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A Duty to Share Patient Information

May 8, 2013• 4

By Vince Kuraitis and Leslie Kelly Hall

The sharing of patient information in the US is out of whack — we lean far too much toward hoarding information vs. sharing it. While care providers have an explicit duty to protect patient confidentiality and privacy, two things are missing:

the explicit recognition of a corollary duty to share patient information with other providers when doing so is the patient’s interests, and
a recognition that there is potential tension between the duty to protect patient confidentiality/privacy and the duty to share — with minimal guidance on how to resolve the tension.

In this essay we’ll discuss:

1. A recent recognition in the UK

2. The need for an explicit duty to share patient information in the US

Open Data Advocate Joins Patient Privacy Rights Group as Chief Technology Officer

May 7, 2013• 8

By Adrian Gropper, MD

The small news is that I formally joined Patient Privacy Rights as chief technology officer. I have been an extreme advocate for open data for years. For example, I’m a card-carrying member of the Personal Genome Project where I volunteer to post both my genome and most of my medical record. PPR, on the other hand, is well known for publicizing the harms of personal data releases. These two seemingly contradictory perspectives represent the matter-antimatter pair that can power the long march to health reform.

The value of personal medical data is what drives the world of healthcare and the key to health reform. The World Economic Forum says: “Personal data is becoming a new economic “asset class”, a valuable resource for the 21st century that will touch all aspects of society.” This “asset” is sought and cherished by institutions of all sorts. Massive health care organizations, research universities, pharmaceutical companies, and both state and federal regulators are eager to accumulate as much personal medical data as they can get and to invest their asset for maximum financial return. Are patient privacy rights just sand in the gears of progress?

Doctors and the Means of Production

May 7, 2013• 15

By John Schumann, MD

It was bound to happen.

By “it,” I mean that the small group of speciality hospitals (usually orthopedic or cardiology-focused) across that country that are owned by doctors were going to have their “See! We Told ‘ya so!” moment.

Doctor-owned hospitals: How many are there? Two hundred and thirty-eight of them in the whole country (out of more than five thousand)–somewhere between four and five percent of the total in the U.S. (numbers courtesy TA Henry from this excellent piece).

What are the issues?

ObamaCare effectively bans doctors from owning hospitals in the U.S.
Those already in existence are grandfathered in under the law.
We know that doctor-owned hospitals have higher average costs–hence the rationale for banning them under a law with the intent of “bending the cost curve.”

Cue the iron-o-meter:

In the most recent Medicare data (December 2012 report on “value-based purchasing“), doctor-owned hospitals did well in terms of achieving quality milestones.

How well?

Really well. Physician-owned hospitals took nine out of the top ten spots in the country. And in spite of their low relative number, forty-eight out of the top one hundred.

Open Access: The Next Steps

May 7, 2013• 2

By Andy Oram

A useful and well-written summary of open access to publications in the medical field triggered some thoughts I’d like to share. The thrust of the article was that doctors need more access to a wide range of journal publications in order to make better decisions. The article also praises NIH’s open access policy, which has inspired the NSF and many journals.

My additional points are:

Open publication adds to the flood of information already available to most doctors, placing a burden on them to search and filter it. IBM’s Watson is one famous attempt to approach the ideal where the doctor would be presented right at the point of care with exactly the information he or she needs to make a better decision. Elsewhere, I have reported on a proposal to help experts doctors filter and select the important information and provide it to their peers upon demand–a social networking approach to evidence-based medicine.

Not only published papers, but the data that led to those research results should be published online, to help researchers reproduce the results and build on them to make new discoveries. I report in an earlier article on this site about the work of Sage Bionetworks to get researchers to open their data. Of course, putting up raw data leaves many challenges: one has to be careful to deidentify it according to accepted standards. One has to explain the provenance of the data carefully: how it was collected and massaged (because data sets always require some culling and error-correction) so it can be understood and properly reused. Finally, combining different data sets is always difficult because they are collected under different conditions and with different assumptions.

Massively Open Online Medicine

May 6, 2013• 6

By David Harlow

The new darling of the online educational community is Massively Open Online Courses (MOOCs). The example which figures most prominently in the popular imagination is the Khan Academy, though its founder says otherwise, noting that MOOCs are merely online transplantations of traditional courses, while Khan Academy offers something different.

Others would take issue with his conclusion, or characterization. A “connectivist” MOOCis based on four principles:

Aggregation. The whole point of a connectivist MOOC is to provide a starting point for a massive amount of content to be produced in different places online, which is later aggregated as a newsletter or a web page accessible to participants on a regular basis. This is in contrast to traditional courses, where the content is prepared ahead of time.
Remixing, that is, associating materials created within the course with each other and with materials elsewhere.
Re-purposing of aggregated and remixed materials to suit the goals of each participant.
Feeding forward, sharing of re-purposed ideas and content with other participants and the rest of the world.

Sounds great, but is it working? Can it work? A piece in the current issue of The Washington Monthly took a look and concluded:

Given the current 90 percent dropout rate in most MOOCs, an 8-point gap in completion rates between traditional and online courses offered by community colleges, the 6.5 percent graduation rate even at the respected Western Governors University, and the ambiguity of many other higher education reform ideas, there’s good reason to think that an unbound future might not be so great.

The best American innovations in education were the Land-Grant College Act of 1862, which helped create a system of public universities, and the GI Bill of 1944, which ensured that an entire generation had the money to attend college. This widespread access to the college experience enabled people from working-class backgrounds to advance en masse into professional jobs that required reasoning and logic and extensive knowledge of the world. The question is whether or not we will continue this trend or simply give up and say that a few online classes and specialized training are good enough for the majority of Americans.

In other words: Democratization of higher education – good; MOOCs – not so much.

Why is this relevant to you, gentle reader?

The question is whether the promise of MOOCs, or their inability to deliver, will characterize MOOM — Eric Topol’s neologism, “Massively Open Online Medicine,” used in his HIMSS 2013 keynote.

In health care, a perfect implementation of big data and data analytics, combined with open access for clinicians and patients, would yield a success in MOOM along the lines of a connectivist MOOC.

Testing Wisely

May 5, 2013• 20

By Rob Lamberts, MD

I remember going to see the movie “Oliver” in the theater when I was a kid. Since this was my first movie in a theater, my mom made me a treat: a bag full of raisins and chocolate chips (Raisinets for Dutch people) and sent me there with my sister. It was a fine film, with Oliver getting kicked out of the orphanage when he wanted more gruel, the dastardly Bill Sykes threatening Oliver and sweet Nancy, the funny and clever artful dodger and Fagan teaching Oliver about life on the street, and with (spoiler alert!) good overcoming evil in the end Oliver getting adopted by a rich dude so he can get all the gruel (or real Raisinets) that he wanted. And though my memories of the movie are still vivid, my strongest memory was the look on my sister’s face when I walked out of the theater covered with melted chocolate chip goo. It went into family lore (and wouldn’t have happened if they had sprung for Rasinets, I might add). I think they still don’t trust me with chocolate chips.

The key line in the film comes when Oliver loses a bet and goes up to the gruel-master and says: “Please Sir, I want some more.” Which, as I am sure Oliver expected, causes the gruel-master to break into the song, “Oliver! Oliver! Never before has a boy wanted more!” and the whole dining hall to pull out musical instruments and singing harmony to the gruel-master’s admonition.

I can see why Oliver was scared. A whipping is welcome compared to his whole world breaking into song and dance.

Asking for “more” has caused trouble over the ages. Adam and Eve wanted more food choices, the people of Pompeii wanted more mountain-side housing, Napoleon and Adolph Hitler wanted to spend more time in Russia, and America wanted more of the Kardashians. We can all see what destruction those desires reaped.

Americans have been viewing health care the same way, always wanting more: more antibiotics, more technology, more robots doing more surgery, more expensive treatments for more diseases. The result: health care costs more in America than anywhere else. Some folks think that our “more” approach makes our health care “the best in the world,” after all, where else can you get so many tests just by asking. MRI’s for back pain, x-rays for coughs, blood tests for anyone who dons the door of the ER. ”Tests for everyone!” shouts the bartender. “Tests are on the house! ”

I Was Told There Would Be No Math

May 5, 2013• 7

By Shirie Leng, MD

Someone has been listening to me. Or rather, to me and a growing number of voices that are questioning the requirements for admission to medical school. I have argued in a past blog that you won’t get more good primary care doctors, who practice a lot of humanities in addition to the science, if the only people you admit to medical school are scientists. Two medical schools and the American Association of Medical Colleges are beginning to agree.

Pauline Chen gives a good overview of what’s happening in this area here. Essentially, Boston University and the medical school at Mt. Sinai have made pretty radical efforts to apply either more than the traditional evaluation points to their admissions process, or different ones altogether. Mt. Sinai, in particular, has an extraordinary an early-acceptance program for college sophomores and juniors in which they can get into medical school without the MCATs, and without a few of the standard pre-med science and math requirements. In return, the accepted students have to continue to major in an humanities-related field and maintain an adequate GPA. They also have to undergo intensive science enrichment courses prior to matriculation. BU hasn’t gone quite that far, but they have included many more “holistic” data points into their admissions decisions, a process that is extremely labor intensive for the schools’ admissions staff.

Both schools have great ideas that are showing some promising results. I see a couple potential problems:

1. Mt. Sinai seems to be sort of cramming in all the old science requirements in off-hours, allowing students to pursue wider studies in college. I would rather see a larger decrease in the science and math requirements. Basic chemistry and biology are probably necessary, but no one has ever explained to me why you need physics. Or calculus. You don’t need most of this stuff in medical school. All you need in medical school is the ability to put your head down and push through the memorization. You don’t need math, you just need patience. The thing is, the only way to get rid of the math and science is to get rid of the MCAT, because believe you me you can’t get through that behemoth with an english major. Then, even if you do that, you eventually run into Step 1, the first of the three-part exam you take in medical school to pass medical school. The Mt Sinai kids might need more “enrichment” courses to get through that. If those hoops are eliminated, you might find some great doctors underneath those mountainous requirements.

USPSTF Backs Routine HIV Testing

May 5, 2013• 6

By Laura Newman

The U.S. Preventive Services Task Force formally published its recommendation for routine HIV testing for all individuals age 15 to 65 in the Annals of Internal Medicine this week. An editorial and patient materials are all available free to anyone with an Internet connection. Many people who work in HIV hoped that this would finally move HIV into mainstream medicine.

With a U.S. Preventive Services Task Force Recommendation, patients don’t need to ask for the test, it would become a routine blood test like many others, stigma would be reduced, and insurance would likely cover it. The evidence backs it. However, within 24 hours of the Task Force Recommendation going up online, the American Academy of Family Physicians questioned age 15 as the logical starting point, instead urging that testing begin at age 18. This is just some of the resistance that the medical community is putting forward now.

Several months ago, I spoke with Roger Chou, MD, MPH, associate professor of internal medicine at Oregon Health and Science University, Portland, Oregon, who headed the evidence review for the U.S. Preventive Services Task Force. “About 25% of people who have HIV and are not aware of it,” Chou said. “They have no identifiable risk factors.”

Other reasons why data to back routine HIV testing are in, include that “the screening test is highly accurate, we have direct evidence from randomized controlled trials that we can reduce the risk of transmission by 90%, and that you can’t trust what your patient says, , or that patients don’t always think that they are at risk,” said Chou.

Medicine in Denial

May 4, 2013• 55

By Leslie Kernisan, MD

“Any system of care that depends on the personal knowledge and analytic capabilities of physicians cannot be trusted.”

Finally, I’ve come across a really spot-on analysis of what ails healthcare, and some proposals that have serious potential to improve healthcare for people like my patients. Come to think of it, implementing these proposals would surely improve care for all patients.

The analysis, and the proposed fixes, are detailed by Dr. Lawrence Weed and his son Lincoln Weed, in their book “Medicine in Denial.” (The quote above is from this book.)

The book is a little long, but for those who are interested in leveraging technology to make healthcare more consistent and more patient-centered, I’d say it’s a must-read and must-discuss. (I’m a bit surprised that this book doesn’t seem to have many reviews, and that Dr. Weed’s ideas are not more often cited by those advocating for digital health and patient empowerment.) In particular, the Weeds’ book provides:

An excellent description and analysis of two huge fundamental problems in healthcare. One is the way we persist in relying on fallible physician minds to manage the process of evaluating, diagnosing, and managing medical problems. The other is our lack of standards for consistently documenting and organizing information related to our evaluation and management of patients. Both lead to idiosyncratic, disorganized healthcare that generally serves patients poorly, especially those who are medically complex or have multiple chronic conditions.
A proposed method of using computers and technology to consistently connect patient data to medical knowledge, leading to better diagnosis and medical management.

Peacefully Coexisting With the Valley of Death

May 4, 2013• 2

By Les Funtleyder

Recently, there has been an uptick in newsflow around the “series A crunch”/ “the valley of death” in regards to financing. Because of who we are (a firm that connects investors with private equity investments); we at Poliwogg see a lot of the “crunched” and “valley-dwellers.” We have some good news. The good news is that we are seeing increased interest on the part of accredited investors who have not invested in private companies before and who are now more open to the idea in light of lackluster returns in other asset classes. Aggregating this group of investors allows for investments in the range that are too large for a traditional “friends and family” round but are too small for traditional institutional investors where the crunch is most pronounced. The caveat is that companies need to be ready to meet the demands of this new crop of investors. Probably, what will be required will be more stringent than what companies have been asked for in the past. On the plus side in exchange for more requirements, these investors are often more patient and more passionate (especially in the disease categories) than traditional investors.

A few observations about what we are seeing (we view mostly healthcare companies):

• Asset prices seem fairer than they have been in a while especially when compared to the prices of similar assets in the public market; spurring investor interest.

• There do seem to be a large number of companies that raised seed rounds (sometimes in substantial sizes) from friends and family. That said given the lack of arms-length transactions the supporting documentation ( e.g. possessing an accountant and law firm, audited financials) often seems a bit lacking in our view and can make a more institutional looking round challenging if not impossible. More disclosure is always better.