Patients

Patients

Health 2.0: Exclusive Interview with Susannah Fox, CTO of HHS

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Susannah Fox, CTO of HHS, shares how she is fostering patient empowerment and engagement through technology. Matthew Holt, Co-Chairman of Health 2.0, had the opportunity to personally chat with Susannah and learn more about the democratization of healthcare!

Don’t miss Susannah Fox at the 9th Annual Health 2.0 Fall Conference. Purchase your tickets here!

Matthew Holt: Matthew Holt here, delighted to be on with a really wonderful amazing person in healthcare who is not only my friend but also the CTO of HHS, Susannah Fox.  Susannah, thanks so much for joining us.

Susannah Fox: I am thrilled to be talking with you.

Matthew Holt: Well, so those of you who don’t know — Susannah originally was a journalist at U.S. News and World Report and spent many, many years at Pew Research, and is basically leading the survey research understanding the patient experience — probably in healthcare as a whole but studying the patient experience with the use of technology.  She happens to be the first proper keynote speaker we ever had at a Health 2.0 conference back in 2008, attended Health 2.0 in many different places with us, and has been a great friend and colleague.

One of Those Patients

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Dr. RobI’ve been getting winded lately.”

He’s a middle-aged man with diabetes.  This kind of thing is a “red flag” on certain patients.  He’s one of those patients.

“When does it happen?” I ask.

“Just when I do things.  If I rest for a few minutes, I feel better.”

Now the red flag is waving vigorously.  It sounds like it could be exertional angina.  In a diabetic, the symptoms of ischemia (the heart not getting enough blood) are atypical.  It’s the pattern of symptoms that is the most important, and to have exertional shortness of breath which goes away with rest is a pattern I don’t like to hear.

What he needs is a stress test – more specifically in his case, a nuclear stress test (because his baseline EKG is abnormal).  But there’s a problem: he has no insurance.  A nuclear stress test will cost thousands of dollars.

I can refer him to the hospital, but I know the financial situation he and his wife face.  They have no money because of a chronic pain problem he has.  He hasn’t worked in several years, but hasn’t ever been able to get disability either (“I tried, but was denied three times”).  Without insurance he’s not able to get his problem fixed, so he’s disabled.  But he can’t get disability, so he can’t get insurance to get his problem fixed and no longer be disabled.

But the problem on hand is this: he needs a test he can’t afford.

There are many folks out there in this same situation.  It may not just be the people with no insurance, and it may not even be people who don’t have money.  In fact, my own family is facing this same problem.  Multiple family members (myself included) need dental work done.  Some need it done badly, yet we don’t yet have the money to pay for it.  So we wait for the money to show up while the problems gets worse.

Getting Your Own Health Records Online: The Good and the Not So Good

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Lygeia RiccardiMaking Sense of Blue Button, Meaningful Use, and What’s Going on in Washington  …

At the recent Health 2.0 Conference in Santa Clara, co-chair Matt Holt expressed frustration about the difficulty of getting copies of his young daughter’s medical records. His experience catalyzed a heated discussion about individuals’ electronic access to their own health information. Many people are confused about or unaware of their legal rights, the policies that support those rights, and the potential implications of digital access to health data by individuals. The Health 2.0 conference crowd included 2000 entrepreneurs, consumer technology companies, patient advocates, and other potentially “disruptive” forces in healthcare, in addition to more traditional health system players.

Why is this topic so important? Until now, most people haven’t accessed their own health records, whether electronically or in paper, and I believe that making it easier to do so will help tip the scales toward more meaningful consumer/patient engagement in healthcare and in health. Access by individuals and their families to their own health records can empower them to coordinate care among multiple healthcare providers, find and address dangerous factual errors, and take advantage of a growing ecosystem of apps and tools for improving health-related behaviors, saving money on health services, and getting more convenient, personalized care.

A shorthand phrase for this kind of personal empowerment through access to digital health data is “Blue Button,” which is also the name of a public-private initiative in which hundreds of leading healthcare organizations across the US participate. The Blue Button Initiative is bolstered by the electronic access to health information requirements for patients in the “Meaningful Use” EHR Incentive Program, which is administered by CMS (the Centers for Medicare & Medicaid Services) with companion standards and certification requirements set by ONC (the Office of the National Coordinator for Health Information Technology).

Got an Infection? Good Luck Finding an ID Doctor

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Phil LedererBOSTON, Ma. — It was Christmas Day. I was on call at the hospital and was waiting for my wife and 6-week-old son to come so we could eat lunch together. She was bringing kimbap, sweet potatoes, and avocados. But then my pager buzzed.

On the phone was a hospitalist physician.

“Is this ID? We have a new consult for you,” she said. “This man has a history of dementia. For some reason he has a urinary catheter to empty his bladder. We gave him an antibiotic, but now his urine is growing a resistant bacteria.”

I sighed. Yet another catheter associated urinary tract infection.

I walked up the stairs to his hospital room. He was bald, thin, and sitting alone in bed. The peas and fish on his tray were untouched. There were no gifts or tree in his room. I washed my hands, put on gloves and a yellow isolation gown, and introduced myself.

“How are you?”

“Ok, I guess,” he replied.

“Do you know where you are?”

“I’m not sure.”

“You are in the hospital. Do you know what day today is?”

Using a Mobile App for Monitoring Post-Operative Quality of Recovery

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flying cadeuciiWhile your correspondent is tantalized by the prospect of healthcare consumers using mHealth apps to lower costs, increase quality and improve care, he wanted to better understand their real-world value propositions.

Are app-empowered patients less likely to use the emergency room?

Do they have a higher survival rate?

Do they have higher levels of satisfaction?

In other words, where’s the beef?

That’s when this paper caught my search engine eye. It’s a report on using an app to monitor post-operative patients at home.

What Do Women Know About Obamacare That Men Don’t?

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Susan DentzerFor the second year running, more women than men have signed up for coverage in health insurance marketplaces during open enrollment under the Affordable Care Act. According to the Department of Health and Human Services, enrollment ran 56 percent female, 44 percent male, during last year’s open enrollment season; preliminary data from this year shows enrollment at 55 percent female, 45 percent male – a 10 percentage point difference.

What gives? An HHS spokeswoman says the department can’t explain most of the differential. Females make up about 51 percent of the U.S. population, but there is no real evidence that, prior to ACA implementation, they were disproportionately more likely to be uninsured than men – and in fact, some evidence indicates that they were less likely to be uninsured than males .

What is clear that many women were highly motivated to obtain coverage under the health reform law – most likely because they want it, and need it.

It’s widely accepted that women tend to be highly concerned about health and health care; they use more of it than men, in part due to reproductive services, and make 80 percent of health care decisions for their families . The early evidence also suggests that women who obtained coverage during open enrollment season last year actively used it.  

How PCORI’s Research Will Answer the Real World Questions Patients Are Asking

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As a physician, I know the challenge of helping patients determine which health care options might work best for them given their personal situation and preferences.

Too often they — and their clinicians — must make choices about preventing, diagnosing and treating diseases and health conditions without adequate information. The Patient-Centered Outcomes Research Institute (PCORI) was created to help solve this problem — to help patients and those who care for them make better-informed health decisions.

Established by Congress through the Patient Protection and Affordable Care Act as an independent research institute, PCORI is designed to answer real-world questions about what works best for patients based on their particular circumstances and concerns. We do this primarily by funding comparative clinical effectiveness research (CER), studies that compare multiple care options.

But more research by itself won’t improve clinical decision-making. Patients and those who care for them must be able to easily find relevant evidence they can trust. That’s why our mandate is not just to fund high-quality CER and evidence synthesis but to share the results in ways that are meaningful to patients, clinicians and others.

We’re also charged with improving the methods used in conducting those studies and enhancing our nation’s capacity to do such research.

We will be evaluated ultimately on whether the research we fund can change clinical practice and help reduce the variations and disparities that stand between patients and better outcomes. We’re confident that the work we’re funding brings us and the audiences we serve closer to that goal.

Recently, some questions have been raised in health policy circles about our holistic approach to PCORI’s work. That view holds that direct comparisons of health care options — especially those involving high-priced interventions — should be the dominant if not sole focus of PCORI’s research funding approach as a path to limiting the use of expensive, less-effective options.

We agree that discovering new knowledge on how therapies compare with one another is a critical mandate of PCORI and is essential to improving the quality and effectiveness of care.  However, ensuring that patients and those who care for them have timely access to and can use this knowledge, so that they can effectively apply it to improve their decisions, is also very important.

Bridget Duffy: Improving the patient experience

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Bridget Duffy, the CMO of communications tech company Vocera & head of its Experience Innovation Network, is a national leader in the patient experience movement. And we all agree there are lots of improvements needed in the experience for both patients and front line clinicians. Anyone following the story about the death of my friend Jess Jacobs last year knows that there are problems a plenty in how patients are treated (pun intended). Bridget talked with me at HIMSS17 about how well we’ve done and how far we have to go.

Calcium Scan and Subtractive Medicine

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Being a radiologist, I rarely speak to patients, but I was asked to counsel Mrs. Patel (not her real name, so calm down HIPAA totalitarians), who was worried about the risks of radiation from cardiac calcium CT scan. Because of her risk factors for atherosclerosis, her cardiologist wanted her to take statins for primary prevention, but she was reluctant to start statins. They eventually reached a truce. If she had even a speck of calcium in her coronary arteries she would take statins. If her calcium score was zero she wouldn’t. This type of shared decision making is the most frequent reason why cardiologists order calcium scans at my institution.

Why Public Health Needs a New Gun Doctrine

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The Future Looks Like a Girl With a Gun Resized

I am a public health professional, educated at the vaunted Johns Hopkins University Bloomberg School of Hygiene and Public Health. I like guns, and I believe the Second Amendment clearly secures the rights of individuals to own firearms.

You read that correctly. I am a public health professional.

And I like guns.

This make me a heretic in American public health, where embracing firearms and the rights of gun owners is a gross violation of orthodoxy.

As a society, our focus on guns and not gun users derives from the shock of mass killings, such as those in Newtown, CT, Aurora, CO, Virginia Tech, and Norway, which has some of the strictest gun control laws on the planet. Mass killings, however tragic, get distorted by saturation media hysterics and 24-hour political grandstanding. What gun opponents refuse to discuss is the precipitous fall in violent crime and deaths by firearms over the past 20 years, and how it coincides with an equally dramatic increase of guns in circulation in the US.

While that isn’t cause and effect, the association is certainly curious.

In 2013, the Institute of Medicine, at the behest of the Centers for Disease Control, produced a report on firearms violence that has been ignored by the mainstream media. The upshot: defensive use of firearms occurs much more frequently than is recognized, “can be an important crime deterrent,” and unauthorized  possession (read: by someone other than the lawful owner) of a firearm is a crucial driver of firearms violence.

That report went away for political reasons. Translation. Nobody wanted to talk about it because it raised more questions than it answered.