Duke Personalized Health Blog

A Collaborative Effort: Preventing and Treating Childhood Obesity

Though the childhood obesity rate has been declining over the past several years, more than 1 in 6 children in the United States are still considered obese. Obesity takes both a physical and psychological toll on children. Obese children are more likely to be bullied, suffer from low self-esteem, and become depressed. They also face serious health risks such as a greater likelihood of obesity in adulthood, heart disease, type 2 diabetes, and cancer. Obesity risk is influenced by a multitude of factors including genetics, environment, access to healthcare, and behavior. However, often times the only factor that can be modified and controlled by the patient is behavioral decisions, which account for 30% of an individual’s health. Personalization of care starting in early childhood could be a strategy for properly targeting behavioral factors such as diet and exercise to continue the decrease in childhood obesity rates.

Childhood obesity is difficult to treat since children do not have full control over their health behavior. In fact, it has been found that parental health behavior heavily influences their children’s eating habits and preferences being formed in the first five years of life. Not only this, but with one obese parent, a child has a 50% chance of becoming obese. With two obese parents, this chance increases to 80%. Change cannot solely come from personal adjustments, but needs family support as well. Thus, treating childhood obesity means improving health behavior for the entire family. Personalized health planning between individual patients and providers has already been developed and is being adopted by many health providers. However, in order to effectively combat childhood obesity, personalized health planning for entire families needs to be further explored.

A study conducted by New York University’s Langone Medical Center found that over 90% of parents believed their overweight children were “about the right weight.” When parents are unwilling or unable to recognize their children’s true health status, it is up to primary care providers to refer children and their families for treatment. One program specifically targeting childhood obesity through family-centered solutions is the Duke Healthy Lifestyles Program. The Healthy Lifestyles Program relies on lifestyle modification with the help of dietary, medical, physical therapy, and behavioral providers. Each family receives personalized treatment options. Unlike with adult obesity, the treatment goal of childhood obesity is usually to stabilize rather than lose weight since children are actively growing. The Healthy Lifestyles Program not only involves medical professionals at Duke Pediatric Primary Care, but also partners with the Durham City Parks and Recreation Department. This unique model connects health care with community resources, which is needed to overcome some of the economic and environmental barriers to beneficial health behaviors. When standard interventions such as the Healthy Lifestyles Program are not effective in combatting obesity, pharmacological options need to be turned to. While there are many medications available for treating adult obesity, Orlistat is currently the only medication approved for treating childhood obesity by the Food and Drug Administration. Even with the personalization of medicine among youth and adults in treating obesity, doctors should examine further personalization among individuals, as Orlistat is less effective in children with type 2 diabetes.

Personalizing care in childhood obesity presents unique barriers because coordination between the child, the family, and the healthcare team is challenging to achieve. Moving towards a personalized, proactive, and participatory care model for children by involving a child’s family support system should be seriously considered in order to effectively combat not just childhood obesity, but also a multitude of chronic illnesses that often begin in childhood.

Wendy Ji is an intern for the Duke Center for Research on Personalized Health Care and a junior attending the University of North Carolina at Chapel Hill.

Health for Now and the Future: Personalized Health Planning in Prenatal Care

The United States has room for improvement in maternal and child health. Compared to other members of the Organization for Economic Co-operation and Development (OECD), the U.S. has high rates of infant mortality (7 per 1000 live births) and ranks second to last in overall child well-being. While indicators of health such as infant mortality, infant deaths, and preterm births all declined from 2000-2012, the US Department of Health and Human Services’ Office of Disease Promotion and Health Prevention recognized that a continued decline in all these indicators is necessary to meet 2020 goals. In addition to addressing larger social determinants of health within the U.S., taking a more proactive, preventative and participatory approach to prenatal care has potential to improve prenatal health.


As infant health is inextricably connected to maternal health, one of the key components of prenatal care is engagement of the mother in the management of her own health. In the U.S., diabetes, hypertension and obesity are common factors that contribute to pregnancy and birth complications, increased use of medical services and longer hospital stays after delivery. The personalized health planning model could better address these common chronic conditions by engaging mothers in health care decision making through a health self-assessment and shared goal setting process. It is an approach that equips providers to provide recommendations for the next steps in a patient’s care. The patient and provider set goals for the patient’s health that are SMART: specific, measurable, action oriented, realistic and timed to facilitate gradual steps towards improved health outcomes through lifestyle modification. Ideally, a mother’s pregnancy specific goals would be integrated with the primary care provider’s (PCP) health plan. Coordination and continuity of care between a prenatal provider and PCP is key for successful goal achievement and taking full advantage of a personalized health plan.

There is exciting work happening that utilizes this type of participatory and proactive approach to ameliorate birth-related health outcomes and enhance the prenatal health care experience for mothers. One well-documented example is CenteringPregnancy, a model of group pregnancy care from second trimester to birth based on “the belief that health care should be centered or focused on the individuals participating in the care experience at any given time.” In a Centering appointment, expecting mothers first have individual assessments with the provider and use self-assessment tools to practice self-care and prepare for the day’s group activity. During the group activity the provider facilitates discussion around a health topic using hands on activities and drawing from individual experiences and concerns. Several studies indicate that Centering programs may reduce emergency room visits and preterm births while increasing prenatal knowledge as compared to traditional care. Centering programs cover topics included in traditional prenatal care (such as breastfeeding, labor, delivery and infant care) and provide opportunities for the provider to address issues such as gestational diabetes and obesity through organic group discussion and workshops.

CenteringPregnancy is a great example because it incorporates elements like health self-assessments into a clinical model while actively engaging and empowering the patient to manage their health and the health of their child. However, the length of Centering appointments (90 to 120 minutes) and number of patients in each shared appointment may be unsuitable for expectant mothers short on time for appointments or who anticipate pregnancy complications. It is here that tailored health planning during pregnancy, coordinated with primary care and postnatal care, has the most potential for improving health outcomes.  Through personalized health planning’s systematic approach to patient-centered care, chronic conditions threatening a healthy pregnancy can be addressed early on by bringing meaningful, focused goal setting and enhanced patient-provider collaboration to prenatal care.

Sierra Reid is an intern for the Duke Center for Research on Personalized Health Care and a senior attending the University of North Carolina at Chapel Hill.

Tagged with: , , , ,

Combating Drug Addiction with Personalized Care

The addiction epidemic is a largely neglected public health crisis in the United States. A study conducted by The National Center for Addiction and Substance Abuse at Columbia University found that 40 million Americans over the age of 12 suffer from addiction to alcohol, nicotine, and illicit substances. This figure greatly overshadows the 27 million Americans with heart disease, the 26 million with diabetes, and the 19 million with cancer. So why is such a prevalent problem receiving such little attention?

The way the current U.S. health system treats addiction is partly to blame. Current treatment methods, when and if a patient receives treatment, are either inconclusively effective or generalized. A scientific consensus on the effectiveness of popular 12-step therapy programs such as Alcoholics Anonymous or Narcotics Anonymous has yet to be reached, with different studies finding the programs beneficial, neutral, or even detrimental to recovery. In addition to therapy, medical professionals recommend medication be used to help facilitate recovery. However over 90% of medications properly function in only 30% to 50% of patients. For example, though methadone is useful in managing adult addiction, it is not suitable for teens. In addition, it is even harder to find the right medication for each patient in addiction treatment due to patient relapse and adherence. Yet most doctors are still treating addiction with a one-size-fits all approach and prescribing popular medications without really considering the individual characteristics of the patient at hand.

Personalization of care could be the answer to getting America’s drug addiction under control. Screening, Brief Intervention, and Referral to Treatment (SBIRT) is a new approach developed by the government’s Substance Abuse and Mental Health Services Administration that serves as a resource for health care centers looking to deliver early intervention. This could have enormous effects in preventing the onset of addiction with the 80 million risky drug users currently in the United States. Personalized medicine, which is providing “the right drug for the right patient at the right time,” is currently being applied to more effectively treat addiction after it has already appeared in a patient. By matching specific medication to certain genes, addiction can be effectively combated on the first try. The question of whether an alcoholic would respond better to naltrexone, acamprosate, or disulfiram or whether an opiate addict would respond better to naltrexone, methadone, or buprenorphine could soon be answered with a low cost blood test. Finally, due to the chronic nature of drug addiction, “a short-term, one-time treatment is usually not sufficient.” Personalized health planning is a potential strategy to ensure treatment regimens are being followed, to engage patients in combatting drug addiction to improve their health, and to alert providers if a different treatment approach is needed.

Risky drug use and drug addiction costs the U.S. government over $468 billion annually. However, only 10% of individuals with drug addiction receive treatment and few health care providers know how to treat addiction. What is needed now is a logical new approach to managing addiction that is both patient-centered and cost effective. An emphasis on early prevention and tailored treatment options could not only save billions of dollars, but also millions of lives. As personalized approaches to care are refined, it is of the utmost importance to ensure addiction treatment does not get left behind.

Wendy Ji is an intern for the Duke Center for Research on Personalized Health Care and a junior attending the University of North Carolina at Chapel Hill.

Ralph Snyderman on the Progress of Personalized Medicine

Dr. Ralph Snyderman presents his thoughts on personalized medicine and its progress in the last 15 years in his guest blog post “Personalized Medicine: Then, Now and Coming Soon” on the Personalized Medicine Coalition’s blog, Education & Advocacy.

To read more, and learn the background behind Dr. Snyderman’s report card for personalized medicine progress (pictured below), click here.

Screen Shot 2015-12-03 at 10.11.01 AM


Providing for Our Protectors: Veterans and Preventive Health Care

More than two million Americans have served in the US military in Iraq and Afghanistan since October, 2001, the month after 9/11. The government has the duty to take care of its heroes once they return home, thus the Department of Veteran Affairs, or the VA, was born. Part of this responsibility falls into the realm of healthcare, where the Veterans Health Administration (VHA), the largest integrated health care system in the country, takes charge. Though one might suspect that the majority of care provided to veterans through the VHA is related to injuries sustained during combat, veterans also suffer from the burden of common, preventable chronic diseases at a higher rate than non-veterans.

In order to combat chronic disease, the VHA must develop strategies and allocate resources to prevention, which is a challenge since veterans return from service with other injuries and possibly developing or developed chronic illnesses. Prevention is difficult when it comes to veterans because the military does not screen enlisting soldiers for chronic disease, and veterans often return home with additional disabilities that complicate their care and often become their primary concern. As a result, the VHA has taken creative steps to ensure Vets receive the best possible preventive care.

In ensuring Vets are healthy and/or helping them become healthy, the VHA must work to prevent the manifestation of chronic diseases, while simultaneously treating other serious illnesses or disabilities that result from combat. In conjunction with its strategic plan, the VHA’s approach to preventive care for combat veterans is based on the standard model of population health management. In this model, there are three categorizations of prevention: primary, secondary, and tertiary. Primary prevention is when the Vet has no disease and no impairment, so the focus is wholly on prevention. Secondary prevention is when an impairment or disease has been detected; here, the prevention is targeted and aggressive. Tertiary prevention is done in conjunction with treatment for a diagnosed disease or impairment. Categorization is incredibly important for VHA efficiency and for patient centered care, allowing the patient to receive the best and most effective treatment and regimen for prevention.

Patient centered care is important to preventive care efforts because cases at the VHA are increasingly diverse due to the complex nature of combat-related disability (both physical and mental), and the diverse demographic that the VHA serves. In response to these needs and patient diversity, the VHA strives to “empower vets to improve their well-being” by using a recently released proactive health and wellbeing model. Through this integrative model developed by the Office of Patient Centered Care and Cultural Transformation, the VA is working to explore personalized, proactive, and patient-centered medicine. In addition, another program generated from within the VA that focuses on prevention is project MOVE!, a popular weight management health promotion program.

The VHA, in conjunction with partners, is working to implement personalized, proactive medicine and manage the increasingly diverse medical needs of Vets. The VHA’s refocus of its strategy to a patient centered approach is a much needed step towards managing and providing for patients as the department works to undergo an overhaul.

Rosie Wood is an intern for the Duke Center for Research on Personalized Health Care and a senior attending the University of North Carolina at Chapel Hill

Tagged with: , , , , , ,

What Happened at the PMC/BIO Solutions Summit?

On October 14th 2015, The PMC Biosolutions Summit brought together government representatives, pharmaceutical representatives, researchers, patients, providers and payers to discuss the adoption of personalized medicine within health care systems. Attendees explored how to increase utilization and understanding of personalized medicine, as well as barriers facing personalized medicine in the future.

Dr. Ralph Snyderman, Director of the Center for Research on Personalized Health Care, moderated a panel at the summit titled “Education Regarding Personalized Medicine Throughout the Continuum.” Below is a recap of this panel’s productive discussion.

The following article was originally posted on http://www.ajmc.com/newsroom/ensuring-education-for-stakeholders-of-personalized-medicine

“We have to rethink how we practice medicine because there’s a lot at stake,” was how Ralph Snyderman, MD, chancellor emeritus of Duke University, opened up a panel discussion at the PMC/BIO Solutions Summit held October 14, 2015, in Washington, DC. The panel, Education Regarding the Use of Personalized Medicine Throughout the Health Care Continuum, was set up to discuss widespread and appropriate education of personalized medicine (PM) among payers, providers, patients, and families.

Snyderman was joined by Wendy K. D. Selig, founder and CEO of WSCollaborative; Jane Binge, EdD, RN, senior research officer, Sutter Health; and Jeffry Ross, MD, medical director, Foundation Medicine. “We have far from fulfilled the original goals of PM,” Snyderman continued, emphasizing the need for additional patient involvement as well as that of their families. “The whole field of PM is about using disruptive technologies that renew our capabilities. Disruptive technology can be innovative when used to solve a problem,” he said, because together they can develop a new mode to practice medicine. A physician, in collaboration with the patient, could change the trajectory of disease using the PM approach, but it would require a novel approach to clinical practice, Snyderman explained.

Ross, who is chair of pathology at Albany Medical College, said that they are already bringing forth the change by “training our second year medical students and residents on molecular pathology so they are aware of the [monumental] changes in the field and can keep up with the direction in which the clinical field is rapidly moving.” Ross said that PM is exciting to him personally because he believes PM can provide patients much better treatment outcomes.

“We need to educate payers on new options and therapies and the value they bring to the patient and his outcomes,” Ross continued. “Payers need to be well aware of our strategy for off-label and off-target clinical data and we need to come back to the payers and inform them on any positive outcomes. But, most importantly, we need this to be the national approach,” Ross emphasized.

Selig said that they have had different experiences in the patient advocacy space, “but when we make strides in 1 disease area, it can also be applied to other therapeutic areas.” While several groups and organizations are on the frontline for educating both patients and providers, “the patient community is hungry for information to understand their disease, their available options, and ways to fight their condition. This provides a huge opportunity to decide where we want to go. The industry needs to tap the resources these patient organizations provide,” said Selig.

Selig explained that most cancer patients are treated in the community and that’s where the treatment gap comes in, because while awareness on medical information is much better in academic institutions, community oncologists lag a bit on that front. “We need to figure out ways to communicate and collaborate better to share the limited data that is available.” Another aspect that Selig raised was about data ownership, saying that is always a major concern for patients.

Snyderman pointed out the need to develop a core curriculum to understand what providers of care need to know to move the field of PM forward. “If we identify the constituencies that can play a major role in telling the story of PM,” everyone would benefit.

According to Ross, payer education can be challenging. “We are currently in a chaotic phase where some [payers] are on board some are planning to and some may never be. Some bigger payers are asking for more than just anecdotal data to be submitted—they want clinical trial information to help them understand these tests better and help them determine coverage.”

Tagged with: , , , ,

Mental Illness: Preventing the Brain Games

The Affordable Care Act incentivizes prevention, which is the process of identifying and remedying a disease before it occurs. With well-known diseases such as coronary artery disease, which costs the United States about $43 billion per year, there are well-established personalized, predictive, and preventive plans of action. We can identify risk factors for such diseases and have validated plans of action to prevent or slow disease onset.

For another extremely costly disease like schizophrenia, which costs $33 billion per year, preventive measures and diagnostic tests have lagged behind disorders of physical health; mental diseases are more complicated to predict and prevent. 7.9 million Americans suffer from schizophrenia and bipolar disorder. Therefore, the recent development of programs and research to detect mental illness early is a much-needed work in progress.

The Affordable Care Act has facilitated the development of such programs, for example the National Demonstration of Early Detection, Intervention and Prevention of Psychosis in Adolescents and Young Adults (EDIPPP). EDIPPP uses community interaction “including family members, teachers, social workers, doctors and nurses” to identify teens and young adults at risk A similar program, RAISE, is a research project funded by the National Institute of Mental Health that seeks to fundamentally change the trajectory and prognosis of schizophrenia through coordinated and aggressive treatment in the earliest stages of illness. The success of programs like EDIPPP and RAISE is in their prevention of psychosis early, before it becomes debilitating to the individual and a burden on the health system. In fact, the most economically effective treatments are related to early childhood development programs. A combination of genetics and environmental factors contribute to the development of psychiatric disorders in an individual. Programs such as EDIPPP work to detect the potential of a disorder and treat the environmental aspect of the issue using a patient centered approach.

Moreover, genetic testing is another innovation used to detect indicators of mental illness, which aids in early diagnosis and prevention. Unfortunately, no genetic test can predict definitively who will and who will not become mentally ill. However, certain tests can help in predicting the possibility and risk. Paired with a program such as EDIPPP, genetic testing and risk prediction models could prove invaluable in the future of mental illness prevention. Currently, genetic testing in the mental health field is most useful in predicting the likelihood of developing psychosis in a patient with a family history of mental illness.  Careful analysis of the last three generations of family psychiatric history is still the most useful tool in predicting risk or illness onset. Paired with a program such as EDIPPP, family history and genetic testing for risk prediction could prove invaluable in the future of mental illness prevention.

There is a better way to mitigate the costly burden of mental illness in the United States. Prevention allows individuals who would not have been in control of their lives and futures to take steps to live normal, healthy, lives. Environmental, patient centered, social programs such as RAISE and EDIPPP serve as the “ying” in treating and preventing mental illness while the “yang”, genetic research and validation of models for risk prediction, compliments these programs and gives those fighting mental illness another weapon in their arsenal. There is a clear path forward ahead for mental illness recognition, management and prevention as the battle against mental illness is coming into the spotlight.

Rosie Wood is an intern for the Duke Center for Research on Personalized Health Care and a senior attending the University of North Carolina at Chapel Hill


Tagged with: , , , , , , ,

An Engagement Regimen for Medication Adherence

Drug spending in the United States is astronomical, and Americans are noticing. According to a Kaiser Health Tracking Poll for August of 2015, while 62% of Americans concede that prescription drugs developed in the past 20 years have improved peoples’ lives, 72% of Americans feel that drug costs are unreasonable. Support for various efforts to lower drug prices crossed partisan lines. Tackling drug prices through legislative efforts, like allowing the federal government to negotiate with drug companies for drug prices for people on Medicare, is an effort supported by many Americans (Kaiser 2015). Yet, even with efforts to lower drug prices, drug spending in the United States still raises following question for prescribers: why put patients on highly expensive drug regimens if they are not going to adhere to their medication plan?

What is medication adherence? The term refers to whether a patient takes their prescribed drugs and follows their chosen treatment plan, and there is evidence that non-adherence is associated with poor health outcomes and higher cost of care. This is especially relevant for diseases like diabetes or gastrointestinal disorders; successful outcomes for both depend on adhering to the full course of a prescribed drug regimen in addition to self-management of lifestyle aggravators such as stress. Not surprisingly, drugs for both heartburn and diabetes showed up in the list of top ten drugs that Medicare pays for in its Part D prescription program.

Lack of adherence is certainly not the only factor driving up drug prices (though pharma-funded adherence advocacy organizations certainly would like us to think so), but addressing the issue of non-adherence is still a valuable cause. According to this blog post, major strategies for making the most of expensive medications through adherence should focus on patient engagement, taking a longer view of the patient, and greater pharmaceutical manufacturer involvement in personalized medication management programs. The bottom line is that medication non-adherence wastes expensive drugs and puts people in danger of poor health outcomes, which in turn increases cost of care. We cannot ignore the link between medication adherence, drug spending, and quality of care.

So how do we achieve medication adherence? Within the movement toward more personalized forms of health care delivery, an ever-growing number of initiatives are searching for ways to increase positive self-management behaviors and health self-efficacy. As highlighted above, patient engagement is one of, if not the most important strategy for addressing drug adherence behavior. Patient engagement itself has been deemed a “blockbuster drug”, so using it as a conceptual framework for linking self-efficacy and health behavior with prescription drug adherence seems fitting. The theoretical connection between the two seems valid; more engaged patients should be more involved in their care, understand their treatment regimen, and follow through with it. Pharmaceutical companies recognize the importance of this issue, as evidenced by efforts to connect engagement with adherence in upcoming conferences and summits nationwide.

If patient engagement is the fix, what do current strategies for improving patient engagement as it relates to medication adherence look like? While industry focuses on medication adherence programs, like this suite of resources from McKesson, healthcare researchers have focused on fostering patient-centered care, developing shared decision making, self-management programs, or continued engagement support through mobile health platforms. Others, like the Altarum Institute and OptumHealth, are using patient engagement as a potential predictor variable for future (non)adherence.

The Center for Research on Personalized HealthCare is conducting research on a model of care with the flexibility to combine many of the above strategies in both primary care and group settings. Personalized Health Planning combines patient-centered care with shared decision-making and mechanisms to support long-term self-management of multiple disease states. The process engages patients in all aspects of their care, and therefore has the potential to make an impact in the realm of medication adherence.

Though special interest groups have a part to play in highlighting adherence and its relation to the medication pricing and cost of care issues facing the US, their self-serving motivations should not deter researchers from addressing the problem. Medication adherence is inextricably linked to efforts for creating more personalized, proactive forms of care.

Tagged with: , ,

Ambulance Diversions and ER Overcrowding: Could Primary Prevention Be The Solution?


You hear the sirens and pull over as the ambulance speeds by, knowing that in some small way you just helped save a life.

But is that really the case? The delivery of a patient into emergency care does not guarantee a positive outcome, but it is an essential step. The timeliness of an ambulance arrival to the emergency room or emergency department (ED) is critical when the difference between life and death can be a matter of seconds. Overcrowding is a problem that EDs have been struggling with for quite some time and it is also the reason why the ambulance buzzing by you on the highway may not arrive where it was originally intended.

To manage overcrowding, EDs commonly divert incoming ambulances. This means that the ED is temporarily closed to incoming ambulance traffic. Now before anyone goes and grabs their pitchfork, there is a reason behind this closure. Overcrowding can cause delays for patients who await treatment so diversion to the next nearest hospital is a logical solution. However, diversion of ambulances can create an overcrowding problem at the next hospital too. When this happens, patients in critical condition have even more increased wait times, and the second (or third) hospital may not have the appropriate technology. This is especially a concern with heart attack victims.

A recent study done in California determined that “patients whose nearest hospital ED had significant ambulance diversions experienced reduced access to hospitals with cardiac technology,” which led to a 4.6 percent decreased likelihood of revascularization and a 9.8 percent increase in one-year mortality compared to patients who did not experience diversion. For those of you following along, this could mean that people in cardiac arrest are more likely to die because of a diversion!

Overcrowding is a key factor in ambulance diversion. Although policymakers are working to reorganize the system and make it more efficient, while others such as Dr. Marc Futernick think that hospitals should simply stop diverting despite overcrowding, another solution can be an increased focus on prevention to tackle the problem before it begins. The Affordable Care Act provides incentives for the prevention of chronic diseases by “improving access to preventive services for eligible adults in Medicaid”. Through the ACA, preventative measures and screenings are available at no cost in order to improve long term health. The key to prevention is that it improves healthcare outcomes by addressing the problem before it becomes so serious that it requires hospitalization and the use of ambulances. In 2013 there were 359,400 incidents of out-of-hospital cardiac arrest. With a 9.5% survival rate, individuals with future risk of a cardiac episode need to take their health seriously. Their health influences not only themselves and their family but also the patients who visit emergency departments for non-preventable health issues and may not receive treatment due to overcrowding from preventable cases.
ER overcrowding and disease prevention are linked. When you take that step to save another’s life by pulling over to let an ambulance pass, take a step to save your own and ask your provider about preventive care.


Rosie Wood is a senior at the University of North Carolina at Chapel Hill and an intern at Duke’s Center for Research on Personalized Health Care


Let’s Make Decision Aids More Personal

Shared decision making is a popular concept in the world of patient engagement and personalized health care. It involves a collaborative conversation between patient and provider which allows the patient to make informed treatment decisions based on their needs, desires, and options for care given to them by their provider. The ACA provided avenues for development of decision aids to promote shared decision making as a delivery system reform. For example, shared decision making is one of the delivery improvement models that could satisfy the objectives of research supported by the Center for Medicare and Medicaid Innovation, so we will continue to see research in development of aids to help patients make better treatment choices.

Current research in shared decision making as a healthcare delivery model centers around development of decision aids like the one in the video below, created by Mayo Clinic’s Shared Decision Making National Research Center

While these decision aids are successful in presenting patients with their options for care in an understandable way, which is both important and necessary, they do not do enough to foster the kind of conversation that can lead to a truly effective shared decision based on patient priorities and centered on wellness.

Reference guide materials for providers on shared decision making do a good job of emphasizing that providers should take into account their patient’s values and preferences, as evidenced by Step 3 in AHRQ’s Quick Reference Guide to the SHARE approach for shared decision making, pictured below:

Screen Shot 2015-08-13 at 2.02.46 PM

Retrieved from: http://www.ahrq.gov/professionals/education/curriculum-tools/shareddecisionmaking/tools/tool-1/index.html

Yet the decision aids themselves are lacking in components to facilitate this kind of discussion or engage the patient in this kind of thinking. By only letting the patient choose from a number of clearly defined options for care, current versions of decision aids miss out on an opportunity to present treatment plans in a way that encourages wellness and connects directly to the patient’s life and lifestyle.

As health systems begin to adopt shared decision making as a part of new delivery models with the goal of controlling cost and increasing patient engagement, they should recognize the potential value in developing more personalized decision aids. Decision aids should do more to connect the patient’s lifestyle priorities with their options for care, engaging the patient in consideration of their values. For example, a decision aid about diabetes treatment options should not only explain the differences between diabetes medications, but also explore how differences in these medications may affect aspects of the patient’s life that are important to them. Especially when it comes to chronic disease management, a decision aid should take into account the ongoing journey of care involved in making treatment or medication decisions.

Because this kind of health decision-making is new to both patients and providers, conversations where the patient’s values are fully expressed and understood are difficult to facilitate, which is why research should pay attention to the kinds of conversations that accompany use of a decision aid. Aids that simply provide comparisons of treatment options may bring about informed decision-making, but this does not ensure that it will be truly shared decision making, or that the resulting decisions made will be relevant and personal to the patient. In a healthcare landscape that emphasizes personalized medicine and care, decision aids shouldn’t feel so impersonal.

Tagged with: , ,