Insights: Prevention

The original Diabetes Prevention Program (DPP) study, and the various studies that have replicated and aimed to translate it, has made it clear: prevention of type 2 diabetes, or at least the delay of its onset, is possible in people with prediabetes through lifestyle change. We repeatedly heard the refrains that the DPP showed prevention is “not rocket science” and “not magic.” We know exactly what it takes. A weight loss of as little as 5%-7% (although 10% or more may be ideal), in conjunction with 150 minutes per week of physical activity, can significantly reduce the progression of prediabetes to diabetes. The evidence is considered sufficiently conclusive that the Centers for Medicare & Medicaid Services (CMS) declared that DPP programs have a full return on investment within four years, and it announced it would start reimbursing for approved DPP involvement in 2018, the ultimate seal of approval.

As much as the DPP forms the foundation of many current diabetes prevention efforts, we heard two main arguments against it as the long-term solution to type 2 diabetes prevention. First, while many claim that the DPP’s model for prevention is neither “magic” nor “rocket science,” numerous others reminded us that it can seem almost that difficult, at least when attempted at large scale. After all, if we truly knew how to get people to achieve and sustain weight loss and be more physically active, we would be doing it already. We may know what it takes to delay or prevent progression of prediabetes to type 2 diabetes, but we are still uncertain regarding how to help people get there in an affordable, scalable way. Even Dr. David Marrero, a lead investigator on the original DPP study, as well as a leader of the translation efforts that led to the YMCA DPP, said, “We’ve so far tried to fit everyone to one or two models,” and that just doesn’t work. Dr. W. Timothy Garvey, Chair of the Department of Nutrition Sciences at the University of Alabama – Birmingham notes that the shortcomings of a one-size-fits-all are, “not surprising when you consider that obesity is a disease, and there are multiple pathophysiological mechanisms that patients must fight against to prevent weight regain following lifestyle interventions.”

The second, perhaps more persuasive argument against the DPP is that it fundamentally fails to address health at the population level. While the DPP may be effective in preventing diabetes among those already at high risk, it does little to address the broad factors underlying the high prediabetes prevalence in the first place. Prof. Paul Zimmet, who helped author the Australian National Diabetes Strategy, said, “We need to look 30 or 40 years down the track at the people who are going to get diabetes.” In this sense, the DPP, while crucial to those already at high risk, is little more than a Band-Aid solution at the population level; to truly address the rapidly growing diabetes epidemic, we need to address social determinants of health. This means changing our food systems, our norms, our education, our living spaces, and much more.

A prevention effort is only as good as its ability to attract people’s participation. The most successful programs use marketing strategies and gain attention in media, including social media. We were introduced more broadly to the concept of “social marketing”—using marketing strategies to influence social behaviors, rather than consumer behaviors. And people expressed the need for marketing at many levels. Several argued that produce should be better advertised in grocery stores. Prof. Philip Home of Newcastle University, UK, argued that some of the greatest inroads can be made through cultural avenues like celebrity chefs and women’s magazines. Dr. Marrero said that regulation alone is useless in the absence of accepting social change. He said, “I think you have to attack beliefs. I think you have to attack the cultural acceptance of certain things.”

Social media is an increasingly important tool for reaching and engaging people as well— its importance was voiced numerous times in our research and conversations. Dr. Deborah Greenwood, President of Deborah Greenwood Consulting and 2015 President of the American Association of Diabetes Educators (AADE), argued that the ability to engage patient populations with social media should be “a requirement of the job,” especially in prediabetes and type 2 diabetes, where stigma can be such a profound barrier to engagement.

Overall, we heard that it is important to leverage all forms media to build positive attention. Some of the most effective programs are able to do their marketing largely for free, simply by knowing how to raise excitement in a way that brings media coverage. Media coverage is particularly important in influencing the perception of any intervention: Is the effort on your side? Is it trying to support you or control you? One of the most informative examples comes from tobacco, where the key to reducing the prevalence of smoking was ultimately creating a social perception of the tobacco industry as the “bad guy” and cessation efforts as people’s ally.

Dr. William Polonsky, of the Behavioral Diabetes Institute, raised the concept ofattributional bias. When others don’t meet their goals, we tend to use personal factors or shortcomings, such as lack of motivation, as the explanation; when we don’t meet our own goals, we attribute it to situational factors like stress or limited time. Beyond contributing to the stigma of prediabetes, obesity, and type 2 diabetes, this bias leads us to focus prevention efforts on individual engagement and motivation, rather than environmental and social determinants of health. “The people who are going to solve the diabetes epidemic in America,” Dr. Polonsky said, “are going to be our urban designers.” While it may be an overstatement to expect just one sort of intervention to solve an epidemic, changes in our environment certainly encourage health without forcing people to make deliberate, active, and motivated decisions. Many others echoed the sentiment that the long-term solution can only lie in shifting social and environmental factors to the point where healthy decisions are the default, rather than the exception.

In fact, we are often wrong to even assume that health itself will be the primary motivating factor in any decision. People often face far more salient motivators than health—saving money and balancing a budget, feeding a family, advancing a career or maintaining multiple jobs, caring for loved ones, sustaining social ties, upholding cultural norms and traditions, avoiding embarrassment, avoiding wasting money, even avoiding deportation—any one of these factors, and many more, can lead a person to make reasonable, rational decisions that they know are not best for their physical health. People may know that vegetables are healthy, for example, but aren’t ready to risk losing money if they spoil or if their family doesn’t like them. Nutrition and health education are crucial but are insufficient on their own. Said Rita Nguyen, Director of Chronic Disease Prevention for the City and County of San Francisco, “We don’t do enough to actually enable behavior change.” We are too focused on teaching people what is healthy, and often neglect the need to learn how to make health part of daily life. Said Sarah Nelson, executive director of 18 Reasons, which administers the Cooking Matters program in San Francisco, “The nutrition-education complex is dominated by dieticians…It should be dominated by chefs.”

By far the most frequently cited barrier to healthy decisions was money. People will prioritize their ability to make ends meet and feed their family over almost anything else, and we would be wrong to believe that people would act against this interest. Certainly, some health behaviors cost little or nothing extra, and for these, other barriers may be more significant. But to prevent type 2 diabetes, particularly in a way that reduces health disparities, we need to ensure that a wide variety of interventions are financially feasible, and even beneficial, even in the short term.

Motivation is a major obstacle and, to some extent, a mystery for prevention. It is natural to lament low engagement rates in prevention programs. In large part, motivation and engagement remain the missing links between knowing what prevents type 2 diabetes and how to employ this knowledge. While environmental change is certainly a major part of influencing how people make decisions, we also need to learn how individual motivations work. We heard, several times, that money can be an ideal incentive—we ought to be paying people who work to stay healthy. Others question this practice and argue that we need to be far more nuanced in how we look at incentives. We spoke to Dr. Martha Nelson, of the National Institutes of Health, about the importance of behavioral economics in prevention efforts. Said Dr. Nelson, “Certainly it’s not sustainable to constantly pay someone to engage in a certain behavior,” but such an incentive can be useful in overcoming an “initial resistance.” In many cases, she noted, “You’re trying to melt away perceived barriers that aren’t really there.” Lifestyle change can only be sustained, let alone implemented, if these barriers are surmounted. Other experts spoke about motivation entirely outside of incentives and rewards. Dr. Robert Vigersky, Medical Director for Medtronic Diabetes and Past-President of the Endocrine Society, talked about how rapidly patients begin to implement lifestyle changes after seeing their own data from continuous glucose monitoring (CGM). Simply being able to visualize what’s happening in your body can increase your understanding of how your decisions affect your health.

One of the crucial insights of the DPP study was that even minor weight loss, equivalent to 5%–7% of body weight, makes a significant difference. Yet there remains a prevailing assumption that only major weight loss can lead to improved health, and the perceived difficulty of losing huge amounts of weight can prevent people from attempting less drastic lifestyle change. “People are still struggling under catastrophic weight loss models,” Dr. Marrero said. “It’s kind of a learned helplessness model.” However, Dr. Scott Isaacs, Medical Director of Atlanta Endocrine Associates, cautioned us not to take the 5%–7% rule from the DPP study as gospel—that amount of weight loss is sufficient for significant diabetes prevention, but greater weight loss may have even more substantial benefits, both for diabetes and other conditions associated with being overweight and obesity. In addition, the DPP made clear that other lifestyle factors beyond just weight are also important in preventing or delaying diabetes.

Many experts spoke to the importance of using scientific understanding for better risk stratification. R. Keith Campbell, Professor Emeritus of Pharmacotherapy at Washington State University, spoke about the potential of genetic screening for diabetes susceptibility. Paul Zimmet, Professor of Diabetes at Monash University in Australia, and others spoke on the importance of epigenetics, or impacts of the prenatal environment on DNA. We also heard, at the 9th World Congress on the Prevention of Diabetes and its Complications, that we need to refine and strengthen our definition of prediabetes. After all, some people with prediabetes will never progress to type 2 diabetes, and we aren’t very good at predicting who will. More research needs to be done into the predictive efficacy of the various diagnostic tests for prediabetes, the applications of genetics to this process, and much more.

Prof. Zimmet also reminded us, however, that population-level prevention strategies are incomplete if they don’t also address lower-risk groups. He estimated that about half of type 2 diabetes cases come from populations that we consider to be at high-risk, while the other half comes from the general population. A comprehensive prevention effort needs both a community health component and a component specifically for those at the highest risk.

During our conversations, we asked people about their “dream” prevention program. In response, experts in a wide variety of fields consistently spoke about the need to focus on children, infants, and even prenatal factors. Numerous times, we were reminded that ultimately, the goal is not just to change the behavior of high-risk adults, but to raise children to have a lifetime of healthy behaviors. This is not to say that multigenerational involvement is not critical, but rather to point out that the only way to achieve and sustain population-level prevention is to consider future generations.

“Starting early” has multiple definitions. As Prof. Zimmet noted, “Governments aren’t paying enough attention to maternal and child health.” At the very least, the information that is collected is rarely applied to chronic disease prevention. Many others voiced the need to pay more attention to epigenetics, gestational diabetes, and other prenatal and infant factors. Many talked about the importance of nutritional and physical activity education for children, in the form of such things as school gardening, home economics and cooking classes in schools, physical education classes, health and nutritional education, and more. Others talked more broadly still about involving youth as leaders in prevention efforts to increase engagement and excitement. Youth buy-in and leadership are essential to sustain any youth-centered intervention—if kids aren’t interested it won’t stick. Dr. Paul Bloch, Senior Researcher and Team Leader at Steno Diabetes Center in Copenhagen, shared the story of a Danish project that asked teens to design neighborhood planning improvements using their skills with games like Minecraft and Lego. The effort led to successful neighborhood improvements and increased mutual respect between city planners and local youth.

One of the great barriers to motivating those with prediabetes is that most people don’t feel any symptoms, and thus there is little urgency around the condition. One way of increasing urgency is by working to frame prediabetes more clearly as a legitimate medical condition. Lucia Novak, Director of the Riverside Diabetes Center at Riverside Medical Associates (Riverdale, MD) and Adjunct Assistant Professor, Uniformed Services University of the Health Sciences, suggested that prediabetes “probably should be called stage one diabetes.” Prof. Campbell agreed, noting, “I am a big believer in treating pre-diabetes as if it’s a diagnosis of type 2 diabetes.” Being able to visualize the physiological changes involved in prediabetes, even if you can’t feel them, might also increase the urgency. Said Dr. Vigersky, who is interested in the use of CGM to motivate behavior change, “The concept of glucose, let alone A1c, is so foreign [to people with prediabetes] . . . But if you show them a picture of what is actually happening [after a meal, etc.] . . . they could see some relationship. They could get an understanding in the simplest terms.”

Beyond a sense of urgency, basic awareness of prediabetes is also lacking. The condition is significantly underdiagnosed, and many patients don’t even get screened. In fact, 1 in 3 American adults, or a total of 84 million Americans, have prediabetes, but only an estimated 1 in 10 of those people are diagnosed.^[i] Michael Warburg, managing director at Warbros LLC, said that few people know their prediabetes risk in the same way that they would be likely to know, say, their cholesterol number. He said, “I’d like to see A1c as part of everyone’s personal dashboard,” one that is screened for as standard practice and that holds the same prominence in people’s sense of their own health as cholesterol or BMI.

^[i] https://doihaveprediabetes.org/spread-the-word.html

Ms. Novak, despite expressing that we might consider thinking of prediabetes as “stage one diabetes,” urged caution in forcing people into an overly “medical” sense of their health. She pointed out that interaction with medical professionals can carry stigma in prediabetes and diabetes. Such stigma can be reduced in DPPs and other prevention programs that are not run by medical professionals, as the people who facilitate them may be considered more approachable. Others added that requiring medical professionals to lead prevention programs can drive up costs and limit access. Dr. Vigersky may have phrased the perils of over-medicalization best when he said that people “naturally avoid medicalization of their lives.” Especially with something like prediabetes, if we don’t feel it—if it doesn’t hurt—then we are unlikely to naturally want to address the issue with the attention that an illness can demand.

Interventions are often most effective when addressing social networks rather than individuals alone. Friends and family will likely have a far more personal interest in an individual’s health than a healthcare provider will. Dr. Steven Edelman, Professor of Medicine at the University of California, San Diego, and founder of Take Control of Your Diabetes, said that the best awareness campaigns often involve first-degree relatives: “Have you told your brother that he’s at risk? Your son, your daughter?” Friends and family can also be powerful sources of motivation, of shared goal-setting, and of maintenance through periods of stress. Said Varun Iyengar, a medical student at Brown University, “I can have the resources to go to the gym, and the time to go to the gym, but if I have a friend who’s motivating me to go there, then I’m much more likely to end up going.” Dr. Polonsky said that many of the most powerful social influences aren’t even active or deliberate. Even just spending time with people who are active makes you more likely to be active, simply because of the nature of social pressure.

Peer educators also represent a powerful way to increase the reach of prevention efforts. Well-informed educators can promote lifestyle change even outside of formal settings, such as by encouraging and teaching friends or colleagues. Peer education’s greatest power, however, may be in reaching typically disadvantaged communities, across barriers of race, language, religion, socioeconomic status, etc. People are often more eager to engage with educators who understand and share their background or current circumstances. Peer educators need to be put into action, though; training alone is not enough. Said Ms. Nelson of 18 Reasons, “A lot of time non-profits train peer educators, but then they don’t have anything for them to do.”

Many of the people with whom we spoke, especially those involved in hospital-based medicine, argued that we need to better integrate prevention into primary care. Increasing access to primary care, rather than disease-specific interventions, is potentially a more effective, and cost-effective, strategy. However, primary care professionals need to increase their focus on prevention as well— risk stratification and prediabetes screening will be most effective and widespread if they are better integrated into the primary care models that so many people already access. Primary care is currently limited by a lack of both time and incentives to engage in prevention. Part of the necessary change involves improving medical education to be more aware of obesity, prediabetes, and diabetes more generally. For example, Jessica Dong, a medical student at the University of Pennsylvania who has been active in trying to modernize medical school curricula, said that clinicians need increased training in how to avoid stigmatizing patients when addressing topics like obesity and lifestyle change. Part of the necessary change also involves enabling primary care providers to devote time to prevention, and to be reimbursed for doing so.

Dr. Brendan Milliner, a Resident Physician in emergency medicine at Mt. Sinai in New York City, said, “Lack of continuity is probably the biggest single factor that leads people to us [in the emergency department].” When people’s care is segmented and disrupted, it becomes substantially harder to address the increasing risk factors and red flags that precede type 2 diabetes and its subsequent complications. Discontinuous care also limits opportunities for risk stratification. For example, gestational diabetes is a known risk factor for type 2 diabetes, yet mothers generally see their obstetricians at most once or twice after delivery. The prevention opportunity presented in this piece of medical knowledge can be lost in the segmented communications between the obstetrician and an individual’s future clinicians. Highly segmented care partly reflects the tendency of medical education toward specialization.

In much the same way that we repeatedly heard that we cannot expect people to act against their financial interests, we were also regularly reminded that people are unlikely to make changes perceived as inconvenient or disruptive to daily life. Dr. Polonsky said that people will rarely lower their other priorities, so we need to focus on health in ways that don’t come at the expense of other things people value. Many said the secret lies in repetition—reminding and reaching out to people often enough to make attention to health unavoidable, while still limiting the message predictability that could lead people to tune out these messages.

We were also frequently reminded that the best interventions reach people in the places and routines of their daily lives: go to people instead of asking them to come to you. This need is closely tied to the importance of environmental change. Prevention efforts need to take place in schools, community centers, workplaces, social groups, city streets, and the other places where people spend the majority of their time, not just in the hospitals and medical centers that most people only occasionally visit. In particular, any added steps that are expected of individuals, especially extra medical appointments, will almost certainly serve as a barrier to engagement. The most effective screening, education, and motivation are integrated into the existing structures of daily life and normal care that people receive. This is especially important given that, as noted earlier, prediabetes is not “felt” in a physical way. The key thus lies in convenience and even desirability. Dr. Darin Olson, Assistant Professor of Medicine in the Division of Endocrinology, Metabolism, and Lipids at Emory University School of Medicine, said that the health innovator’s role is in finding what people want that simultaneously makes them healthier.

The other, often less talked-about insight of the original DPP study was that metformin alone showed significant reduction in the progression of prediabetes to type 2 diabetes. While many experts argue that lifestyle intervention should be the first step in any case and that dietary change and physical activity are feasible, we should be thinking more about the possibility of metformin, and other potential therapies for diseases like obesity, as a preventive backup or alternative in those cases where lifestyle interventions fail or make less sense. Among other things, metformin is also relatively “dirt cheap,” to borrow a phrase from Dr. Nick Wilkie, Resident Physician in Emergency Medicine at University of Wisconsin, Madison.

The major challenge, of course, is that metformin is not currently indicated for prevention, so only limited data exist on how, when, and for whom it is best used as a preventive intervention. Professor Kamlesh Khunti, Professor of Primary Care Diabetes and Vascular Medicine at the University of Leicester, UK, said that there might be great value in research that examines who is more likely to benefit from lifestyle interventions versus metformin, as patients could be directed to the most effective strategy earlier.

The other, often less talked-about insight of the original DPP study was that metformin alone showed significant reduction in the progression of prediabetes to type 2 diabetes. While many experts argue that lifestyle intervention should be the first step in any case and that dietary change and physical activity are feasible, we should be thinking more about the possibility of metformin, and other potential therapies for diseases like obesity, as a preventive backup or alternative in those cases where lifestyle interventions fail or make less sense. Among other things, metformin is also relatively “dirt cheap,” to borrow a phrase from Dr. Nick Wilkie, Resident Physician in Emergency Medicine at University of Wisconsin, Madison.

The major challenge, of course, is that metformin is not currently indicated for prevention, so only limited data exist on how, when, and for whom it is best used as a preventive intervention. Professor Kamlesh Khunti, Professor of Primary Care Diabetes and Vascular Medicine at the University of Leicester, UK, said that there might be great value in research that examines who is more likely to benefit from lifestyle interventions versus metformin, as patients could be directed to the most effective strategy earlier.

Many of the programs we have highlighted in this Anthology effectively employ partnerships rather than trying to implement change on their own. Likewise, many of the people we spoke to, especially those who have been in community-, state-, or national- level prevention efforts, emphasized the importance of partnerships. Many of the important partnerships involve the locations and institutions with which people engage on a daily basis—schools, offices, parks and city streets, restaurants, grocery stores, and so forth. Grocery stores and other places where people purchase food, such as convenience stores, were frequently mentioned. Retail food outlets are, after all, the primary location in which food purchasing decisions are made. The advertising, layout, and selection of grocery stores are thus a primary mediator of our eating, and stores represent a valuable target for both environmental change and education. Several experts also spoke about grocery stores as a setting to deliver nutrition education in a practical, engaging, even game-like way.

Interestingly, two potential partners that are cited as being most challenging collaborators were medical centers and governments. Unlike workplaces, schools, and grocery stores, most people rarely visit hospitals or other clinical settings. Thus, medical facilities are less likely to be the place where behavior change, or even sustained education, can take place. Hospitals do still have potential to be valuable partners, however. Dr. Bloch said that the key to involving hospitals in prevention is by making them places of health, not just of illness.

Governments, while potentially quite important as an ally, can also be challenging to work with. One major challenge was politics, and particularly political turnover rates, which can often be the enemy of sustainability. Prevention is a long-term process, and the benefits are not necessarily seen within the time-frame of an election cycle, meaning that it is hard to encourage elected officials to prioritize prevention. Additionally, political shifts can lead to abrupt changes or cuts to programs and their funding. Of course, governments can also be among the most powerful allies in prevention efforts, especially in their ability to regulate and coordinate at scale.

Randomized Control Trials, while considered the “gold standard” of research, are exceedingly difficult to employ for prevention efforts, especially in those focused on real-world implementation. Randomization is unfeasible, if not impossible, in almost any community-level prevention effort. Time-scale is often a challenge as well, as trials are often limited to months, while prevention is more relevant over the course of years. Two alternative research models were emphasized. Several experts, including Dr. Marrero, spoke about the value of Community-Based Participatory Research, in which the community leads the process of defining research questions, goals, interventions, and more. Additionally, Dr. Bloch spoke about the need for “realistic evaluation approaches,” which aim to measure real-world efficacy and impact, to gain more credibility in the world of research regarding prevention and social interventions.

Additionally, the traditional research paradigm often leads to a critical gap between academia and real-world-implementation for prevention efforts. Collaboration among academics, entrepreneurs, and program specialists or community organizers are rare, underfunded, and unlikely to garner much interest or prestige for either party involved. Finally, research tends to look at aggregates, but for prevention research in individuals, there may be just as much, or more, to learn by examining the outliers. Dr. Polonsky drew attention to the Look AHEAD trial, which in aggregate was deemed to be an ineffective intervention. Yet Dr. Polonsky noted that a small subset of participants saw substantial and sustained weight loss. He emphasized the need to examine what, exactly, sets apart these super-performers, as well as those in other interventions.

We heard about numerous ways in which money itself would be valuable for both research and implementation. Funding could be used to increase access to everything from fresh produce to DPPs. It could be used to increase collaborations between academic institutions and communities and to fund more broadly the work of translating research from academia to real-world settings. Money even shapes the creation of new programs, as the promise of reimbursement makes the DPP model an appealing, and potentially limiting, basis for innovation. In addition, while prevention has powerful potential for long-term returns on investment, there are often major up-front costs. The time-frame for breaking even is often longer than an election cycle or the standard turnover time between insurance providers, meaning there is little incentive for those who control much of the funding to invest in prevention. However, while funding is valuable, money itself isn’t the key to prevention. We can’t simply “throw money at the problem.” The money needs to be used to determine how to best implement prevention measures and then to make these possibilities a reality. This means funding the entire process: research, design, planning, implementation, innovation, evaluation, improvement, scaling, replication, and everything in between.

The single most common thing that we heard was that prevention is challenging but critically important. As one expert put it, we have been “humbled in the face of the challenges posed by prevention.” Yet people spoke with equal admiration about those they saw working on prevention. People consistently spoke about the importance of those approaching the problem in different ways. We heard:

• prevention specialists emphasize the importance of behavioral economics
• behavioral specialists emphasize academic research
• academic researchers emphasize translation and implementation
• program implementers emphasize cultural awareness
• cultural experts emphasize food systems
• food system interventionists emphasize education
• educators emphasize community leadership
• community organizers emphasize hospitals
• hospital clinicians emphasize prevention specialists

Simply put, no one specialty alone can solve this problem. We are hardly the first to suggest that the silo-ing of specialties is a barrier to health; that fact was a central motivation for this Anthology. We hope, however, that this will be the most important insight from this entire exploration of prevention: People from many sectors are ready, and eager, to collaborate around this goal. We must strive to make these collaborations possible, powerful, and lasting.