More reports explore crowdfunding of dubious treatments – Consumer Health Digest

Disturbing news that it appears the market for dubious or outright fraudulent cures is now in friends asking friends to fund those treatments.

Two recent reports add to the literature on the use of crowdfunding platforms to support the pursuit of unproven treatments for serious health problems:

  • One research team looked at the largest crowdfunding platform (GoFundMe) and three other well-trafficked sites that permit medical crowdfunding (YouCaring, CrowdRise, and Fund Razr). The search terms they used were related to (a) homeopathy or naturopathy for cancer, (b) hyperbaric oxygen therapy (HBOT) for brain injury, (c) stem cell therapy for brain injury, and (d) spinal cord injury, and (e) long-term antibiotic therapy for “chronic Lyme disease”—all of which the researchers considered poorly supported and/or potentially dangerous. The study found that from Nov 1, 2015 through December 11, 2017, 1,059 campaigns had sought a total of $27.25 million and raised nearly $6.8 million. GoFundMe hosted 98% of the campaigns, YouCaring had 2%, and the others had none that met the researchers’ inclusion criteria. [Vox F and others. Medical crowdfunding for scientifically unsupported or potentially dangerous treatments. JAMA 320:1705-1706, 2018]
  • Another research team searched GoFundMe in June 2018 for campaigns that included the words “cancer” and variations on the word “homeopathy.” They found 220 unique campaigns with all but eight located in the United States and Canada. The campaigns, which mentioned 26 unproven interventions, requested nearly US $5.8 million and garnered pledges of more than $1.4 million. In addition to homeopathy, the most common methods were dietary changes such as juicing and organic foods (39% of campaigns). The other methods for which funding was sought by at least 10% of the campaigns were: (a) dietary supplements and herbal remedies, (b) vitamin C infusions, and (c) oxygen, ozone, and hyperbaric treatments. Unsubstantiated claims for the treatments sought were made in 29% of the campaigns. Among those seeking the treatments: (a) 38% wanted to try every available treatment and use it in addition to standard treatment; (b) 29% chose to forgo standard treatment because of fear of adverse effects or doubts about effectiveness, and (c) 31% could not pursue standard treatment for financial or medical reasons. At least 28% had died after their campaign began. [Snyder J, Caulfield T. Patients’ crowdfunding campaigns for alternative cancer treatments. Lancet Oncology. DOI:https://doi.org/10.1016/S1470-2045(18)30950-1, 2019]

Past issues of Consumer Health Digest have summarized the findings of studies of crowdfunding that involved cancer patients in the UKclaims that stem cell treatments were being offered through research studies, and claims that stem cell treatments had been proven effective.

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What A French Doctor’s Office Taught Me about Health Care – New York Times

I have found in my conversations with Americans that very few have any understanding of how bad American health care is compared to other industrialized countries. While it’s true that we have great medical professionals, the actual cost to deliver that care is much higher than other similar countries, the outcomes are much worse. Here is a ground level view of a real patient who fled America because of her inability to afford care, and what she found in France.

Taking Surprise Medical Bills to Court – NY Times

With a growing number of people being sent to collections here in Jefferson County by JHC, this article points out a very interesting issue of whether the “contract” between a patient (especially one coming into an E.R.) and the hospital is a legal and binding contract for billing purposes. Can you have a binding agreement if the client/consumer doesn’t know the price they are paying when they sign the consent agreement?

 

What if the Placebo Effect isn’t a trick? NY Times

The NY Times has a fascinating article on the latest research into the Placebo Effect. The Times does a good job of outlining the history of the Effect, including the beginning of modern science’s interest in it, with none other than Benjamin Franklin in the mix. The latest research helps paint a picture that if correct, could help us understand the interconnection between faith healing, eastern medicine, therapeutic touch, and western medicine. It also holds out the possibility of even making our drugs more effective. Read on…

 

Why Doctors Hate their Computers – New Yorker

Atul Gawande is one of the best writers today, writing on the subject of healthcare, end of life issues and modern medicine in general. You likely have heard him on NPR. Finally, he tackles the aggravation and lost promise of  electronic medical record systems (EMR).

EMRs have been viewed as a panacea by the medical community, primarily by politicians and government administrators lured by the promises of centralized control of medicine with rising costs of patient care, along with lawyers who are seeking to minimize risk of lawsuits. Add to that  hospital administrators, many of whom have never had to fill in a screen of medical data in their lives.

From the medical practitioners I’ve talked to about EMRs they are frustrated with the level of work they have had to do to keep up and the difficulty of finding useful information in the systems. Some patients have lost their lives due to EMRs, as specialized practitioners enter data that is not easily found, and when a patient is admitted to an ER room, often these instructions are lost to the ER techs. Or, to be more precise, they can’t take the time to find them in the mountains of screens. Yes, because of EMRs patients that otherwise may have lived are dead. Gawande alludes to this issue in his article.

Once, physicians could dictate and have the dictation sent to India overnight for translation. They’d have it the next morning. Or they wrote notes that were good enough and ended up in charts where they could be found quickly.

We are now in the worse of all worlds. EMRs are not automated enough to actually save practitioners time. Because of the use of EMRs, the expectations that medical providers can do the work faster and better mean that funding agencies drive providers to work faster and see more patients. A PA I know would spend two hours after seeing over 25 patients a day, before finishing the work of  filling out her EMR records. She was not reimbursed for this effort and she said it affected her home life as well. It’s a story I’m hearing from many practitioners.  At some point in the future dictation will be perfected and finding data that’s critical to patient care in an emergency will be easy to do. Until then, providers will continue to burn out and leave the system, just at a time when we need them more than ever.

We encounter, in Gawande’s article, an administrator who claims that the EMRs are not for the doctors but for the patients. While it’s true that patients use these systems a lot, (myself included) the results that most of us get are simply lab results and some easy to understand notes from our providers. That someone would think that the patient is the focus of all of this is misguided and shows a lack of understanding of systems.  The patient could just have easily have been given this information without the vast back end systems that affect every moment of provider time.  Think I’m wrong? It’s the backbone of every app you run on your smart phones. They are small and customer/consumer focused. We create these systems all the time. Requirements? Just listen to the customer. No need for thousands of hours of input meetings and lawyers.

It’s time to demand better EMR systems, focused on the needs of the providers and patients, not the hospital administrators, the lawyers, government and private insurers and the like. It can be done.

With all that said, Gawande’s article is the best thing I’ve read yet that gives a clear lay of the land of the frustration that physicians are feeling about EMRs. Take a read.

https://www.newyorker.com/magazine/2018/11/12/why-doctors-hate-their-computers/amp

 

 

 

On Doctor Burnout – NY Times

The NY Times magazine has a good short article on a subject that many of my friends in the medical profession talk about, burnout. The reasons documented in the story mirror their concerns, electronic medical records being among the most irritating. Many doctors and their support teams of Physician Assistants, Nurse Practitioners and others spend vast amounts of time before or after seeing patients documenting their work. It is a demoralizing let down for people who have spent years becoming highly specialized providers of care. It used to be that many physicians could dictate their notes, then send them via modem to India for overnight translation. No longer. Read about that issue and others.

 

 

Web site ads for stem cell treatments analyzed – Consumer Health Digest

The latest issue of Consumer Health Digest reports on a researcher who has identified 30 companies in Canada engaged in direct to consumer marketing of stem cells. Here’s an exerpt from the Consumer Health Digest.

Based on a series of Web searches, a researcher has identified 30 companies in Canada engaged in direct-to-consumer marketing of stem cell treatments offered at 43 distinct clinics in six provinces, with most located in Ontario. Her findings included:

  • Most of the companies advertised stem cell treatments only for orthopedic diseases and injuries, pain management, and sports-related injuries, but other companies offered treatments for cosmetic purposes, hair loss, neurological, aging, immunological diseases, muscular dystrophy, lung diseases, urological diseases, sex-related issues, and cardiac disease.
  • Sixteen of the companies disclosed no risks in Web ads, while the other 14 companies typically described only the possibility of short-term problems
  • Only two sites disclosed that serious risks were possible.
  • None provided information about long-term follow-up care.
  • Most companies advertised positive but unquantified claims, but five made explicit quantitative claims without links to supportive evidence.
  • Most of the companies did not disclose what they charge for their procedures. [Turner L. Direct-to-consumer marketing of stem cell interventions by Canadian businesses. Regenerative Medicine. Epub ahead of print, Sept 26, 2018]

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