It can be really difficult for us to hear bad news, especially when the bad news is about something serious like our health.
In some of our recent research about the conversation between doctors and patients with chronic conditions, we asked patients to share how their doctor communicated the diagnosis to them, and how they as the patient felt hearing the news.
We found that, even though patients are often upset when finding out they have a condition like Multiple Sclerosis, there are things that the doctor does or doesn’t do that can positively or negatively impact the patient moving forward.
First, we found that patients want and need the whole truth about their condition. Doctors may sometimes think they’re helping by watering down the information or not talking too much about details of the condition, when in reality the patients need this information to gain clarity, familiarity, and to successfully move forward to starting treatment.
We also found that, while it’s very important for the doctors to give the patients a detailed and complete diagnosis, doctors should also make sure to leave enough time during the conversation to talk about treatment options. If the patient hears just that they’ve been diagnosed with Leukemia but doesn’t hear what treatment options are available, they could be left without much confidence or hope in being able to treat their condition.
Lastly, we found that the first few sentences of the conversation communicating bad news, like a diagnosis, matter a lot. In several instances patients described how the doctor didn’t communicate the beginning of the diagnosis well, saying things like “you have an aggressive cancer” or “I’m so sorry”. In these cases, the patient tended to not hear and really process the rest of the conversation. Things like poor word choice or the wrong demeanor can impact patients negatively in a way that lasts far beyond the diagnosis.
No patient wants to hear bad news. But when bad news needs to be communicated, it helps the patient immensely when they hear the whole truth, all about their treatment options, and are met with words and demeanor that give them as much confidence and hope as possible.(Read full post)
According to a report just released by the Center for Health Law and Policy Innovation of Harvard Law School, people with type 2 diabetes could lose up to 15 years of life because of the disease, and by 2025, diabetes could cost the state over $17 billion a year in medical expenses and lost productivity if the epidemic continues on its current path. Changing this is not simple, but there are many initiatives underway focused on making sure this does not become a reality.
This was the topic of the PATHS (Providing Access to Healthy Solutions) conference I attended on May 30. The good news is that there are many people who care about this issue and want to do something about it. The hard part, at times, is knowing where to start and how to actually make a difference.
While at the conference, I had the pleasure of sharing our work on women and diabetes along with Brandy Barnes of DiabetesSisters, as you see in the image below. I’ve been collaborating with Brandy for the last 5 years, and she has been able to take insights from our study to help inform the programs she offers through her organization.
I also had the opportunity to share some information about MicroMass’s Time2Focus diabetes app with some other conference attendees. As I wrote on April 22, 2014 in a previous blog post, this app is designed to help build patient confidence and problem solving skills so patients can make educated and empowered decisions on a day-to-day basis related to their diabetes. Recruitment for our clinical trial is underway, and we are eager to begin helping patients, one-by-one, make changes in their lives so they can live healthier, more productive lives.(Read full post)
Managing diabetes is complicated. You need a base understanding of what the disease is doing inside your body – how it behaves, what keeps it in check, and what it can do to you. Without this, you wouldn’t even know where to begin (or why you should want to manage it). You also have to be motivated. You have to believe management is within your control. Otherwise, what’s the point in even trying? You have to realize there are things you can do – however small – that can impact how it behaves. Lastly, you have to know what to do. You need to learn the skills to be able to manage it. You need to believe you can actually do it.
You might be asking yourself how people with diabetes get along with the disease. How do they manage the day-to-day demands placed on them? How do they make decisions that will help them be as healthy as possible? And the answer is that some people do manage the disease every day, taking it into consideration as they make choices for themselves. But others may deliberately ignore it, or may not even realize it’s something that requires their attention.
We know that close to 95% of diabetes management falls on the shoulders of patients, and we wanted to figure out a way to reach them where they are. Daily challenges come up that are difficult to manage. By building patients’ skills, we can help them take the actions necessary to most optimally manage their disease.
Patients are constantly on the go, so providing them with something that would not only accomplish the above disease management goals but also fit into a busy lifestyle was critical. Creating an app was the logical choice. When we looked at apps currently available, what we found were a lot of trackers and programs focused purely on information dissemination. What was missing was the behavioral component to help patients actually make and sustain the desired changes. Trackers are great for keeping logs of eating habits, exercise, and even blood glucose. But not much more.
And so the Time2Focus diabetes mobile app was born. We’re in the midst of putting the final touches on what will be a groundbreaking phone app to help patients with type 2 diabetes more successfully navigate the ins and outs of the disease, make educated and empowered decisions on a daily basis, and be able to work around real-world obstacles that stand in their way.
The 12-week program is grounded in the behavioral concept of problem solving. In simple terms, this is all about helping patients learn how to apply their own understanding of their diabetes to handle new situations that arise. It requires that patients not only understand their disease and learn key skills, but also are able to apply what they’ve learned to new diabetes-related situations that come up (which happen every day) so they can work around these new obstacles and stay on track.
We’re also using gamification principles to help keep patients motivated and engaged. We’ve designed challenges that not only test knowledge, but ask patients to rely on their new disease understanding and experiences to navigate obstacles. Patients are challenged to apply new concepts and make choices within the app that mimic real-world situations.
As the Time2Focus program development nears completion, we’re gearing up for a clinical trial to test its efficacy among over 100 people living with type 2 diabetes. Patients will spend 12 weeks participating in the program building their problem solving skills and ultimately making improvements in their diabetes health. In addition to behavioral outcome measures, we’ll also be measuring change in HbA1c.
Stay tuned for more details as the app continues to progress.(Read full post)
Yesterday, the NYT featured a story on the genetic testing of embryos to help ensure a deadly disease-causing gene would not get passed on to a couple’s unborn children. Having recently had a child myself, I can understand this family’s desire to protect their children from something that would likely cause suffering and premature death. The genetic testing process resulted in the birth of three children who are free of the gene. The comments run the gamut – some people praise the family for what they’ve done, but others question it. Some comments condemn the mother (who carries the gene) for being irresponsible for bringing children into the world knowing that there’s a good possibility she’ll die before they grow up.
The family indicated that they’ll share what the disease is all about with the kids and how it may affect their mother so that everyone is better prepared for what may happen in the future.
I found this interesting when looking at it from a behavioral perspective. There is clearly a lot of debate around whether or not it was ethical to hand-select embryos. I was even more interested in the thought process surrounding this woman’s choice to know whether or not she was a carrier of a gene that would likely cause early death. At the age of 26, she learned her fate.
How do you live knowing you might have just 5, 10, or maybe 20 healthy years to go? But on the flip side, how do you live as a 26 year old with the uncertainty of whether or not you only have a handful of good years left? How do you plan for the future?
As a behaviorist, this presents an interesting scenario. Knowing she was a carrier greatly increased this woman’s perceptions of control over so many aspects of her life. She felt like she was better able to make choices for herself and her family, feels like she’ll be better able to prepare her children to deal with what may come, and clearly values the need to set expectations for those around her.
Would you want to know whether you carried a gene like this? Would the control you gain from knowing this be empowering or paralyzing?(Read full post)
I am always looking for a better pair of glasses, and with my prescription I am limited with my selections. However, when I ran across the idea of 3D printed frames, I thought that maybe someday I can have the frames I want and the prescription I need without compromise. Protos Eyewear is a startup (currently looking for funding) that has recognized that everyone’s face is unique and is offering glasses that are tailored to the individual – very nice.
It works by sending two photographs of yourself – one head-on and one side profile – that help the Protos team to tweak each design to fit your face. Their advanced software lets you select and alter the design of each pair of glasses to fit your unique features and accentuate your facial structure. Right now they offer only black, but more colors will be offered as they ramp up.
3D printing is being researched for use in many healthcare applications. In a recent article, Forbes provides three great examples of healthcare applications. One is scaffolding to provide custom joint replacements. Another is in medical device manufacture such as custom hearing aids and dental implants. The third deals with printing functional human tissue for transplants.
Protos’ approach is simple and pragmatic and provides a service I see myself using. And another great thing about this on-demand custom process is that it brings manufacturing back to the U.S.
Check out their video below:(Read full post)
I don’t go to the grocery store that often. At work, we have a group called Expedite Group who will do our shopping for us. This not only saves me time, but probably money, too, because I’m not able to just pick up extras that look “interesting” or “tasty.” I also don’t have to worry about falling victim to purchasing extra snacks and junk food as a result of hunger. I have friends who tell me this happens to them all the time, and apparently they’re not alone. An ABC News report investigated this exact topic and found that hungry shoppers not only purchase higher calorie and less diet-friendly foods, but as a result they eat worse all week. So one day of hungry shopping dooms you for seven days.
OK. So if you must physically go to the store, the solution is to just make sure to have a good snack or meal before shopping. If you do this, then you’re good. You won’t mess up your new diet or overspend. Sadly, no.
According to a new study in the journal Obesity, even if you go to the grocery store on a full stomach, shopping after a night of poor sleep can also have deleterious effects on your food choices. Not only are people hungrier when they get less sleep, but it’s long been known that decision-making, in all aspects of life, is affected by sleep deprivation.
In this fast-paced society we live in, five to six hours of sleep is sadly normally for many. So many of us are walking around sleep-deprived. Groups like Expedite Group are wonderful solutions for companies looking to improve work-life balance for employees. They take the burden of grocery shopping, returns, and other errands off the plates of employees to help them focus on work and family life. But this new obesity research shows that helping to improve work-life balance shouldn’t be their only hook for prospective clients. While hiring someone else to do your food shopping is certainly not the only way to stay on track with food choices and health management, it may be a start.(Read full post)
More than one-third of US adults are obese, and this number is only predicted to increase over time. And with obesity, there’s often an increase in the number of preventable health problems, like diabetes, heart disease, and stroke, to name just a few. According to a recent article, online weight loss programs have proven results to help combat this public health problem in the United States.
It comes as no surprise to me that the online, interactive programs that offer chat rooms and individualized capabilities are showing more success with weight loss than pamphlets and other hard copy materials often provided to patients by doctors and counselors. While this study does indicate that in-person weight loss programs are also highly effective, the fact of the matter is that patients may not have the time or money to invest in these kinds of in-person programs. Additionally, healthcare professionals often have limited time with their patients, making it difficult to have a real impact on weight loss in the short time they spend together.
Online weight loss programs pay attention to the drivers and barriers of behavior change – support, motivation, and goal setting, among others – that are specific to weight loss. They allow patients to personalize their experience to ensure it meets the individual goals each person has for him or herself, and help patients overcome the inevitable road blocks along the way. And, online programs are available day and night for patients to access and interact with, providing a constant, long term resource.
As a behaviorist at MicroMass, understanding what patients need to motivate positive change is near and dear to my heart. The science is out there proving that static materials are just not cutting it when it comes to sustainable behavior change. It takes more than a pamphlet; but rather, a true understanding of what is holding patients back, what will drive them to action, and a personalized plan to create the desired change.(Read full post)
Gamification is the infusion of game design techniques, game mechanics, and/or game style into anything, and it has proven popular in the medical world as well. While gamification can help liven up health-related tasks and make them more enjoyable, it can also provide health benefits – take the Pain Squad for young people with cancer, T-Haler for asthma sufferers, the depression-tackling SPARX game and Limbs Alive for hemiplegia patients as good examples.
From my perspective, these solutions are best as part of a well-considered behavior change program for patients.
The Pain Squad app was developed by the Canada-based Hospital for Sick Children, also known as SickKids. Pain Squad gamifies the process of tracking the physical and emotional wellbeing of young people with cancer. Pain Squad uses the narrative of a police force hunting down pain. Patients are inducted as recruits in Pain Squad – a special police force dedicated to hunting down pain. Their pain reporting mission is to fill out a daily survey – which asks questions relating to whether they felt pain that day, how intense it was and its location. Patients move up through the ranks of the force when they keep their records updated. Stars from Rookie Blue and Flashpoint appear in videos that are unlocked when patients do well and progress the narrative. By gamifying the process, the app gives patients an incentive to keep a daily journal of their pain. The app is still in the testing phase, but SickKids hopes to release it later this year. Watch the following video to see how the app works:
T-Haler, developed by Cambridge Consultants, uses wireless technology to gamify inhaler use and help those with asthma get the optimum dose of medication. Interactive software, linked to a wireless training inhaler, monitors how a patient uses their device and provides real-time feedback via an interactive video ‘game’. T-Haler provides visual feedback to the user on their performance and the areas that need improvement. Feedback is highly visual which allows asthma sufferers to see what is wrong with their technique and monitor their progress as they improve. The interface offers visual instructions on how to correctly use the inhaler, such as shaking the device before use. Check out the video and see how it works:
SPARX, which stands for Smart, Positive, Active, Realistic, X-factor thoughts, is a 3D fantasy roleplaying game that teaches young people with mental health issues the skills they need to boost their confidence. SPARX was developed by a team of specialists in treating adolescent depression from the University of Auckand. SPARX leads players through seven realms (each about 30 minutes long) that teach mental behavioral skills for battling depression. For example, in one level, gamers battle their way through a swamp where they’re attacked by black, smoldering balls called GNATS (Gloomy Negative Automatic Thoughts). SPARX doesn’t require supervision and could help fill treatment gaps, especially in underserved areas. It’s also a private way for kids to get help when they may not want to talk to an adult. The SPARX trial results are in the British Medical Journal (20/04/2012). Watch the SPARX trailer:
Limbs Alive is a therapy service for hemiplegia patients that uses games to improve motor skills in a fun way. Using Limbs Alive’s first game, “Circus Challenge,” patients can do much of their physical therapy at home – in conjunction with consultations from experts. This is the first action video game designed specifically to be played at home that provide an expert therapy program. Using wireless controllers, players participate in activities such as lion taming, juggling, plate spinning, high diving, and flying the trapeze. The games are meant to encourage patients to work their way through increasingly difficult levels of movement designed to gradually build up the strength and skills of the patient. Limbs Alive plans to create a whole library of games that help make therapy fun and effective for patients suffering from other conditions such as Cerebral Palsy, Chronic Lung Disease, Type 2 Diabetes and Dementia. Take a look at this video for more background:(Read full post)
Most of my doctors are pretty great. They give me the time I need to get my questions answered, they help allay any fears or concerns that I have, and they are just all around good people. It got me thinking about all of the healthcare reform research that we’ve been doing the last several months and what it truly means for a provider to be “patient centric.” There are so many definitions floating around for this term, but what does it truly mean?
We learned that patients and providers often have different views of what it really means to be patient centric. Patients often determine whether a doctor is patient centric by evaluating their bedside manner while providers see it as a balance between good clinical outcomes, patient satisfaction/customer service, and being able to successfully run their practice. This lack of consensus can be confusing for those who interact regularly with the healthcare system.
In general, patient centricity is a buzzword that’s being used a lot these days, and it clearly needs some additional attention. At MicroMass, we understand what needs to happen to create lasting relationships between patients and providers, between providers and managed care, and between the pharmaceutical industry and its clients. Patients, providers, payers, and administrators all have varying needs in this evolving healthcare environment, and our most recent research study has shed additional light on this topic. Using our behavioral science lens, we’re focused on the relationships that matter most and how to sustain them.
Bottom line: at MicroMass, patient centricity isn’t just a buzzword.(Read full post)
Before the 4th of July holiday, I was getting ready to give a presentation to some of my colleagues here at MicroMass about the basics of healthcare reform, when our office manager turned on the news. I figured that the Supreme Court was going to do what it does best–take its sweet time in making a decision (after all, they had drawn the decision out over an entire month, with political gurus sitting on pins and needles). As the different stations announced conflicting rulings, I scrambled to make adjustments to my PowerPoint. Once the reports all started to agree and I heard the hubbub around the office subside, I finally threw my hands in the air and just wrote a disclaimer at the beginning of my slides:
“UPDATE: The Individual Mandate Stands.”
In the midst of all the media coverage of the Supreme Court decision, I was a bit overwhelmed with information at first. And I guess you could say the CNN and Fox News reporters were, too. One of the main reasons why CNN and Fox News reported an incorrect ruling was because the mandate was determined to be unconstitutional under the Commerce Clause of the Constitution. The Commerce Clause basically states that Congress has the power to regulate commerce with foreign nations, between states, and with American Indian tribes. However, on the following page of the ruling, the Supreme Court upheld that Congress has the power to impose a tax on those who do not buy insurance and therefore the mandate is constitutional under the Tax Clause of the Constitution.
Now, arguably, saying that something is a tax is in fact different than forcing someone to buy insurance. Practically speaking, however, it has the same effect. All Americans will be required to purchase health insurance or face a tax of up to 2.5% of their income.
What will it mean for the average American now that the law has been ruled constitutional? Let’s take a look at what the individual mandate is all about.
Core Components of the Individual Mandate
Under the individual mandate of the Affordable Care Act, all Americans will be required to purchase insurance and insurance companies will no longer be able to deny coverage for people with pre-existing conditions. That’s big news for individuals who are living with a chronic illness and were denied coverage before. There won’t be caps on their coverage, so they will be able to get the care they need when they need it. What does that mean for those who are relatively healthy? They’ll still have to buy insurance, either on their own or through their employer.
The requirement for all Americans, not just the sick folks, to buy insurance is critical, because with more sick people entering the insurance pool, there will have to be more healthy people in the system to offset the costs of care and keep premiums down. The individual mandate is necessary to protect patients with pre-existing conditions, because without it, people could just choose to buy coverage when they get sick, which would mean fewer healthy people in the system to offset costs, leading to skyrocketing premiums.
Now, like any good policy, the Affordable Care Act has plenty of loopholes and caveats. There will be a few groups for which the individual mandate will not result in a tax. These groups include undocumented immigrants, incarcerated individuals, American Indians, and those who have a legitimate religious objection. Many of these groups are covered under different systems and those who cannot afford a plan will have access to government subsidies that will allow them to purchase insurance.
For those who do not have coverage through their employer, state and non-profit-run insurance exchanges will be set up to allow individuals and small businesses to purchase their own plans. Through the exchanges, individuals will have the option to choose from four benefit categories of plans (Bronze, Silver, Gold, and Platinum) and a separate catastrophic plan. New plans through private insurance will be required to comply with one of the four benefit categories.
Almost two weeks after that ruling, there are still questions about the reform that hang in the balance. What we don’t know is how that individual mandate will play out. Is the tax penalty high enough? What are the unintended consequences of this ruling? Only time will tell, but for now, one thing is for certain, the Affordable Care Act is here to stay.(Read full post)