There is a growing group of articulate and engaged patients committed to getting access to all their medical information in order to be better positioned to work collaboratively with their clinical teams. Published studies like the OpenNotes project have consistently shown significant benefits and a lack of serious problems. Health care systems are slow to change and just beginning to understand both the need and value to this more transparent and collaborative approach.
My institution, for example, is not ready (or even interested) in anything approaching opening chart notes to patients. In fact, although our secure portal will be launched in the near future, there was some resistance to making even problem lists, medication lists, lab and x-rays available through the portal.
That need not prevent individuals from contributing to change. A few years ago I began providing every patient with a copy of their office visit note as they left the office after their visit. The intent was for us to do the assessment and plan collaboratively and make sure they have a copy of our (collaborative) plan. Patients have been very appreciative, and use it to share the assessment and plan with family and consultants, and as a reference. A few bring it back at the next visit with notes on it about what they did and what happened.
To the objectors who say that one cannot be honest in a note if the patient is going to see it, I say: balderdash. (Actually, what I say is much stronger…) For one thing (the smaller point) the patient is already allowed to see it if they but ask. More importantly, this argument depends entirely on the principle that the clinician knows best and needs to keep secrets in the interest of the patient. What I have experienced is a variation on the advice I got many years ago regarding relationships: if it’s important, then it’s important enough to be open about and deal with. If you aren’t willing to deal with it openly, you are not allowed to save it up and spring it on your partner (patient) later.
Continue reading “An Open Note to Open Notes Objectors”
Filed Under: Tech, THCB
Tagged: Charting, doctor/ patient relationship, Electronic Health Record, Open Notes, Peter Elias, Transparency
Jul 18, 2014
Recently the Centers for Medicare and Medicaid (CMS) made troves of data publically available. CMS released data on hospital charges, physician utilization, in addition to other data sets. Journalists and academics were excited to potentially confirm their theories on healthcare spending.
We at The Engelberg Center hosted an event, Hacking America’s Health where experts from the Brookings Institution and the government spoke to participants regarding the impacts of data transparency on the nation’s healthcare system. The purpose of the festival is to focus on “innovators from around the world and their transformative solutions to global challenges.”
Out of this discussion emerged a consensus that data transparency could spur disruptive innovation in the health sector but overcoming several key barriers was essential to maximizing the benefits to the public.
Benefits of Data Transparency
1. Help Consumers Make Informed Decisions
Open data offers numerous benefits to consumers. The CMS data unveils the enormous variation in the cost of different treatments. Enabling consumers to find high value care providers improves the efficiency of the market. Price transparency can also uncover providers that charge unusually high prices and puts pressure on them to lower those charges. Finally utilization can reveal if a doctor uses a rare treatment with regularity. All of these data empower health care consumers to choose wisely.
2. Identify Vulnerable Patients
CMS has used open data for numerous projects to help patients. One project involves collaboration with local and state governments. Using Medicare claims information they identified specific patients who could be in special danger in the aftermath of a natural disaster. Without electricity it’s impossible to operate a lifesaving device like a ventilator or nebulizer. The claims data allows emergency officials to notify such individuals about the locations of shelters.
3. Data Mashups
Combining together data sets could help identify bad actors in the health system. For example merging data from the Sunshine Act which describe payments and items given to physicians combined together with utilization data from CMS. This could identify doctors who were using a drug or procedure due to a financial relationship rather than best practice. Other data mashups could also uncover unexpected patterns.
Continue reading “Upgrading the Value of Data Transparency in the Health Sector”
Filed Under: Uncategorized
Tagged: CMS, Darshak Sanghavi, Hacking America, Health Data, Informed Decision Making, Joshua Bleiberg, Transparency
Jun 2, 2014
Many years before the creation of Healthcare.gov, President Obama embraced data analytics during his early years in the Senate.
In 2006, he and senator Tom Coburn (R-Okla.) successfully sponsored the Federal Funding Accountability and Transparency Act, which resulted in creation of usaspending .gov, “a significant tool that makes it much easier to hold elected officials accountable for the way taxpayer money is spent“.
A History of Failed Federal IT Projects
A considerable amount of taxpayer money is spent on federal IT projects, but in contrast to the aspirations of Obama in his early years in the Senate, it is not spent responsibly.
According to the Standish Group report, from 2003 to 2012 only 6% of the federal IT projects with over 10 million dollars of labor cost were successful.
52% of them were either delayed, went over budget or did not meet user expectations. The remaining 41% of the IT projects were abandoned or started from scratch. Perhaps most troubling is that healthcare.gov is just a one example among many.
Continue reading “Healthcare.gov and the History of Failed IT Projects”
Filed Under: Tech, THCB
Tagged: Accenture, CGI, Deloitte, federal contracting, Healthcare.gov, HIT, Niam Yaraghi, Transparency
Apr 3, 2014
The conversation has changed.
The old conversation: “You cost too much.”
“But we have these sunk costs, patients who can’t pay … ”
“OK, how about a little less then?”
The new conversation: “You cost too much. We will pay half, or a third, of what you are asking. Or we will take our business elsewhere. Starting now.”
“But … but … how?”
Exactly: How will you survive on a lot less money? What are the strategies that turn “impossible” to “not impossible”?
The old conversation arises from the classic U.S. health care model: a fully insured fee-for-service system with zero price transparency, where the true costs of any particular service are unknown even to the provider. The overwhelmingly massive congeries of disjointed pieces that we absurdly call our health care “system” rides on only the loosest general relationship between costs and reimbursements.
It’s a messy system littered with black boxes labeled “Something Happens Here,” full of little hand waves and “These are not the droids you’re looking for.”
With bundling, medical tourism, mandated transparency, consumer price shopping, and reference pricing by employers and health plans, we increasingly are being forced to name a price and compete on it. Suddenly, we must be orders of magnitude more precise about where our money comes from and where it goes: revenues and costs.
We must find ways to discover how each part of the strategy affects others. And we need some ability to forecast how outside forces (new competition, new payment strategies by employers and health plans, new customer handling technologies) will affect our strategy.
Key Strategy Questions
For decades, whenever some path to profit in health care has arisen (in vitro fertilization, urgent care, retail, wellness and the others) most hospitals have said as if by ritual, “That is not the business we are in.” As long as we got paid for waste, few health care organizations got serious about rooting it out.
And most have seemed content with business structures that put many costs and many sources of revenue beyond their control.
In the Next Health Care, the key strategy questions become:
Filed Under: THCB, The Business of Health Care
Tagged: consumer driven health, Costs, Employers, Healthcare organizations, Joe Flower, Reference-based pricing, the business of healthcare, Transparency
Mar 28, 2014
In a recent column, security expert Bruce Schneier proposed breaking up the NSA – handing its offensive capabilities work to US Cyber Command and its law enforcement work to the FBI, and terminating its programme of attacking internet security.
In place of this, Schneier proposed that “instead of working to deliberately weaken security for everyone, the NSA should work to improve security for everyone.” This is a profoundly good idea for reasons that may not be obvious at first blush.
People who worry about security and freedom on the internet have long struggled with the problem of communicating the urgent stakes to the wider public. We speak in jargon that’s a jumble of mixed metaphors – viruses, malware, trojans, zero days, exploits, vulnerabilities, RATs – that are the striated fossil remains of successive efforts to come to grips with the issue.
When we do manage to make people alarmed about the stakes, we have very little comfort to offer them, because Internet security isn’t something individuals can solve.
I remember well the day this all hit home for me. It was nearly exactly a year ago, and I was out on tour with my novel Homeland, which tells the story of a group of young people who come into possession of a large trove of government leaks that detail a series of illegal programmes through which supposedly democratic governments spy on people by compromising their computers.
I kicked the tour off at the gorgeous, daring Seattle Public Library main branch, in a hi-tech auditorium to an audience of 21st-century dwellers in one of the technology revolution’s hotspots, home of Microsoft and Starbucks (an unsung technology story – the coffee chain is basically an IT shop that uses technology to manage and deploy coffee around the world).
I explained the book’s premise, and then talked about how this stuff works in the real world. I laid out a parade of awfuls, including a demonstrated attack that hijacked implanted defibrillators from 10 metres’ distance and caused them to compromise other defibrillators that came into range, implanting an instruction to deliver lethal shocks at a certain time in the future.
Continue reading “Computer Security as an Exercise in Public Health”
Filed Under: THCB
Tagged: Computer Security, Hacking, Information-Sharing, NSA, public health, Transparency
Mar 17, 2014
It’s 8.30 am, just before clinic opens. It is 2010. Dr Byte* checks an online forum, and something catches his eye.
A female patient is complaining about a doctor. Her posting has led to strident reactions from other doctors. Patients are taking her side. It looks ugly.
It turns out that the patient had asked her family doctor whether she could use her smartphone to record the encounter. Her doctor was apparently taken aback and had paused to gather his thoughts. He asked the patient to put her smartphone away, saying that it was not the policy of the clinic to allow patients to take recordings.
The patient described how the mood of the meeting shifted. Initially jovial, the doctor had become defensive. She complied and turned off her smartphone.
The patient wrote that as soon as the smartphone was turned off the doctor raised his voice and berated her for making the request, saying that the use of a recording device would betray the fundamental trust that is the basis of a good patient-doctor relationship.
The patient wrote that she tried to reason, explaining that the recording would be useful to her and her family. But the doctor shouted at her, asking her to leave immediately and find another doctor.
Some participants on the online forum expressed disbelief. But the patient then went on to state that she could prove that this had actually happened, because she actually had a recording of the encounter. Although she had turned off her smartphone, she had a second recording device in her pocket, turned on, that had captured every word.
Continue reading “Patientgate: Why Patient Recordings Will Change Everything”
Filed Under: Tech, THCB, The Vault
Tagged: doctor/patient communication, Glyn Elwyn, Privacy, shared decision making, Transparency, UK Data Protection Act, Wellness
Mar 13, 2014
Since HIPAA entitles virtually all patients to obtain copies of their complete medical records at any time, it is always best to write notes with the assumption that patients may read them.
However, as electronic portals provide patients with easy access to their records, clinicians may feel new pressure to be more mindful about how they write their notes. They may alter their approach to or even omit sensitive information to avoid worrying patients unnecessarily. They may try to balance clinical and non-technical language to avoid confusing patients; they may feel they need more time to write notes that patients can read.
They may be concerned about how patients might choose to share their notes, including posting a clinician’s note on Facebook, medical forums, or other social media.
Most doctors in the OpenNotes study found that they generally didn’t need to change how they wrote their notes. Patients did not expect doctors to write notes aimed specifically at them and were grateful simply to have a window into their medical record.
However, a minority of doctors reported that they changed how they documented potentially sensitive topics. These included mental health, obesity, substance abuse, sexual history, elder, child or spousal abuse, driving privileges, or suspicions of life-threatening illness. These are not new dilemmas, but they gain urgency in an era of shared visit notes.
Unless you believe a conversation might harm your patient, a good rule of thumb is to write about things you discussed with your patients (and conversely, to talk about content you will write about). Many clinicians already follow this practice, and some choose to dictate notes with their patients present.
When documenting sensitive behavioral health issues, we recommend trying to describe behaviors descriptively, rather than labeling them or suggesting judgments. We also suggest highlighting the patient’s strengths and achievements alongside his/her clinical problems. This can help the patient gain a broader context within which to consider his or her illness and tackle difficult behavioral changes.
Continue reading “The Open Notes Toolkit: Writing Fully Transparent Notes”
Filed Under: Uncategorized
Tagged: OpenNotes, personal health records, RWJF, Transparency
Mar 10, 2014
As the fashionistas might say, transparency in health care is having a moment. It made the PricewaterhouseCoopers top 10 list for 2014 industry issues, and there is every reason to expect transparency to be very visible this year and beyond.
Without a doubt, transparency is hot.
Despite this, there is increasing grumbling by observers who say that transparency is complicated and hard to operationalize. We also hear that transparency is “not enough” to constrain costs in our dysfunctional system, especially in the face of provider market power.
The word itself invites skepticism, in that it seems to over-simplify and promise a magical solution, as if daylight will provide health care pricing with a glow of rationality.
As usual, the truth lies somewhere in the middle. Transparency can and will provide information about price, quality, and consumer experience that market participants need in order to better understand the health care system and increase its value.
While this information is surely necessary, we have seen many examples of when it is not sufficient. Clearly, transparency is not the only tool that we need.
Here are a few thoughts about transparency issues for 2014.
Transparency tools will hit Main Street.
Increasingly, consumer-facing tools with various kinds information about health care prices are being created, whether it is okcopay or Change Healthcare. These entries join a growing list of transparency tools from carriers or third-party vendors.
The Robert Wood Johnson Foundation’s Hospital Price Transparency challenge, designed to promote awareness of hospital charge data, had a record number of entrant and the winning submissions are downright inspiring. RWJF also awarded grants for research on the use of price data in health care, including a number of studies of promising transparency tools aimed at consumers and providers.
The field is becoming more crowded, and it is increasingly important to determine the optimal way to reach the consumer with price and quality information.
There will be greater focus on the customer experience.
There is no doubt that the customer experience in health care lags behind the rest of the service sector, and consumers are increasingly demanding responsiveness and convenience in their encounters with the medical profession. The growth of evening and weekend hours, email communications with physicians, and patient portals are all harbingers of a new age where medicine is far more customer friendly.
RWJF’s Open Notes initiative allows patients to share notes with their doctors, while the Foundation’s Flip the Clinic program completely reimagines the doctor patient encounter in the ambulatory care setting.
Continue reading “Transparency a Go Go?”
Filed Under: Uncategorized
Tagged: Chargemaster, Choosing Wisely, consumer driven health, Hospitals, Katherine Hempstead, OpenNotes, RWJF, Transparency, value-based care
Feb 28, 2014
The Obama administration announced significant adoption for the Blue Button in the private sector on Friday.
In a post at the White House Office of Science and Technology blog, Nick Sinai, U.S. deputy chief technology officer and Adam Dole, a Presidential Innovation Fellow at the U.S. Department of Health and Human Services, listed major pharmacies and retailers joining the Blue Button initiative, which enables people to download a personal health record in an open, machine-readable electronic format:
“These commitments from some of the Nation’s largest retail pharmacy chains and associations promise to provide a growing number of patients with easy and secure access to their own personal pharmacy prescription history and allow them to check their medication history for accuracy, access prescription lists from multiple doctors, and securely share this information with their healthcare providers,” they wrote.
“As companies move towards standard formats and the ability to securely transmit this information electronically, Americans will be able to use their pharmacy records with new innovative software applications and services that can improve medication adherence, reduce dosing errors, prevent adverse drug interactions, and save lives.”
While I referred to the Blue Button obliquely at ReadWrite almost two years ago and in many other stories, I can’t help but wish that I’d finished my feature for Radar a year ago and written up a full analytical report.
Extending access to a downloadable personal health record to millions of Americans has been an important, steady shift that has largely gone unappreciated, despite reporting like Ina Fried’s regarding veterans getting downloadable health information.
According to the Office of the National Coordinator for Health IT, “more than 5.4 million veterans have now downloaded their Blue Button data and more than 500 companies and organizations in the private-sector have pledged to support it.”
Continue reading “The Pharmacies and Retailers Say They’re In. Is the Blue Button Initiative About to Change Everything?”
Filed Under: THCB
Tagged: Alex Howard, Blue Button, Blue Button initiative, HHS, HIT, ONC, open data, personal health records, Transparency
Feb 11, 2014
“‘Let’s go.’ ‘We can’t.’ ‘Why not?’ ‘We’re waiting for Godot.’” ― Samuel Beckett
For the economists in our midst, demand is a critical but pretty dry idea: the quantity of a good or service a buyer is willing to purchase at a given price. It’s presumed to be part of working health care markets.
It’s one of the first things an undergraduate might learn in Econ 100.
There’s no urgency in this demand; it just is.
Of course, nothing—even general economic principles—is simple in health care. Still, you can look longingly at a few nice supply and demand curves and dream about how things might be—if only.
If only health care consumers picked up their role and skittered up and down those demand curves.
If only they helped us find those elusive market equilibriums for this health care service or that. For some time, lots of people have seen that enormous and powerful potential—and drooled over it.
We’ve been waiting a long time for our consumer to show up in health care. We’ve been waiting for the consumer to obtain and use the information she needs to demand great care.
We’ve been waiting for lots of consumers to do that over and over to help us out of our unfortunate health care jam.
It’s that jam where we pay too much for lots of care of marginal quality riddled with safety problems and delivered by a bunch of dissatisfied, demoralized health professionals.
Indeed we have been waiting a long time for our health care consumer. Certainly, there have been and continue to be countless reasons why consumers haven’t arrived to help save us.
“Health care is different!”
“There’s no evidence that consumers will behave like normal consumers in health care!”
Continue reading “An Urgent Request”
Filed Under: Health 2.0
Tagged: consumer driven health, HCI3, INQUIREhealthcare, Michael Painter, Transparency
Feb 5, 2014