via the Internet, and could be hosted by both government and nongovernment agencies.

What to Do

People who live with a chronic disease face many challenges, both medical and social. Their actions and decisions could make a real difference to their outcomes and could have a significant impact on the quality and even the length of their lives.⁵ A basic chronic disease self-management guide may include the following. First, it is vital to receive and carry out the most effective biomedical or behavioral interventions successfully. Although modern medicine has made great progress in developing treatments for chronic diseases, enormous uncertainty still exists in medicine. Hence, patients are likely to benefit from crowdsourcing the right diagnosis and treatment from the community. Second, patients will benefit the most from effective treatments if and only if they have the knowledge and skills to participate in their health and health care. Transition from traditional passivity to active, informed participation is not an easy process. From this perspective, social networks can play an important role in providing health information and education. Social networks also provide an array of tools and services that help patients manage complex drug and lifestyle regimens. Last but not least, patients must practice a healthy lifestyle in all aspects of life. Advances in modern medicine make it possible for those with chronic diseases to live long and well with their disorders, but to achieve the best health outcomes they must change unhealthy lifestyles and stop fostering the disease. Social networks help to harness the power of community to change unhealthy behaviors and promote health.

Footnotes

Disclosure Statement

Dr Li declared no conflicts of interest with respect to the research, authorship, and/or publication of this article. The author received no financial support for the research, authorship, and/or publication of this article.

References

, Green

. Projection of Chronic Illness Prevalence and Cost Inflation. Santa Monica, CA: RAND Health, 2000.

Anderson

, Horvath

. The growing burden of chronic disease in America. Public Health Rep, 2004; 119:263–270.

Schuster

, McGlynn

, Pham

, Spar

, Brook

. The quality of health care in the United States: A review of articles since 1987. Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press, 2001; 231–308.

Wagner

. Chronic disease management: What will it take to improve care for chronic illness. Eff Clin Pract, 1998; 1:2–4.

Center for Advancing Health. A new definition of patient engagement: What is engagement and why is it important? http://www.cfah.org/pdfs/CFAH_Engagement_Behavior_Framework_current.pdf. 2012 December 17.

Fox

. The social life of health information. 2011. http://pewinternet.org/Reports/2011/Social-Life-of-Health-Info.aspx. 2012 December 17.

Wagner

, Bennett

, Austin

, Greene

, Schaefer

, Vonkorff

. Finding common ground: Patient-centeredness and evidence-based chronic illness care. J Altern Complement Med, 2005; 11:S7–S15.

Partnership for Solutions. Chronic conditions: Public perceptions about health care access and services. http://www.partnershipforsolutions.org/DMS/files/polling_final.pdf. 2012 December 17.

Institute of Medicine. To Err Is Human: Building a Safer Health System. Washington, DC: National Academies Press, 1999.

10.

Chang

, Ronco

, Rosner

. Computerized decision support systems: Improving patient safety in nephrology. Nature Rev, 2011; 7:348–355.