population health

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Summer Reading: “Get Well Soon: History’s Worst Plagues and the Heroes Who Fought Them”

Summer Reading: Get Well Soon: History’s Worst Plagues and the Heroes Who Fought Them, by Jennifer Wright

At Wellpepper, we’re huge proponents of evidence, and have worked for years with researchers from Boston University and Harvard University to prove that the things that seem like common sense, like providing help outside the clinic in a digital format, will truly improve patient outcomes. Given today’s focus on evidence-based medicine, and even the sometimes dismissal of common sense if there’s no randomized control trial (even chicken soup is subject to peer review), it’s amazing to remember that we once knew so little about what makes us sick, or the difference between correlation and causation.

If you don’t think you’re interested in plagues, think again. This book is a rollicking journey through a history of plagues that is both funny, sarcastic, and tragic. It reminds us that things that seem obvious today might not have been in the past, and that we’re never that far from mass hysteria when we don’t understand the root cause of a new healthcare epidemic.

While there is a chapter dedicated to each historical epidemic, Wright does not talk about the AIDs epidemic of the 1980s. She believes that history needs to be shared by the ones who were there, while her job is to amplify the voices of history so that we stop making the same mistakes. By uncovering how society, medical professionals, or government either did or didn’t cope with a particular epidemic, Wright offers valuable lessons for today.

For example, when exploring leprosy (which by the way, was a required medical test to get a Russian visa when I moved there in 2008 with Microsoft: spoiler alert, I don’t have it), Wright says:

“Diseases don’t ruin lives just because they rot off noses. They destroy people if the rest of society isolates them and treats them as undeserving of help and respect.”

When people blame others for their diseases, or treat them differently, we are not acting better than our ancestors.

Wright also puts into perspective why all types of people fall for information that now may seem ridiculous, with this analogy:

“If you were a peasant and someone said, “If you live in a sewer, the bubonic plague won’t kill you,” your reaction likely wouldn’t be, “I am curious to hear the science behind that.” Your response would be, “Point me to the nearest sewer.”

It’s up to medical professionals to understand why someone believes what they believe, and then try to provide alternate evidence, rather than dismiss it out of hand. It doesn’t mean that you can’t debunk the value of living in a sewer, but do it by understanding where the information came from in the first place. (And also don’t forget that the fake healthcare information is much easier to access than medical journals locked behind firewalls.

Stories of the Spanish flu, and government-sanctioned and media campaign to downplay (aka ignore or bury) the seriousness of the illness so as to not divert energy and enthusiasm for the war effort, versus the example of Marcus Aurelius during the Antonine Plague taking care of business by offering government burials and time off to go to funerals, which both kept bodies from piling up and acknowledged there was a serious problem.

Wright admonishes us to choose leaders well.

“When we are electing government officials, it is not stupid to ask yourself, “If a plague broke out, do I think this person could navigate the country through those times, on a spiritual level, but also on a pragmatic one? Would they be able to calmly solve one problem, and then another one, and then the next one? Or would bodies pile up in the streets?”

As we start to repeat the mistakes of the past (measles anyone?)Wright makes sure to remind us that with our natural human instinct to lean away from bad news, we often forget how bad things were. Measles, anyone?

“Polio was effectively eliminated throughout the world. And then people just … kind of forgot all about polio. This seems to be the human response to any disease. People forget diseases ever existed the minute they are no longer being affected by them. Maybe that’s understandable. Maybe if we all thought about all the potential diseases the world is teeming with, and the extent to which we are, every day, dancing on the edge of a volcano, the world would seem too terrifying to walk around in at all. Or we’d just vaccinate our kids.”

If you’re interested in medical history, policy, or historical epidemiology this makes a light summer read. I’m not kidding. Also, the chapter on Spanish flu should be made into a dystopian/future past film. It’s got everything: media and government cover up, bodies in the street, a mystery, and a hero fighting against the status quo.

Posted in: Behavior Change, Clinical Research, Healthcare motivation, Healthcare transformation, population health, Rare disease

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Population Health and Patient Engagement: A Reckoning Is Coming

Population health and patient engagement should be best friends. To draw conclusions for population health, you need a lot of data, and patient engagement that is, patients interacting digitally with treatment plans and healthcare providers, generates a ton of data. Population health tries to analyze the general to get to the specific and identify patients at risk. Patient engagement starts with the specific patient, and with enough data recorded by those patients, can find general trends.

With patient engagement, the information is real-time. With population health it is backwards-looking. Population health has the richness of the medical teams notes and diagnosis but it is missing the patient perspective. Patient-generated data will have diagnosis if it’s part of a treatment plan prescribed by a physician, but it won’t have the full notes. A blurring of the boundaries between population health and patient engagement presents a way forward to greater insights about both individuals and groups, and can make population health actionable at the individual patient level by providing personalized instructions (with or without care managers).

However, to get to this desired end-state, we need to clear some obstacles, first of which is the idea that patient engagement generates too much data for physicians.

Yes, an individual physician does not want to see or review each data point that a true patient engagement solution generates. However, this information can be extremely interesting to the patient, especially when looking for trends to help self-manage a chronic condition so it is worth enabling patients to collect it. For example, looking at whether certain foods trigger arthritis, or whether certain activities trigger headaches. However, to draw conclusions like this, you must record a lot of data points and in real-time, and this makes physicians nervous. They have enough to do, and not enough time to do it in, so this data cannot add to that workload.

As well, patient-generated data is messy, which can be intimidating, especially in an industry that is looking for deviations from norms. The challenge with patient-generated data is that it can uncover that the long-tail is actually longer than previously thought, that there are sub-groups within previously thought to be homogeneous groups of patients with a similar condition. In the long run, this will result in medical breakthroughs and personalized medicine. In the short run this can be difficult to deal with in the current systems.

the long-tail is actually longer than previously thought

Does that mean that we shouldn’t collect patient-generated data? Not at all. Helping patients track their experiences is a great first step to self-management. Knowing whether they are following a treatment plan, and what their experiences are with that treatment plan can help healthcare systems determine the impact of their instructions outside the clinic.

Although physicians don’t want all this data, healthcare organizations both providers and payers, should want it. Other industries would kill for this type of data. Data scientists and population health managers at health systems should be clamoring for this valuable patient-generated data.

Patient-generated data is usually collected in real-time so it may be more representative of the actual current population. The benefit of real-time collection is that further exploration of the actual patient experience is possible and can be used to prevent issues from escalating. With backwards looking data whatever was going to happen has happened, so you can only use it to impact new groups of patients not current groups.Patient-Generated Data

Finally, patient-generated data is less likely to be siloed, like clinical data often is, because the patient experience is broad and often messy and crosses clinical department thresholds (or more simply, patients are usually treated for more than one issue at a time.) Being relatively new to market, patient-engagement systems are built on modern and interoperable technology which also makes accessing data for analysis easier.

So where will we end up? To our team at Wellpepper, it seems inevitable that influencing and understanding patient experience outside the clinic. If you are making decisions for an individual patient with only a few clinical touch points, this is a very thin slice, often with a specific clinician’s specialty lenses on the actual situation. While healthcare systems are currently dipping their toes in the water on collecting and analyzing this data, if they don’t embrace the whole patient, patients will vote with their feet and pocket books towards organizations that are data and technology driven.

Posted in: Adherence, big data, Healthcare Technology, Healthcare transformation, Interoperability, M-health, patient engagement, population health

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