I once made a serious error. The patient had taken an overdose of paracetamol, but because I was single-handedly covering three inpatient acute psychiatric wards due to sickness of two other trainees which medical HR had been unable to cover, with a lot of agency nurses who did not know any of the patients well at all, and also because this patient frequently said she had taken overdoses when she had not, and declined to let me take bloods to test for paracetamol levels, I believed she was crying wolf. She collapsed several hours later, and died. I was overwhelmed with feelings of guilt, inadequacy, but also fear – was this the end of my career? I was a trainee psychiatrist at the time – and was immensely fortunate in that my supervising consultant was robust in his defence of me, supported me, whilst fronting the complaint from the patient’s family and attending the inquest. He had been covering two outpatient clinics himself while I was on the ward.
The patient was only 26 years old. Her parents were very angry with me, and not unreasonably so; at the time, it seemed to me that they wanted me to suffer. Twenty years later, I believe they wanted to understand how I made the decision I did. Eventually, the consultant arranged for me to meet the parents. They were very kind to me, all of them, I realise that now. I wasn’t able to give them the answers they wanted. I just cried and said I was sorry.
The mother sent the consultant a letter afterwards which he gave me when I was about to complete that training placement. I did not read it for many months. When I did, I cried. The mother described her daughter’s childhood, the family’s loss, and her own incomprehension that the NHS – which she and generations of her family had venerated as a great institution – could have failed her child. It said very little about me, certainly didn’t seek to blame me, but said a few times that she wanted justice for her daughter. It was an exploration of grief by a bereft mother.
I often think about the mother – I cannot recall the face of the 26 year old patient – but remember perfectly well the mother, who said very little, didn’t even cry, leaving her husband to talk incoherently about justice and a referral to the GMC and the police (they did not do any of these things). And I often ponder the nature of justice they wanted. This was well before the advent of Duty of Candour and rigorously completed serious incident investigations.
Did they get justice? The coroner returned a verdict of suicide, but failed to acknowledge the systemic problems of lack of staff, merely noting that there had a “gap in clinical assessment”. It was not untrue, yet I experienced it as unfair. The consultant reminded me that I was fortunate that the family had not made more fuss. So I let it be. Until the case of Dr Bawa-Garba.
Imagine solving wicked problems of patient matching, consent, and a patient-centered longitudinal health record while also enabling a world of new healthcare services for patients and physicians to use. The long-awaited Notice of Proposed Rulemaking (NPRM) on information blocking from the Office of the National Coordinator for Health Information Technology (ONC) promises nothing less.
Having data automatically follow the patient is a laudable goal but difficult for reasons of privacy, security, and institutional workflow. The privacy issues are clear if you use surveillance as the mechanism to follow the patient. Do patients know they’re under surveillance? By whom? Is there one surveillance agency or are there dozens in real-world practice? Can a patient choose who does the surveillance and which health encounters, including behavioral health, social relationships, location, and finance are excluded from the surveillance?
The security issues are pretty obvious if one uses the National Institutes of Standards and Technology (NIST) definition of security versus privacy: Security breaches, as opposed to privacy breaches, are unintentional — typically the result of hacks or bugs in the system. Institutional workflow issues also pose a major difficulty due to the risk of taking responsibility for information coming into a practice from uncontrolled sources. Whose job is it to validate incoming information and potentially alter the workflow? Can this step be automated with acceptable risk?
It’s not hard to see how surveillance as the basis for health information sharing would be contentious and risk the trust that’s fundamental to both individual and public health. Nowhere is this more apparent than in the various legislative efforts currently underway to expand HIPAA to include behavioral health and social determinants of health, preempt state privacy laws, grant data brokers HIPAA Covered Entity status, and limit transparency of how personal data is privately used for “predictive analytics”, machine learning, and artificial intelligence.
One of Entrepreneur Magazine’s ’50 Most Daring Entrepreneurs of 2018,” Jen Horonjeff, talks about the unique business model behind her company, Savvy Cooperative. Called ‘the match.com of patient insights’ Savvy matches patients to healthcare companies for the purpose of providing real, consumer input on their products and services. How does it work? How did it become a TRUE co-op? (Yep, it’s owned by the patients!) Listen it to learn more.
Filmed at HIMSS 2019 in Orlando, Florida, February 2019
Jessica DaMassa is the host of the WTF Health show & stars in Health in 2 Point 00 with Matthew Holt.
Get a glimpse of the future of healthcare by meeting the people who are going to change it. Find more WTF Health interviews here or check out www.wtf.health.
By FELICIA D. GOODRUM STERLING, PhD and HEIDI L. POTTINGER, DrPH, MPH, MA
The measles outbreak in Washington state this week has brought new attention to the anti-vaccine movement. In fact, the World Health Organization recently identified “vaccine hesitancy” as one of top threats to global health. In the US, the number of unvaccinated children has quadrupled since 2001, enabling the resurgence of infectious diseases long-since controlled. In fact, the WHO claims a staggering 1.5 million deaths could be prevented worldwide by improved vaccination rates.
Amidst the media and public health outcry, a mystery persists: Why has vaccine hesitancy continued, despite years of vigorous debunking of shoddy science? The answer may lie in a deeply-rooted distrust of doctors and science.
One of the authors of this article, Dr. Pottinger, surveyed hundreds of Arizona parents, from schools with exemption rates greater than 10%, about their perceptions on vaccines. Pottinger and colleagues found the vast majority of the parents surveyed who delayed or chose not to vaccinate their children did so because of true personal beliefs and not convenience. Specifically, they tended to distrust physicians and information about vaccines or held misperceptions about health and disease, including the idea that immunity by natural infection is more effective or that vaccine-preventable diseases are not severe.
These beliefs, stoked by a fraudulent 2010 study, have proven almost impossible to shake—despite the fact that the debunked study, based on 12 children, was retracted due to serious ethical violations and scientific misrepresentation; authors cherry-picked and fabricated data, and the first author had undisclosed business interests in the vaccine industry.
On one hand, regulators are reluctant to limit private corporate action lest we reduce innovation and patient choice and promote moral hazards. On the other hand, a privatized marketplace for services requires transparency of costs and quality and a minimum of economic externalities that privatize profit and socialize costs.
For over two decades, the HIPAA law and regulations have dominated the way personal health data is used and abused to manipulate physician practice and increase costs. During these decades, digital technology has brought marvels of innovation and competition to markets as diverse as travel and publishing while healthcare technology is burning out physicians and driving patients to bankruptcy.
I pay $500 per year for UpToDate, the online reference that helps me stay current on diagnostic criteria and best treatment options for most diseases I might run into in my practice. They also have a rich library of patient information, which I often print out during office visits.
I don’t get any “credit” for doing that, but I do if I print the, often paltry, patient handouts built into my EMR. That was how the rules governing meaningful use of subsidized computer technology for medical offices were written.
If I describe in great detail in my office note how I motivated a patient to quit smoking but forgot to also check the box that smoking cessation education was provided, I look like a negligent doctor. My expensive EMR can’t extract that information from the text. Google, from my mobile device, can translate between languages and manages to send me ads based on words in my web searches.
When I do a diabetic foot exam, it doesn’t count for my quality metrics if I freetext it; I must use the right boxes. If I do it diligently on my iPad in eClinicalWorks, one of my EMRs, even if I use the clickboxes, it doesn’t carry over to the flowsheet or my report card.
Today’s opioid crisis is one of the most dire side effects driven by our dysfunctional U.S. healthcare system. A recent JAMA Surgery report found that many surgeons prescribe four times more opioids than their patients use. This opens the door for misuse and abuse later on. In fact, the total combined cost of misuse, abuse, dependence and overdose is about $78.5 billion.
Unfortunately, there’s a direct connection between the low-quality care many patients receive, and the astounding rates of opioid addiction. Often, insurance plans offer access to high-cost, volume-centric physicians and include high deductibles — creating an expensive cycle that doesn’t focus on patient outcomes. Instead of taking the time to figure out what is actually ailing a patient, these overworked and nearly burnt-out doctors get them in and out the door with a referral and a prescription for more pills than they could ever need.
What may surprise you is that employers play a large part in setting the stage for addiction. Millions of Americans get their health insurance from their employer, and a majority of those plans are fully-insured. To determine what insurance plan they offer, employers work with a benefits broker to purchase one from a carrier like Aetna or Cigna. Each year, employers and their broker join together for an annual dance — the broker tells them that healthcare costs are rising so their insurance rates have gone up, usually by 5-20 percent. The employers don’t know better than to accept these increases, filtering them down to employees in the form of higher premiums. Despite costs constantly going up, the quality of care does not follow. Continue reading…
Awareness about PD and its treatment and implications thereof are critical in ensuring reduced risks for this patient population. People with PD are very dependent on their medication, and timing of this medication is critical to maintaining good symptomatic control. In the outpatient setting, the main goal of medication management for these patients is to provide as much ON time as possible while minimizing side effects of the medications, such as dyskinesia. ON time describes a period of time when the medications are working and symptoms are controlled. Patients with advanced PD may have considerable difficulty with motor fluctuations if they transition from the ON state to an OFF state when the medication effect has worn off and they are symptomatic. The fine tuning of the medication regimen is pain-staking and often the result of multiple office visits and telephone calls to arrive at the best schedule customized for the patient. This can often result in seemingly unconventional timings (sometimes on the quarter after the hour) and at time q3 or even q2 intervals. Deviations from these regimens, even as little as 15 minutes delays, can have deleterious effects on patients with PD, as detailed above.
When patients with PD enter the hospital, attention is seldom paid to the exact timing of medication administration. If a patient takes a particular medication six times daily, ordering the medication six times daily in the hospital defaults to standard timings that often are different from the patients’ own regimen, causing timing errors. Almost 75% of PD patients who enter the hospital have delays in their medications and more than 60% of these patients can have complications during their hospitalization because of these delays.
By ARTHUR CAPLAN, KELLY MCBRIDE FOLKERS, and ANDREW MCFADYEN
A patient with glioblastoma recently received an experimental cancer vaccine at the University of California, Irvine. Notably, this is being hailed as the first case of someone utilizing the Right to Try Act of 2017. ERC-USA, a U.S. subsidiary of the Brussels-based pharmaceutical company Epitopoietic Research Corporation, says it provided its product, Gliovac, to the patient at no cost. The vaccine is currently undergoing Phase II clinical trials. A handful of people in Europe have received access to it through “compassionate use.” This patient did not qualify for ongoing clinical trials in the U.S. The patient, who remains anonymous, is the first known individual to receive an experimental medicine that has not been approved by the FDA, as permitted under the federal right to try law.
Glioblastoma is a nasty cancer – John McCain and Ted Kennedy passed away after battling the disease for just over a year. We believe that patients with terminal illnesses, like those with glioblastoma, should have every reasonable tool at their disposal to treat their disease.
That being said, we’ve argued before that right to try laws are not the best way to help desperate patients. They still aren’t. The number of cases claimed to date is exactly one. And, further examination of what we know about this case does not make a strong argument for the widespread usage of the right to try pathway.