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Category: Patients

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

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).Continue reading…

Why Public Health Needs a New Gun Doctrine

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.

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

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.

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