Multiple integrative oncologists question whether JAMA Oncology did the public a huge disservice in publishing the controversial data-mining, population-based research led by Skyler Johnson, MD and James Yu, MD, MHS. The study concluded that use of complementary therapies leads to shorter life spans. The New York Times was among the major media that posted the scare.
In an interview on the subject, Lynda Balneaves, RN, PhD, the president of the Society for Integrative Oncology, put the blame for what she considered poor science with serious “misclassification errors” and other problems, placed the blame on a lack of collegiality. Concluded Balneaves: “Honestly, this has disappointed me. It’s too bad that the authors didn’t just connect with researchers knowledgeable in integrative oncology before doing this work. There are a lot of us out there. We need more of the kind of understanding that a paper like this could provide. But we’ve got to get the questions and methodology right.”
I decided to foster collegiality and connected with the Johnson and Yu via email to seek to strike up a dialogue. I opened opportunity for an interview prior to publication. Because the ultimate goal is collegiality, I also suggested fostering direct dialogue by bringing Scott Mist, PhD, MAcOM, MS, MA, LAc, the statistician I’d interviewed, onto a call for a direct exchange.
While I received a brief reply, and heard expressed interest in future collaboration “with members of the integrative oncology community to test these findings prospectively,” the authors did not believe that the challenges merited response. Here is that dialogue – begun late on a Friday, PDT, after close of day EDT. The initial response from Johnson, while minimal, was timely, and came Monday morning,
Weeks (081018, 2:29 PM PDT): Dear Dr. Johnson – I am a member of the media who has been covering – and involved with developments in alt-cm-integrative world for 35 year. I have written for publications such as Huffington Post, Health Forum Journal, Medical Economics, etc. and verbally reported my work at Harvard, George Washington University, Yale, Stanford, UCLA, Duke and elsewhere. More on me is at www.johnweeks-integrator.com
Therefore you will not be surprised at my interest in your recent publication in JAMA Oncology. I began connecting with SIO leaders, and ONCANP for perspectives (including Heather Wright, who shared your correspondence). One suggested I get a stats review, given the oddness in the numbers. I did so, from Scott Mist, PhD, MAcOM, MS, MA, LAc. Mist is an assistant professor for anesthesiology and perioperative medicine [at] the Oregon Health Sciences University School of Medicine. He also serves as the associate editor for statistics at JACM – Paradigm, Practice and Policy Advancing Integrative Health (The Journal of Alternative and Complementary Medicine) where I contribute as editor-in-chief. He sent me back the document with the 8 bullet points below. [Note: MIst’s document is appended here.] I would like you to have a chance to respond to these comments from Mist, which I plan [to] publish as is.
I am planning a feature with a variety of materials on this that I will publish through my Integrator Blog News & Reports on Wednesday, August 15 – with specific pieces then re-published on multiple sites. I will subsequently be writing a column that will be part of the JACM Special Focus Issue on Integrative Oncology that will be a double issue published in September prior to the October SIO meeting. Lynda Balneaves, RN, PhD, the president of the SIO, is a guest co-editor of the issue. I have also interviewed her and Dr. Donald Abrams at UCSF, some [naturopathic] oncology specialists, and a leading consumer voice, on this piece. While I would like you to have a chance to respond before the Wednesday publication, I will particularly want to provide your rebuttal for the scientists worldwide who are our readers there. JACM, at 23 years of age, is read in 170 countries and is the longest running peer-reviewed and indexed journal in the field.
I would be happy to schedule an interview if that would be your preferable means of being heard. I am in Seattle and will prioritize what time you can be available. Please let me know that you have received this. If it would be good to get Dr. Mist on the call, that might be arranged. Thank you in advance for your time. – John [For the full memo from Mist, see the addendum to this article.]
Weeks (081118, 3:42 PM PDT) Hello Dr. Johnson – I wanted to make sure you received this [re-sending the above]. Perhaps you are enjoying a weekend away from work — John
Weeks to Yu with Johnson cc-ed: (081218, 9:06 AM PDT) Dear [Dr.] Yu — I sent this [the above] to your colleague Dr. Johnson at the close of your day Friday. I wanted to make sure I reached at least one of you before I need to publish on Wednesday. See below. I KNOW that it is the weekend, and suspect that either or both of you might check emails over the weekend, despite it being August and the calls of summer — John
Johnson (081318, 10:49 AM PDT, received by Weeks): Dear John – Thanks for reaching out. I’m a huge proponent of critical analysis of scientific work. The co-authors and I believe that these results strengthen the position of alternative practitioners and integrative oncologists, who recommend evidence based practices for cancer patients, by encouraging treatment adherence to proven therapies while seeking to improve patient quality of life. We would love to work with members of the integrative oncology community to test these findings prospectively.
Regarding critiques to the paper and statistics, we clearly discussed the limitations of the data, analysis and interpretation thereof, and I have copied that information for your reference below:
‘[From the paper]: Our work demonstrates that complementary medicine and alternative medicine likely represent entities along a continuum, rather than being distinct entities. Though we consider complementary (or integrative) medicine to integrate unproven non-medical methods with conventional therapies, and alternative medicine as the use of unproven methods instead of conventional therapies,1 our work demonstrates that patients who undergo alternative medicine and complementary medicine are often behaving similarly in refusing treatment. As a result, like the alternative medicine patients2 (who do not undergo any initial conventional cancer therapy), CM patients are also placing themselves in an unnecessarily greater risk of death by refusing some conventional cancer therapy.
Our analysis is limited by its retrospective and observational nature. The use of CM was likely underascertained given patients’ hesitancy to report use to providers and for database registrars to code this reliably. However, this was likely a highly specific variable, which includes only those who actually received one or more CMs. Additionally, it is possible that providers were more likely to document the use of CM when patients were using noteworthy therapies that may have resulted in refusal in conventional cancer therapies. There are inherit limitations in retrospective large data collection such as treatment facility selection bias, which may exist as only CoC-accredited hospitals contribute data to the NCDB, although the NCDB still captures 70% of newly diagnosed malignancies and the NCDB has extensive quality-assurance mechanisms in place to ensure correct data capture. Consistent with this, we observed that assignment of CM differed significantly by facility. We attempted to account for this variability by clustering by the reporting facility. Other limitations to the data include unmeasured confounders that could impact survival including lack of data about aversion to cancer screening, refusal of treatment of non-cancer related comorbidites, body mass index, smoking history, burden of disease, functional status, individual income and education, details about incomplete or dose-reduced treatments and cancer-specific survival. Since patients receiving CM were more likely to be female, younger, more affluent, well-educated, privately insured and healthier, we hypothesize that our sample was biased in favor of greater survival for patients who underwent CM (vs. no CM). Treatment toxicity is not available within the NCDB, and any potential benefits of a treatment modality should be weighed against the possibility of harm and include patient preferences. Lastly, the absence of information regarding the type and total number of CM delivered is a limitation. Types of CM previously identified include herbs/botanicals, vitamins and minerals, probiotics, Ayurvedic medicine traditional Chinese medicine, homeopathy and naturopathy, deep breathing, yoga, Tai Chi, Qi Gong, acupuncture, chiropractic or osteopathic manipulation, meditation, massage, prayer, special diets, progressive relaxation, and/or guided imagery.3 Therefore, we cannot comment on specific type of CM and its relationship to survival. Regardless, except for those mind-body therapies that have been shown to improve quality-of-life,4 there is limited to no evidence that these therapies have been shown to improve cancer survival as a CM.’
Thanks and best of luck with your work, – Skyler
Weeks (081318, 11:49 AM PDT): Dr. Johnson (and Dr. Yu) – Thank you very much for your response. While you did indeed discuss the limitations, the two components of the misclassification bias would seem to me too overwhelming to simply dismiss as you have here – thus creating the widespread message that complementary medicine kills. (The New York Times subheading was representative: “People who used herbs, acupuncture and other complementary treatments tended to die earlier than those who didn’t.”)
I will circulate your limited response to Dr. Balneaves and Dr. Mist for their thoughts. I like seeing your expressed interest: “We would love to work with members of the integrative oncology community to test these findings prospectively.” I would urge you to begin that more, now, by realizing what significant [mis-perception] in the public you and your team have created by not having spoken with experts prior to your retrospective analysis, leading to these damning misclassification errors. I will share additional questions from these two if they have any. Here’s to increase interprofessional respect and collaboration – now, and in the future. – John
Johnson and Yu: [Did not respond to this follow-up note.]
Mist (statistician, responding to Weeks regarding Johnson’s few comments, 081418, 7:32 PM PDT): At this point, I don’t have anything additional to add or ask. If he had specific answers to the questions then I would want to see them and see if there are follow up questions. Otherwise, that is all I have.
Balneaves (SIO president, responding to Weeks on Johnson’s few comments, 081418, 8:32 PM PDT): [The authors] write: “Though we consider complementary (or integrative) medicine to integrate unproven non-medical methods with conventional therapies…” First follow-up would be that they have used an inaccurate definition of integrative medicine as per SIO definition recently published by Witt et al. (2018), in which integrative medicine does not utilize “unproven” interventions. They must be evidence-based. As such, they have an inaccurate interpretation of integrative oncology. Further to this, the very definition of complementary and alternative medicine means that patients DO NOT behave similarly, as they state. They either use them in conjunction with medical therapies, are they use them instead. So they continue to use inappropriate terminology and misclassify individuals. Complementary therapy patients by the very definition of “Complementary” do not refuse treatment!
And there is no “likely” in the fact that they under ascertained complementary therapy use – every survey in the past 20 years has demonstrated that between 30-80 percent of cancer patients use some form of CM. As a result, their sample is not representative of the population they are generalizing to. Instead, it’s likely they captured the alternative medicine clients only, which are between 3-6% of cancer populations. As such, they are making incorrect generalizations.
Further, I would love for them to address the theoretical plausibility of how some CM therapies identified, such as deep breathing, tai chi, etc are linked to “greater risk of death”? There was no nuanced analysis conducted to separate out alternative therapies from supportive care interventions. Given their very small sample, this would not have been that difficult.
Comment: If conventional oncology was not frequently such a devastating killing you so you can live process, there would be no need for complementary therapies. There would be no patients suffering with adverse effects from treatment of physicians who believe their concerns go no further than the cutting, burning, and breaking down with toxins of their core treatments. But the killing characteristics of conventional oncology – such as the radiation administered by Johnson and Yu – are powerful. Need arose. Patients began seeking tools and care that would help them out, complementing the conventional treatment by finding ways to do what Johnson and Yu and their conventionally-practicing colleagues fail to do. The field of integrative oncology was born and nurtured by practitioners who believe their responsibilities include using such complementary therapies and practitioners to assist with the damage they wreak.
There is a fascinating parallel here, in this non-response. Neither Johnson non Yu deigned to dignify the collegial arguments of Mist, Balneaves, Abrams and the Oncology Association of Naturopathic Physicians with respectful collegial response. Without such a response, the challenges stand. And meantime, the damage wreaked in the media and public perception on the option of complementary therapies by the extractive work of these radiation oncologists goes unaddressed. Is it too much to suppose that they are accustomed to living with collateral damage? Here’s to an era of actual collegial respect.