It Costs Nothing to Care: Why We Need to Provide Health Insurance for Undocumented People

The cost of medical service provision in the United States is one of the most palpable strains on the healthcare system, but we must not forget that cost is the sibling of quality and access—without considering the three as such, we will undoubtedly fail to navigate our country’s healthcare quandary. Low quality care inevitably results in the need for more care in the form of readmissions, while lack of access to primary care leads to increases in the utilization of expensive, emergency services. Of particular concern in our country, a growing contributor to cost, and driven by low quality care and even less access to that care, is the systematic exclusion of undocumented patients. This was made very clear to me through the example of a single suffering patient, Mr. Gomez.

Mr. Gomez was an acquaintance of my family who we would sometimes informally compensate to help with various household construction projects or logistical tasks at my father’s small business. He was originally from El Salvador, and like many others, made the arduous journey through Central America and Mexico to escape the immense gang violence and poverty that afflicts his country. I wasn’t entirely sure, but I could venture a guess from conversations I had with him that Mr. Gomez was undocumented, not uncommon in Southern California; nonetheless, this made life very challenging for him. Among the several daily worries he had, such as driving without a license (although I suppose he now has one, thanks to Assembly Bill 60), he also had no regular access to basic medical care. While in theory he could have gone to one of the free clinics around Los Angeles for a basic work-up, his immense anxiety regarding his immigration status and how that would impact his care led Mr. Gomez to avoid the healthcare system altogether. He is certainly not alone in this fear, and resultant avoidance of contact with the medical system.

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Is Obamacare Working? Show us the Data.

By FRED and ALMA TROTTER

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As President Obama’s healthcare reform unfolds in the last years of his administration, critics and supporters alike are looking for objective data. Meaningful Use is a funding program designed to create health IT systems that, when used in combination, are capable of reporting objective data about the healthcare system as a whole. But the program is floundering. The digital systems created by Meaningful Use are mostly incompatible, and it is unclear whether they will be able to provide the needed insights to evaluate Obamacare.

Recent data releases from HHS, however, have made it possible to objectively evaluate the overall performance of Meaningful Use itself. In turn we can better evaluate whether the Meaningful Use program is providing the needed structure to Obamacare. This article seeks to make the current state of the Meaningful Use program clear. Subsequent articles will consider what the newly released data implies about Meaningful Use specifically, and about Obamacare generally.

A short history of the problem

Historically, the US medical system has been a type of “sickcare”, rather than “healthcare”. It has been reactive – treating the ailment instead of preventing it. Doctors and hospitals have typically been rewarded by volume of procedures, rather than quality of patient outcomes. Instead of patients receiving preemptive care and monitoring early on, they often receive life-impacting procedures and prescriptions later, when their health has visibly declined.

The costs of treating or surviving a condition or injury can consume a person’s time, energy, and financial resources. What’s more, a patient’s safety under a provider’s care is not assured, as preventable medical errors in the US are commonplace – causing 400,000 deaths each year, or the equivalent of two 747s crashing each day.

We know that other national healthcare systems cost less, are subject to fewer errors, and take less of a toll on the patient.  In the US, patients must also voyage through the chaos surrounding their treatment – dealing with rejected insurance claims, record-keeping, confusing follow-ups, and frequent medical errors. These tasks can be complicated and subtle enough to confuse and dishearten the patients involved. Add to that the disturbing frequency of bankruptcy due to medical expenses, and we have a fairly accurate picture of the healthcare system that Obamacare intended to fix.

The nervous system of healthcare reform

The HITECH Act was part of President Obama’s Reinvestment and Recovery Act of 2009. It requires the government to standardize health IT and gives bonus payments to Medicare and Medicaid providers who use that technology well. The funding and regulations surrounding these payments were dubbed “Meaningful Use”.

Most people think that Obamacare is just the Affordable Care Act (ACA). But the first chapter of Obamacare was the HITECH act, which was passed as part of the stimulus package at the beginning of Obama’s first term. This act funded Health IT reform in the United States, and among other things subsidized providers to install software to create and maintain electronic healthcare records for all of their patients.

It is not possible to understand whether Obamacare is successful without using data from these Health IT systems. It is not possible to ask “Is Obamacare working” without Health IT, so a more useful question is “Is Health IT reform working”. The funding for Health IT systems has been less controversial than the contents of the ACA, because Health IT reform has been a rare area of agreement in the United States political system. Both parties have been cheerleaders of improved Health IT technology.

Obama was not the first President to consider or improve the state of health IT in the United States. President Clinton enacted The Health Insurance Portability and Accountability Act (HIPAA), which included safeguards for personal health information. The specific goal for nationwide adoption of electronic medical records (EMRs) was announced by President George W Bush, who also created the Office of the National Coordinator for Health Information Technology (ONC) under Health and Human Services (HHS).

If Obama’s healthcare reform were a ship, Meaningful Use would be both its compass and its rudder. It measures the healthcare system, but can also change health reform’s direction as needed. At least, that is how the program is supposed to work.

Reason for structure

The key component of health IT is the EHR (electronic healthcare record), which stores and shares patient information in a format that is machine and human-readable. This is the record that the doctor or hospital typically maintains about patients.

Before the Meaningful Use program, there was almost no agreement on what an EHR was and how it should be used. It was clear that many people were selling “Health IT snake oil” before the Meaningful Use regulations were in place and expected the HITECH funding to be a source of income. There was also a debate about whether we should call these digital systems Electronic Medical Records (EMRs) or Electronic Health Records (EHRs).

Eventually, the term EHR was defined as a digital health IT systems capable of appropriately moving healthcare data between providers. This concept, shortened to the single word “Interoperability”, would the highest goal of digital health technology. Meaningful Use is designed from the ground up to reject the siloing and data hoarding that had been so pervasive with health IT deployments in the past. If digital health systems remain incapable of exchanging data, then Meaningful Use was a failure.

The policy makers behind the Meaningful Use program had to ensure that the funding would actually serve to improve the care of patients. The term “Meaningful Use” highlights precisely what the Obama administration was most concerned to avoid, “meaningless use”.

For instance, the traditional paper and fax system is still preferred by many doctors. They could buy whatever EHR ended up meeting government standards, receive a payment, but never actually use the EHR they purchased. While the EHR collected virtual dust, the EHR vendor would still get paid (indirectly) by the government.

Even a physician using 90% of their EHR functions could be unaware of, or ambivalent toward some feature the government believes crucial for care quality improvement.

Issues such as these encouraged the creation of detailed and challenging objectives for providers and EHRs. EHR vendors had to meet strict standards for their products. In turn, healthcare providers had to prove that they used those EHRs extensively. While some aspects of Meaningful Use are optional, there is a core list of features that are required of every provider receiving Meaningful Use payments.

Meaningful Use basics

Health and Human Services (HHS) is responsible for implementing most of Obamacare. For the HITECH Meaningful Use program, two HHS sub-agencies were delegated to split the work: ONC and CMS.

The Office of the National Coordinator for Health IT (ONC) was designated as regulator of the standards and testing for an EHR to become certified EHR technology (CHERT). Of course healthcare providers were free to purchase any health IT solutions they liked, but only by using CEHRT would they receive a subsidy from the government for their purchase. CEHRT software was designed to give a provider everything they need to attest in either the Medicare or Medicaid EHR Incentive Program.

Centers for Medicare and Medicaid (CMS), is charged with creating objectives for providers, and measuring their performance in the Medicare attestation process (state agencies assess for the Medicaid program). Objectives vary for eligible professionals and hospitals, and include things like drug allergy checks, recording vitals, and electronic prescribing.

Both the requirements for EHR Vendors and the requirements for healthcare providers were initially grouped into three stages, which increased in health IT complexity, clinical integration, and quality metrics. As the stages got harder and more time passed, the incentive funds would wane and eventually turn into negative adjustments on regular Medicare payments.

Responses to Meaningful Use

Since the beginning of the program, CMS and ONC have been criticized by both vendors and providers in their execution of this program. Vendor associations like Healthcare Information and Management Systems Society (HIMSS), and provider organizations like the American Medical Association (AMA), have been united in their protest of various requirements, almost invariably wanting to lower the Meaningful Use bar. Almost no feedback coming from vendor and provider groups requested that CMS or ONC make Meaningful Use more stringent. Of course, such associations do not represent all providers and vendors, some of whom have requested higher standards for Meaningful Use.

ONC and CMS had to weigh this kind of feedback with the responses from patients, providers, and others with front line EHR experience – those who wanted strong assurances that new digital systems would not fail them in the way that previous generations of Health IT systems had.

Even as the HITECH was being authored, regulators recognized that there would be components of the healthcare industry that would want to progress quickly and achieve the most difficult goals for Health IT, and there would be others that would prefer a more minimalist approach.

The HITECH Act specifically instructs CMS and ONC to make Meaningful Use more challenging over time, and since HITECH was passed the government has already spent $28 billion on health IT reform. During the entire Meaningful Use program ONC and CMS have been under fire from all sides, but with very different messages: “Make Meaningful Use easier”, but also “Make more progress”. In order to determine what to do, CMS and ONC must assess vast amounts of qualitative data as well as subjective industry and public feedback.

Meaningful Use Stages and CHERT Editions

As we seek to evaluate whether or not HHS has been successful pacing Meaningful Use and balancing the interests of the parties impacted by digital health technology, we will need to get specific about requirements for how certified EHRs (CEHRT) and Meaningful Use line up. Essentially, we need to precisely parse what the doctors and hospitals were supposed to do, and what the EHR vendor community was supposed to accomplish.

The first two stages of Meaningful Use have been defined, and the third (and final) is currently undergoing rulemaking. Generally a “stage” refers to a different pile of funding and a substantial increase in complexity of the requirements.

The Definition of Meaningful Use is what determines the objectives in each of the three stages. The definition dictates what providers must accomplish, and it is intended to pair with a particular generation of CEHRT. CMS has regularly changed the Definition to adapt to the needs and requests of providers, vendors, and patients. These alterations result in different “versions” of the each Meaningful Use stage, labeled by the definition year. So the next version of Stage 1 will be “Stage 1- 2015 Meaningful Use Definition”. There are also Stage 1- 2011, 2013, and 2014 Definitions.

Even with its history of changes, Stage 1 adoption is considered by many to be a success. By 2014, two-thirds of all eligible providers had attested to it. Stage 2, however, had a rough start last year. This was partially due to implementation problems with 2014 Edition CHERTs.

Editions of CEHRTs were intended to progress whenever a new Meaningful Use stage began (2011 CHERT Edition at Stage 1’s start in 2011, and 2014 CEHRT Edition at Stage 2’s start in 2014). As the new technology became available, the older EHR technology was meant to fade out. A flexibility rule last year let certain providers who had problems using 2014 CHERT to regress to a Stage 1 attestation, though they were scheduled to be in Stage 2. These providers were also able to attest to the older, 2013 Definition of Stage 1.

Untangling the various stages of Meaningful Use standards is non-trivial, we have released infographics detailing how the program has changed for Eligible Providers and Eligible Hospitals.

Stage 2 and VDT

CEHRT challenges aside, many providers have told CMS that the current Stage 2, with its increased percentage thresholds and new objectives, is too difficult to achieve.  In response to the large volume of such opinions, CMS proposed a rule this April that would drastically change Meaningful Use for 2015-2017. It includes removing redundant and “topped out” measures, switching to one set of mandatory measures (instead of the current core and menu structure), and modifying patient engagement measures.

A cursory inspection of the proposed rule’s public comments indicates overall support from providers, and a backlash from patients. Controversy surrounds the proposal to lower the threshold for patients to view, download, or transmit their information from 5% to a single patient, and to switch the electronic messaging objective from a percentage-based measure to a yes/no for capability.

Thousands of responses were submitted by patients and organizations as part of an organized effort led by patient-advocate leaders. They stated that relaxing the objectives denies patients access their own data, and would prevent them from properly managing their own care.

Providers frequently argued that their patients are elderly or low-income and do not necessarily have a computer, know how to use email, or want to communicate digitally. They believe that the effort required to meet the objective takes away time needed to properly care for the patient.

The Meaningful Use standards that required specific interactions with patients, as well as communication with other providers, caused frustration for providers. They protested that EHR vendors blocked efforts to exchange healthcare data, and that their Meaningful Use funds might not be delivered because third parties were not willing to exchange data.

Subsequent articles, coming soon, will explore in more detail the issues surrounding Stage 2 and VDT, as well as the impact of grandfathering of Meaningful Use funding.

Exchanging healthcare information

From a policy perspective, implementing digital healthcare records nationwide, but failing to ensure that they actually exchange healthcare information, is a little like climbing Mt Everest but failing to make the summit. Simply put, it’s expensive, painful and pointless. This fact did not go unnoticed by Congress, which requested in the 2015 Omnibus Appropriations bill, that ONC use its regulatory power to enforce interoperability. Specifically:

ONC should use its authority to certify only those products that clearly meet current meaningful use program standards and that do not block health information exchange. ONC should take steps to decertify products that proactively block the sharing of information because those practices frustrate congressional intent, devalue taxpayer investments in CEHRT, and make CEHRT less valuable and more burdensome for eligible hospitals and eligible providers to use.

ONC found that healthcare providers and health IT vendors used methods such as charging unreasonable fees for information exchange, creating “non-standard” IT that made exchange difficult, or using policies that restricted individuals from accessing or transferring their data.

It is clear that at least some actors are hampering the efforts of healthcare information exchange. But even health IT backed by vendors with good intentions can still cause serious problems. EHR-born errors have started a new era of patient-safety concerns. Doctors and nurses must be cautious when entering or reading data, and vigilant as they integrate health IT in their already complicated and detailed workflow. Some doctors believe that the government is dangerously rushing EHR deployment, making them choose between protecting their patients or achieving Meaningful Use.

Up until very recently it was not possible to evaluate how CMS and ONC were collectively performing in their management of the Meaningful Use program. But newly public data submitted by providers and hospitals under the Meaningful Use program can be used to evaluate doctors. Subsequent articles will reveal how different vendors influence the performance of providers on the various clinical tasks set before them by Meaningful Use. By using provider performance to score EHR vendors, we will gain insights into how the Health IT marketplace has reacted to the Obamacare incentives, and how effective Health IT will be at measuring the overall performance of an Obamacare-based health system going forward.

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Label Reading: 5 Sneaky Ingredients to Avoid

I’ve been hearing some great feedback from readers on the Go Green 21-day Challenge including increased energy, better digestion and everyone loves checking their pH! It’s not too late to join, find out more here.

I get a lot of questions on ingredients in foods and supplements so I wrote this post to help you navigate ingredient labels a little easier. If there’s something you are still curious about please post in the comments section below and I will get back to you as soon as I can between Vienna’s feedings and burps ;)

I’m going to start off with sneaky ingredients that are best avoided in supplements (and in food!). There are more than 10,000 potential ingredients in food and supplements that fall into the category of additives, according to the Centre for Science and Public Interest. I’ve just selected a handful of the more common ones you might see.

Top Sneaky Ingredients to Avoid in Supplements & Food:

Artificial Sweeteners. The two most popular ones are aspartame and sucralose. They are man-made chemicals in a lab — nothing food-like about them and you’ll find them in many protein bars and powders marketed as “weight-loss” products.

The problem: Research from the Center for Human Nutrition, Washington University School of Medicine showed that when the brain detects a sweet taste this can actually illicit an insulin response — not good if you are trying to keep your blood sugar balanced or inflammation in check. Diet pop drinkers actually tend to gain more fat when they consume beverages made with artificial sweeteners, as shown in The Journal of the American Geriatrics Society. Older studies have shown that artificial sweeteners (aspartame in particular) fuel tumour growth in rats. Anecdotally, I’ve had many clients completely eliminate headaches and migraines by cutting out artificial sweeteners.

Artificial Flavours. The worst part about “artificial flavours” is that food manufacturers do not have to disclose what chemicals these flavours contain. This means you’re playing “Russian roulette” if you have sensitivities to certain chemicals.  You also can’t be certain it is free of genetically modified or synthetic ingredients. The best thing you can do is avoid any supplement or food with artificial flavours. The problem: There is too much unknown about these chemical flavours. A simple rule of thumb is to ask yourself, “Would your great-grandmother have eaten this?” and if the answer is no, you are best to avoid it too. 

Artificial Food Dyes. Dyes are big business because they are one of the most common food additives. They are chemicals to synthetically alter the colour of food, basically make a processed food look more appetizing. 

The problem: Most food dyes are coal tar derived and can be carcinogenic including Red # 3. There are far too many issues with food dyes to list here but check out this article for more info on health problems linked to food dyes. You can see a list of approved food dyes in Canada, the U.S. and Europe here. Just because they are “approved” does not make them safe but this list will help you identify food dyes. Visit your local farmers market if you want to see foods with beautiful ALL NATURAL colours.

BHT: Butylated hydroxytoluene. Not a very appetizing sounding ingredient is it? This lab-made chemical preservative is added to food to prolong shelf life, but it may have negative implications for us.

The problem: It has the ability to cause serious allergic reactions, endocrine disruption, thyroid and kidney problems and may have carcinogenetic effects on the body, according to the David Suzuki Foundation. In fact, The U.S. Department of Health and Human Sciences National Toxicology Program lists BHT as a possible carcinogen. And guess what? You’ll find it in Centrum Vitamins! It’s sneaky cousin BHA is often in the same product — avoid BHA too.

High-fructose corn syrup (HFCS). You’d think by now that all the well-warranted negative attention HFCS has received that it would not be included in any foods or supplements but sadly this is not the case. And labeling can further confuse you because it can be listed as “glucose/fructose”.

The problem: Fructose in a concentrated form is very quickly absorbed into the blood stream causing insulin to spike. It is delivery directly to the liver and triggers lipogensis which means it elevates triglycerides and cholesterol. This is why HFCS is implicated in a variety of problems including obesity, diabetes, fatty liver and so on according to The American Journal of Clinical Nutrition.

The U.S. Department of Health and Human Services National Toxicology Program lists BHA as a possible carcinogen. – See more at: http://ift.tt/1JBkCBz
The U.S. Department of Health and Human Services National Toxicology Program lists BHA as a possible carcinogen. – See more at: http://ift.tt/1JBkCBz
The U.S. Department of Health and Human Services National Toxicology Program lists BHA as a possible carcinogen. – See more at: http://ift.tt/1FH0FhR find it in Centrum Vitamins – avoid at all costs.

Since the Go Green Challenge is happening right now and I’ve recommended Genuine Health’s Greens+ products for your challenge, I thought I would review some common questions I get about ingredients listed on their label.

Common Misconceptions in Supplement Ingredients

Why soy lecithin?

Many people have the misconception that soy lecithin is simply a filler when it is added to nutritional supplements but in Greens+ it has an important purpose. It increases the absorption of the antioxidant compounds by up to 15%. This is quite significant. On another note, most soy lecithin is extremely low in soy protein. Protein is the allergenic part of a food. If you are highly allergic to soy then it may be best to avoid. However, I have a soy sensitivity but I use greens+ every day and it doesn’t bother me. If you prefer to avoid soy, then greens+O formula does not contain any soy.

What’s the difference between an extract vs. food on a supplement label?

Many supplements, especially veggie and fruit formulations may contain over 40 ingredients. It may be enticing to use a product that has this many ingredients but you want to ensure they are potent so you get the benefits they offer. Look for “extracts” for potency of ingredients. For example, if you have a sprinkle of green tea powder it doesn’t ensure that you are getting the active medicinal component of that food. This is why green tea extract would be much more potent and worth your money!

What does it mean when a label states “May contain milk” or “skim milk” on an ingredient?

Probiotics are grown on a dairy medium. This means Health Canada mandates supplement companies to list milk or skim milk as an ingredient even though no milk products have been actually added to the product. If you’re unsure whether a supplement contains milk or it is simply due to the addition of probiotics, it’s best to contact the manufacturer and ask them to clarify especially if you are allergic or sensitive to dairy.

It’s not too late to join the 21-day Go Green Challenge! You’ll be eating more green and taking advantage of daily vitamin G. Learn more here.

Joy McCarthy

Joy McCarthy is the vibrant Holistic Nutritionist behind Joyous Health. Author of JOYOUS HEALTH: Eat & Live Well without Dieting, professional speaker, nutrition expert on Global’s Morning Show, Faculty Member at Institute of Holistic Nutrition and co-creator of Eat Well Feel Well. Read more…

 

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Should the Government Provide Infrastructure For a Health Data Highway?

Susannah Fox, the CTO of HHS was talking at the AcademyHealth Concordium 2015 conference this week. Her energetic call for innovation got me thinking:

Should the government be in the business of funding infrastructure for healthcare communication?

Comparable infrastructures

The governments on local, state and federal level have deployed comparable infrastructures and licensing in the interest of public health and safety:

1. Licensing of car tags while providing infrastructure for roads

2. Licensing of planes and pilots while providing infrastructure for air traffic control

3. Licensing post office locations while providing infrastructure for moving mail

How about: Licensing providers (NPI) while providing infrastructure for health data exchange “highway”?

The communicating health professional

What if providers could communicate in a secure “healthcare highway” or cloud system?

Dr. Specialist: “Hey @npi.1234567890 attached a consult note.”

Dr. Primary: “Thanks @npi.0987654321, sending 3 more pts your way with similar symptoms. (attached)”

Many problems associated with the current healthcare workflow could be solved by bringing all certified health professionals to a global communication platform. Patient safety and quality of care would improve:

1. A physician could easily reach a specialist

2. An ER could send discharge info directly to primary doc independent of participation in their “network”

3. A pharmacists could better identify possible drug-drug interactions and drug adherence/discontinuation

4. The urgent care clinic at the vacation resort could request background clinical information from PCP

Security and Privacy

There are significant concerns about security and privacy.  But similar to cars or planes, people have come to expect that government will ensure that “drivers” have a license and the infrastructure we share meets some operational safety standards. Individual privacy is maintained and protected by laws which prohibit inspection or search of individuals (passengers) except under very specific circumstances.

This idea differs from open HIE in that this infrastructure focuses on enabling a communication highway between healthcare providers. Patient safety and quality of care are the priority and impetus. It should not be viewed as a data repository model, but a transactional model (getting information from point A to point B).  The accumulation of data remains the responsibility and under the control of the federated network of the existing licensed players. This would be no different from the current model in which we entrust the storage of our medical information to licensed providers.

Enabling innovation to solve the healthcare interoperability crisis

New and innovative software solutions trying to facilitate changes in healthcare IT and interoperability are challenged by the market dominance of current vendors.  Integrating novel solutions is therefore dependent on interfacing with currently deployed systems.  With this healthcare information highway, new and independent innovators could plug into a network of connected providers agnostic to other vendors. This would immediately move us toward a learning healthcare system. There would also be beneficial to the current health software vendors who get instant interoperability between all their potential customers and end-users.

This infrastructure could also save millions for the public health sector.  Disease surveillance and mandatory reporting would be instantly and systematically enabled and reach 100% of the licensed providers. Vital activities such as infectious disease reporting, outbreak investigations/syndromic surveillance, or registries (e.g., birth, cancer, immunizations, etc.) could all be facilitated through this infrastructure.

The geeky bits

With the federally mandated NPI we already have a logical provider identifier. The infrastructure will retain a directory with all relevant information: Identifiers, type of provider, names, geo locations, specialties, contact preferences.

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All the NPIs in the directory will be assigned a secret fingerprint. This fingerprint will only be known to the owners and the infrastructure. It would be used (like a key) to verify the communication with the infrastructure.

To initiate a message the sender first requests a communication from the directory. The directory verifies the sender using the secret fingerprint and verifies if the contact preferences of the recipient are met. If so a message key will be generated, encrypted with the sender fingerprint and transmitted to the sender. The sender then decrypts the key with its fingerprint and encrypts the PHI data (attachments) of the message with the key, then uploads the data into the escrow storage. The sender then submits the message header with the key into the messages pool.

The message pool encrypts the message key with the recipient finger print. The recipient now picks up the message header and the key. It decrypts the message key with its fingerprint and downloads the data from the escrow. The PHI can now be decrypted on the recipient side.

Is it 2020 yet?

We should learn from our past. Historically as innovation was adopted, infrastructure was enabled and built for the benefit of the public and the economy: for example trains 1830s, telegraph 1850s, telephone 1880s, federal highways 1940s, and air traffic 1950s. Initial support from government was essential to the adoption and success of these innovations. Each facilitated the transmission of information and people for the benefit of the public and our economy. Even though deregulation and antitrust acts have followed in many of these examples – initial federal investment was essential for their adoption and success.

With healthcare costs rising and the increasing need of integrated and precision medicine to enhance treatments of patients, I believe the government should take any steps needed to enable a cohesive health provider communications network. 2020: The Health Data Highway.

Adrian Meyer is Director of Systems Development at ICISS at UNC.

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Healthcare’s Perpetual War

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There are three visions of peace in the seemingly never ending, but really rather brief, Israeli-Palestinian perpetual crisis. One peace features two independent countries living in collaborative harmony on a piece of land approximately the size of New Jersey. Another peace yearns for a messianic Jewish state stretching from the blue Mediterranean shores to the Jordan River, and possibly beyond. The third and final peace is expected to materialize after the Zionist entity has been permanently erased from the face of this earth, or at least from the face of that New Jersey size holy piece of land.  Each definition is amenable to slight compromises in form, but not at all in substance.

There are three visions for the future of medicine in the seemingly insurmountable, but really rather minor, perpetual health care crisis in America. One future of medicine sees physicians unencumbered by useless administrative tasks, wielding sleek and useful technology tools, offering the best medical care to all patients who need and want attention. Another future is yearning for the revival of chickens and charity as bona fide methods of payment for whatever medical care the free market wishes to bestow on the less fortunate. The third and final future is one devoid of most middling and often faulty doctors, where the health of the nation is enforced by constant computerized surveillance with fully automated preemptive interventions.  Each definition is amenable to slight compromises in form, but not at all in substance.
Years ago I used to walk the streets of East Jerusalem, buy dates in the open air markets of Jericho, and search for the perfect plate of hummus in Ramallah. Everywhere I went people wanted the same things I did. They wanted the rain to stop, or the hams in to break. They wanted their coffee hot and strong and their bread soft and warm. I said shalom and they said salaam and we all meant the same thing, because ironically people in the Middle East always wish peace upon each other, and people like us, who buy and sell cheap jewelry or dates or hummus, actually mean it.

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

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.

And then she more recently spent about a year at the Robert Wood Johnson Foundation as an Entrepreneur in Residence.  And amazingly enough, RWJ and HHS today did a player swap in which Bryan Sivak who was the CTO of HHS went to Robert Wood Johnson and Susannah went to HHS as CTO.  So, Susannah, I hope I got that history about right.

Susannah Fox: Yes indeed, yes.  What was fun about Bryan and I is that when I was being recruited for the CTO role, I didn’t tell anyone at RWJ, and then when I left they had been quietly thinking about Bryan for the role of Entrepreneur in residence anyway.

Matthew Holt: Who gets the player to be named later?  And who is the player to be named later?  All right, so let’s talk a bit.  I want to capture a couple of things that we’re going to talk about.  Obviously, you’re going to be at this year’s Health 2.0.  We’re going to have a little chat and then you’re going to be sitting on our panel mostly about the patient experience and the impact of technology on patient experience and patient outcome, something like that, that’s very close to your heart.

So why don’t we start off a bit on just a little bit about the work you’re doing at RWJ because some people don’t know exactly what you’re doing there and you’re doing some really interesting, deep research there.  So why don’t you say a little bit about your brief experience there?

Susannah Fox: At the Robert Wood Johnson Foundation, I was the second entrepreneur in residence.  The first one was Thomas Goetz.  It’s a really interesting role because they want to bring in an outside perspective to the foundation.  What I decided to look at was how to encourage the foundation to open up more doors and windows to the outside world.  How might we listen more to the communities that we want to serve and therefore serve them better?

The other initiative that I was working on while I was there was recognizing the importance and really the gift of failure that when there is a grant that’s made that doesn’t go very well, that can be as much of a positive learning in the end as a grant that goes really well.

Entrepreneurs know this that if you try out a new project or a new product and customers say, “No, I won’t use that,” that’s actually a gift because you know what not to do.  And so, those are the sorts of principles that I was talking about with the foundation.

Matthew Holt: Sounds good.  Speaking as a “forced entrepreneur,” I’m not sure I like that whole “failure is a gift notion.”  You come to the gift that you pay for, not the other way around.

Susannah Fox: Well, that’s with trying small things and trying little experiments all the time so that you don’t get caught investing a huge amount of money on something that’s not yet tested.

Matthew Holt: Yeah, I think that’s probably very true across foundations as a whole.  Many of them have been guilty enough for any malfeasance of starting long, long initiatives that in the end didn’t pay off much and not doing sort of that fail-fast experimentation at the start that you’re trying to encourage now and you’re actually trying to encourage at HHS.  That’s great.  Can you say a bit more about your patient experience?  You were doing at little bit of it at RWJ as well.

Susannah Fox: Sure.  What I have been doing for the last 15 years, I started doing it while at the Pew Research Center and then continued it with the Robert Wood Johnson Foundation, was always staying as close as possible to the frontlines of healthcare. Tim O’Reilly has this great phrase that “If you want to see where the future is heading with anything but especially with technology, you need to follow the alpha geeks, the hackers.”  In healthcare, the alpha geeks are people living with rare disease and life-changing diagnoses.

And so, what I tried to do is spend time in communities either in real life going to conferences or online in virtual communities, spending time with people who are living with rare conditions because they’re going to push the envelope in every direction in healthcare and in technology.  It’s really by following them that I get my best ideas and see where things are headed.  And that’s also what I’m bringing into HHS, the sense that we need to stay close to the customer, close to the end user.

Matthew Holt: Wonderful.  So now you’re at HHS, let’s talk a bit about that.  First off, you’re the chief technology officer.  But strictly speaking, although you’re following someone who is a deepwater geek in Bryan Sivak who is a technologist who ran technology companies, you’re a sort of journalist/researcher with a deep interest in technology.  That probably implies something about what HHS is looking for in terms of its technology interaction.

We started with Todd Park who was all about opening up data sources and Bryan Sivak who was about — and you can correct me if I’m wrong — building tools and relationships to use that data on top of those data sources and obviously following on Todd’s work.  That work I’m sure is continuing.  I know I’ve seen some great stuff at HHS in the technologies offices and you can talk a bit about who’s doing what there.  And great foundations have been laid for that.  And obviously, there is Health 2.0 and Health Data Initiative and a bunch of other areas and a bunch of other people as well obviously working on that and that’s continuing.  But give me a sense about your special interests and your special flavors that you’re going to bring to this.

Susannah Fox: Well, I’ve always been interested in understanding how people are engaging with technology and engaging with healthcare.  That turned out to be a keyword also for the people who were interviewing me for this job.  When I kept saying, “Now, you understand that I’m more of an anthropologist than a technologist?” they would say, “Yes, yes.”  And I would say, “Okay, I’m really interested and even to the point of obsessed with patient empowerment and patient engagement.”  And they said, “Yes, exactly, thank you,” because they understand that technology these days is not necessarily about the code, it’s about culture.

In bringing me in as the chief technology officer now, they’re acknowledging that what we really need to do is have a holistic view of how technology is affecting American healthcare. What’s great is that this really is a continuation of the work that Todd and Bryan did because part of being the chief technology officer, it’s really the chief innovation officer.  Bryan added the title also of “Entrepreneur in Residence” at HHS.  It’s bringing that sensibility of an outsider view into the secretary’s office so that our role here and the Idea Lab and as CTO is to look across the landscape and look a little bit into the future and help people here at HHS to anticipate the future better.  The best way to do that is to, again, follow the alpha geeks to make sure that you have the perspective of your customers which again is a core principle of being a great entrepreneur, to always be sure that you’re serving your customer.

Matthew Holt: Can you say a little bit about the infrastructure you already have there and the kinds of projects that you’re actually working on now and what we can expect to see?

Susannah Fox: Yeah. We divide the work of the Idea Lab into three areas.  The first is promoting internal innovation.  That is where we teach the entrepreneurial principles and design thinking to people who work here at HHS and across all the 11 operating divisions.  We do that in three ways.  We have an Ignite Accelerator program, that’s a three-month program that’s pretty competitive to get in.  Once people get in, they bring in a problem to be solved.

Matthew Holt: Is that internal HHS stuff or is that anybody?

Susannah Fox: Yeah. People apply who work at the CDC or the FDA.

Matthew Holt: Somewhere across the organization.

Susannah Fox: Somewhere all across the operating divisions.  They then come in for individual mentoring and training to try and solve a problem that they’ve encountered in their work.  What’s wonderful is that we also bring in advisors from the University of Maryland.  We give these folks who are working for the federal government the opportunity to think like an entrepreneur and to learn some of those skills.  We give them a little bit of money.  But the most important thing is that we give them some air cover so that they get permission from their supervisor to work on something new and to essentially try and create a minimum viable product that they then put in front of their customers.

It’s very accelerated. Our demo day is actually going to be this Thursday where it’s kind of the graduating class of the current crop.  One of the projects has been so successful that it actually has already launched because they created something that their supervisor and colleagues were so in favor of that they said, “We’re not going to wait for your graduation from this program.  This is fantastic, we’re doing this.”

The other thing that we do is we have a Ventures Fund where we seed projects that might not get noticed otherwise but we have a little fund that we try our hand in a little venture capital within HHS.  We also hold award ceremonies, the Innovates Awards.

The second area that we look at is leveraging external innovation.  And this is wonderful.  We bring in external entrepreneurs and innovators into the federal government for short sprints, either one or two years, again, to tackle a specific problem.  If you’ve heard about the Presidential Innovation Fellows program at the White House, that actually is based on our entrepreneur in residence program.  It’s something that Todd started here and then brought with him when he became the White House CTO.  What that does is it first of all brings in outside skills that maybe people within government don’t have, and there are some really fantastic examples which I can talk about.  But what we also really want to do, part of the ulterior motive is to infect people with this idea that innovation can happen in the federal government.

And so, half of our EIRs and IIRs have been asked to stay on and many of them do.  That’s a way for us to build the talent within the federal government to attract people who never really thought they would do federal service, like me.  They bring them in and show what great impact you can have working here.

The third area that the Idea Lab looks at is building collaborative communities.  With that, the Health Data Initiative is the most well-established of those programs.  We’ve really created a community around open health data.  Not only a community, but a marketplace where there is so much interesting development going on around the data that the government releases about healthcare.

We also have something called “Buyers Club” which is about something that I really honestly didn’t know anything about before I started here which is government acquisition.  But we really, really need to modernize it.

Matthew Holt: “Buyers Club,” you said?

Susannah Fox: “Buyers Club,” isn’t that a great name?

Matthew Holt: It’s like the Dallas Buyers Club, yeah, illicit distribution of medication in HHS?  No, you’d better deny that part.

Susannah Fox: One of the themes across all of these is that we need to have interdisciplinary teams.  That’s something that we promote across all the areas that we work on.  And it’s true for Buyers Club as well.  It’s something that you need to bring in, for example, a contracting officer as soon as you have an idea for a new government program because that person can help you design a contract that, for example, is agile instead of waterfall design understanding that anything having to do with digital or software these days, you need to have a different kind of acquisition of that kind of service. Now, what I’m really interested in is that all of these programs point towards democratizing and opening access to information data and tools.

And you’ll notice, Matthew, but the thing that I’m currently obsessed with is the “Maker Movement.”  Do you know about the Maker Movement?

Matthew Holt: Of course, yeah.  In fact, years ago, Health 2.0 had a booth at the Maker Faire.

Susannah Fox: Really?

Matthew Holt: It was really funny.  That Health 2.0 actually was like a whole pavilion, they (00:15:25) worked on this together.  It was on a county fair ground, and because they had to have the same vendors as any other fair in the county fair ground, immediately outside the Health 2.0 sign was the funnel cake, right there.

For those of you listening who don’t know, the Maker Movement is the modern-day tinkerers, people who are building things with their hands and technology and the physical embodiments of technology.  So then you’ve got the got the backyard building rockets and building robots and building stuff.  There are applications all over the place.  It’s really quite fascinating.

Susannah Fox: Yeah.  And it’s our answer to sort of the homebrew computing club.  What’s built in garages is now coming out for show and tell at Maker Fairs and other places.  I started picking up signals about this about five years ago in my fieldwork where I would be talking to people with diabetes or rare disease.  I would be asking them about access to information, access to data, and access to crowdsourcing techniques.  And they would say, “Yes, yes, I can tell you about that.  But let me show you what I made.  Let me show you this device that I had to create for my kid.”  Or, “I’m a caregiver for someone and this is the way that I had to create something to prevent, for example, my loved one who has dementia from flushing her adult diaper down the toilet.”

You might remember that I talked about this onstage during the unmentionables panel one year.  This is something that I’m very, very interested in.  I think that the Maker Movement will have as significant an effect on health and healthcare as we’ve seen for data particularly as the costs of manufacturing go down and 3D printers and other technology start to become very, very common.  Just like cloud computing with the accelerants that got poured on the fire for big data, the lowering cost of manufacturing is the accelerant that’s going to get poured on the fire of what I’m calling the “inventing health” or “health maker ecosystem.”

Matthew Holt: That’s very cool.  Actually, Indu and I were talking about this, how to describe what I was starting to call — I call it the democratization of diagnosis, it’s one thing, and then the sort of lowering and up streaming of treatment.  And then you’re talking now about all the other pieces that go around that including, like you said, flushing the adult diaper down the toilet, what kind of tools can prevent that and what can be built openly?  And this is happening obviously not just in health but in energy and in manufacturing, across the board.  But it’s fascinating.

Susannah Fox: Yeah, absolutely.  And in joining the federal government, there actually is already an interest group of people who are interested in the Maker Movement.  There are people at, actually, FDA and NIH as well as USAID and the VA.  There are all kinds of people who are already interested in this in all sorts of sectors of healthcare.  So drawing that together and understanding what we in government can do to understand this ecosystem and to, frankly, get out of the way sometimes.  That sometimes is the best role for government.  To, again, open up doors and windows so that people can see in and so that we can learn from people who are really on the front lines of healthcare.

Matthew Holt: Fabulous.  Okay.  Well, let me say thank you very much to my guest, Susannah Fox, CTO of HHS.  We’re looking forward to seeing Susannah onstage.  She’s on a panel, as she ought to be, on the patient experience, the new patient experience and outcomes which is coming on Monday afternoon.  We are on just after Chelsea Clinton.  Well, after Chelsea Clinton and Indu herself which is very, very impressive.

And there is going to be a lot of great technology on that panel showing a lot of the things that may impact patient experience.  We’ll have a patient, Kym Martin who you know well, who has had more bouts of cancer than most people can imagine, and Sachin Jain who is now the CMIO down at CareMore.  But it’s going to be a great panel and I’m looking forward to chatting with you there and seeing you then.  So, Susan, I thank you so much for your time today.

Susannah Fox: Thank you.

 

Deepa Mistry is a Marketing & Operations associate at Health 2.0

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The HDE Project coming to Health 2.0’s annual Fall Conference!

The Health Data Exploration project, sponsored by the Robert Wood Johnson Foundation, is building a network of academic, public sector, and corporate partners working together to catalyze the use of personal health data to conduct research that benefits the public good.

Individuals are tracking a variety of health-related data via a growing number of wearable devices and smartphone apps. More and more data relevant to health are also being captured passively as people communicate with one another on social networks, shop, work, or do any number of activities that leave “digital footprints.” Self-tracking data can provide better measures of everyday behavior and lifestyle and can fill in gaps in more traditional clinical or public health data collection, giving us a more complete picture of health.

The HDE team works on a variety of projects that demonstrate the value of using personal data in research and create reusable templates, policies, and infrastructures for using new forms of data. Core research projects address cross-cutting issues relating to personal health data including exploring barriers to data sharing (including privacy and consent issues) and addressing methodological challenges that arise from these new forms of data.

The HDE project has also funded a number of agile projects focused on questions related to personal health data and conducted by small, multidisciplinary teams of network members. These shorter-term projects offer the research Network an opportunity to make incremental investment to open new research opportunities, create open infrastructure and data sources for the research community, and help create new training opportunities for the field. You will hear about the latest developments in both of these types of projects at our workshop.

The HDE Network also hosting a series of webinars on topics related to personal health data research, including IRB and informed consent, research ethics, privacy, and N of 1 trials.

To learn more about the HDE project please join us at Health 2.0’s conference for an interactive dialogue on Monday, October 5, 9-11:30 AM, in Ballroom H. We would like to hear your ideas about how we can accelerate the development of new collaborative relationships between companies and researchers that will be critical if we are to realize the benefits of new opportunities such as the Precision Medicine Initiative or the NIH and the ongoing efforts in NIH’s Big Data to Knowledge program. You’ll hear insights from industry leaders about how their companies are collaborating with researchers and learn about opportunities for public-private sector partnerships — and why it’s good for business.

Finally, join our network! It’s free and will ensure you stay up-to-date on our projects, webinars, and new developments in personal health data. Sign up here!

Deepa Mistry is a Marketing & Operations associate at Health 2.0

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ICD-10 and the Apocalypse

Screen Shot 2015-09-28 at 9.42.44 AMOctober first is nearly upon us.  For many of us, this date has little significance beyond the promise of cooler weather, lovely autumn colors, and the invasion of neighborhoods with giant inflatable Halloween decorations.  While these decorations are fascinating to me, they do cause me to ponder the enormous gulf  between my taste and that of my neighbors.  I am not certain if this is meant to scare off potential alien invaders or simply to make them think we are not worth bothering with.

October 1, however, is a huge day to the medical community.  It is a day that will live in infamy.  It is the object of dread, of diaphoresis, of doom.  October 1 is ICD-10 day.  This view was further bolstered when I went to the CMS (Government Medicare) website, there was actually a doomsday countdown timer at the top of the page. Just looking at this makes me anxious.

For those still unaware, ICD-10 is the 10th iteration of the coding taxonomy used for diagnosis in our lovely health care system.  This system replaces ICD-9, which one would expect from a numerological standpoint (although the folks at Microsoft jumped from Windows 8 to Windows 10, so anything is possible).  This change should be cause for great celebration, as  ICD-9 was miserably inconsistent and idiosyncratic, having no codes describing weakness of the arms, while having several for being in a horse-drawn vehicle that was struck by a streetcar.  Really.

But, as Abe Lincoln may have said, better the devil you know than the one you don’t.  We all got used to the stupidity of ICD-9, and, like the crazy neighbor who puts huge inflatables of the Santa Maria in their yard on Columbus day, we learned to tolerate its eccentricities.  It’s better than having an axe murderer or hospital administrator in that house.  Unfortunately, the folks over at ICD Inc. got overly zealous in their desire for completeness, increasing the number of codes from the 17,000 in ICD-9 to over 90,000 in ICD-10.  It’s as if that neighbor not only added the Nina and Pinta to their lawn, but also inflatable natives infected with smallpox along with a mural depicting the skyline of Columbus Ohio.  It seems a bit over the top.

Anyone paying attention to this subject knows of the ludicrous codes now available to the medical community (being bit by a duck while wearing a thong, being bit by a duck that is wearing a thong, being bit in the thong by a duck, being crushed by a giant inflatable while eating kale, etc), so I won’t go into those now.  These give health wonks hours of entertainment, for which we are all grateful.  But there is a much bigger, more serious set of problems brought about by the onslaught on the medical community by the ICD hoards.

Before I go into this, however, let me state that, because I no longer live in the insurance world (doing Direct Primary Care), I do not bear the brunt of this apocalypse.  Yes, we are inconvenienced by the need to submit ICD-10 codes for consults, labs, and procedures, but that is about the extent of it.  I was tempted to get snarky here and lord this fact under my suffering colleagues, but thought better of it.  While this may be a boon to the growth of alternative practice models like DPC, gloating over it seems cruel.  Having lived in the land of insurance and codes for 18 years, the prospect of converting over to ICD-10 even now gives me cold sweats.

There are two main problems with this conversion from 9 to 10.  The first problem is that, as I’ve written before, codes are the product produced by health care businesses.  Health care providers (doctors, hospitals, and the rest) are paid for producing problem (ICD) codes and matching them with procedure (CPT and E/M) codes.  This is the product they sell to their true customer: the third party payors.  Submission of the wrong codes has one main result: no payment.  Codes are the lifeblood that carry the money to medical providers, and so changing those codes threatens the financial viability of medical businesses, large and small.  Get this conversion wrong, and you don’t make enough money to stay in business.

Now, because there has been enough time and the with ubiquity of EMR systems centered on billing, the ironic heroes in this may be the EMR vendors.  This should minimize the overall damage to the financial survival of medical businesses.  Despite this fact, the conversion of codes strikes at the very heart of our health care business model.

The bigger issue here is the fact that, while they are the ones saddled with the expense of conversion and the ones facing the financial risk of not doing so, there is no obvious advantage to the doctors themselves to be making this transition.  ICD coding is a billing nomenclature that does not give any apparent benefit to patient care. Codes don’t help us make diagnoses, nor do they improve doctor-patient relations. In fact, it’s very likely that this transition will lessen the ever waning focus on the patient while providers are obsessing on getting the code that will get them paid.  The only positive most medical practitioners will see out of this conversion is getting rid of ICD-9.

Perhaps, like the 30 foot Santa riding a motorcycle which exploded in my neighbor’s lawn last December, my fears are overinflated.  The reality is that October 1 will come and go without the world caving in on the medical community.  But my fear is that this is one more way our system is alienating and frustrating its workforce.  This is, in my view, the more serious problem that will soon overtake all others.  It is possible to still love practicing medicine, even in the screwed up system we have.  But the number of doctors, nurses, and other providers who are reaching their limit is growing quickly, as witnessed by the number of phone calls and emails I am getting from doctors looking for an alternative.

Perhaps that’s a good thing, as the misery created by ICD-10 may drive the system toward a better model.  But I don’t imagine the ICD corporation and its minions are pushing this on us with this intent.  Someone somewhere thinks this makes sense.

Just like my neighbor who thought it made sense put a giant inflatable pregnant woman in front of their house for Labor Day.

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America’s Nursing Crisis

Many of the nation’s nurses understandably erupted in anger when the co-hosts of ABC’s The View mocked Miss America contestant Kelley Johnson for her pageant-night monologue about being a nurse — and for wearing scrubs and a “doctor’s stethoscope” (their words) in the talent competition. The co-hosts, Joy Behar and Michelle Collins, have since apologized, especially for implying that only doctors use stethoscopes. “I didn’t know what the hell I was talking about,” Behar later said.

It would be easy to attribute this episode solely to the ignorance of some TV personalities, but as most nurses know, the problem goes far deeper. The fact is that much of the nation doesn’t really understand nursing, either.

It’s true that the public rates nursing in Gallup surveys as the most honest and ethical profession. Yet it’s unlikely that most Americans understand the range of critically important roles that nurse’s play across the health care continuum, from health promotion, prevention, and research, to palliative and hospice care.

How many Americans know that patients who obtain organ transplants will have far more contact with – and obtain more hands-on care from – a transplant nurse than a surgeon? Or that two-thirds of all anesthetics given to US patients are delivered by certified registered nurse anesthetists, rather than anesthesiologists with medical degrees?

How many Americans are aware of the role that nurses and nurse practitioners play in advancing the health of communities by addressing some of the root causes of poor health? In Philadelphia, PA, the 11th St. Family Health Services, a nurse-managed clinic, learned through studies that nearly half of the clinic’s adult patients had undergone four or more adverse childhood experiences, such as physical and sexual abuse, that are closely linked to chronic illness later in life.
A resulting focus on preventing and treating the effects of these traumas is now a hallmark of the clinic’s care.

In the end, how many Americans on their own could summon up this description of nursing by Sandy Summers, a master’s degree nurse, and co-author of Saving Lives: Why the Media’s Portrayal of Nursing Puts Us All At Risk: “Nurses practice in high-tech urban trauma centers and in vital health programs for poor mothers in bayou swamps. They work in leading research centers and in disaster zones. Nurses monitor and manage patient conditions, prevent deadly errors, provide skilled emotional support, perform key procedures, and work for better health systems.”

Given the breadth of contributions that nurses make, it’s little wonder that the Institute of Medicine (now the National Academy of Medicine) declared in a seminal 2010 report that nurses should “lead in the improvement and redesign” of the nation’s health care. But the report pointed to several hurdles that would have to be overcome for that to happen. These are hurdles that wouldn’t exist, if the nation truly understood the importance of nursing in health and health care.

Consider the role of advanced practice registered nurses, those with masters or doctoral degrees. These include nurse practitioners, who are trained to take health histories and perform physical exams; diagnose and treat acute and chronic illnesses; prescribe and manage medications and other therapies; order and interpret lab tests and x-rays; and provide health teaching and counseling.

Those are the skills and capabilities that could help redress the lack of care in hundreds of medically under served areas across the country – or alleviate what is frequently couched as a “doctor shortage.” And in fact, under current law, nurse practitioners can practice independently and to the full extent of their training in 21 states and the District of Columbia.

But in more than half of the rest of the states, so-called scope of practice laws limit the breadth of nurse practitioners’ practice,or require them to be linked to, or even supervised, by a physician. There, nurse practitioners cannot prescribe controlled substances, such as medications for attention deficit and hyperactivity disorder, unless they “collaborate” with or are supervised by a physician. In states like Michigan and Oklahoma, nurse practitioners cannot prescribe physical therapy for patients, or sign death certificates. In some states like Alabama, they not only can’t practice independently of physicians, but they also can’t even sign handicap-parking waivers or workers’ compensation claims.

Following the release of the IOM report, a Campaign for Action to address many of these challenges was launched by the Center to Champion Nursing in America, an initiative of AARP, the AARP Foundation and the Robert Wood Johnson Foundation. Under the campaign, 51 state coalitions are tackling issues such as scope-of-practice and advancing the level of training and education of the nation’s nurses. A dashboard on the campaign’s web site shows that the progress has been mixed.

In areas where nurses have their own power to effectuate change, such as advancing their own education, there have been major strides.As of 2013, nearly 15,000 nurses were enrolled in Doctor of Nursing Practice programs, more than double the number in 2010.

But in areas where others are making decisions about nurses’ roles, progress is scant or nonexistent. Although the IOM report recommended that more leadership positions in health systems should be made available to and filled by nurses, only 5percent of hospital board of directors or trustees had nurses on them in 2014, down from 6 percent in 2011.

Complicated dynamics of professional rivalries, gender discrimination (more than 90 percent of nurses are female), and even inertia, clearly lie behind the nation’s inability to make full use of its nursing resources. But another component is surely ignorance, and perhaps even condescension.

Consternation that those forces are still at play clearly motivated the nurses who sent tens of thousands of tweets in protest of The View cohosts’ remarks. Fortunately, patients with first-hand knowledge of the important contributions that nurses make to their health and wellbeing may be better equipped to accord nurses the respect they deserve.

After all, as Kelley Johnson recounted in her pageant monologue, it was one of her grateful patients — an Alzheimer’s sufferer named Joe — who once chastised her for always demurring that she was “just a nurse.” “Although you say it all the time, you are not ‘just a nurse,’” he told her. “You are my nurse, and you have changed my life because you have cared about me.”

“Joe reminded me that day that I’m a lifesaver,” Johnson told the pageant audience. “I’m never going to be ‘just a nurse’.”

Please join the Robert Wood Johnson Foundation on October 2 from 12:15 – 1 p.m. ET for a First Friday Google+ Hangout on Why Nursing is Key to a Culture of Health.  Register here.

Susan Dentzer is the Senior Policy Adviser to the Robert Wood Johnson Foundation.

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