Kent Bottles MD is one of the best healthcare thinkers I’ve met. Yesterday he completed a two-part tour de force on The Health Care blog titled “The Difficult Science.” Here are part 1 and part 2.
This is about “how do we know what we think we know – and what the heck can we do with this uncertainty??” It starts with a real-world conundrum:
On the same day in November, headlines from the Wall Street Journal and the New York Times reported on the same story.
“Triple That Vitamin D Intake, Panel Prescribes” [said] the WSJ story; “Extra Vitamin D and Calcium Aren’t Necessary, Report Says” stated the New York Times. (Discussion on Freakonomics)
How should you decide what advice to follow about the relationship between your diet, lifestyle, medications, health, and wellness?
Is this just another example of how the media does a terrible job? … It turns out that it is really complicated to figure out what the “truth” is about diet, exercise, medicines, and your individual well being. Everybody (journalists, government panel members, scientists, patients, physicians, and nurse practitioners) needs to change.
He goes on to detail, thoughtfully, his recommendations for each of those fields. It’s a long read, because the truth here isn’t simple. Well worth it.
Related material –
Kent’s posts here include Why I Joined the Society for Participatory Medicine and The Ideal Doctor-Patient Relationship. The latter asks, “Can Doctors Ever Know What Will Benefit the Patient?” This is a core question in the field of SDM (shared decision making), because patients often ask doctors “What would you do, if you were me?”
Take a fresh look, too, at this short Susannah Fox post from 12/1/09:
Inviting Controversy: David Eddy at ICSI
David Eddy did nothing to reassure Kent Bottles about evidence-based guidelines in his recent keynote, saying essentially: “The problem is that we don’t know what we are doing” (!!)
That second link is a Bloomberg Business post from May 2006(!) with a reportedly mind-blowing ten minute presentation at Kaiser showing that the conventional treatments for diabetes do not work at preventing complications, and simpler things do.
Sure wish I could see that presentation – blowing minds and changing an org the size of Kaiser is a neat trick in ten minutes!
Kent Bottles’s posts are very entertaining and interesting. But, even though he writes about the benefits of patient empowerment, I think he has missed a great opportunity to close one of the most important loops in the conversations about the real value of Participatory Medicine: the central role of the patient/caregiver as filter of information.
Patients are not just misled by the media, themselves and their friends. First and foremost, they are often misled by the professionals that were supposed to know the answers. If there is one conclusion that I took from working on the e-Patients white paper it is that doctors have a much more limited understanding of the disease process than the system has made us all believe. The greatest role of the Internet has been to surface that very inconvenient truth. Once we were made aware of this limitation, instead of trying to change that reality (impossible!) those of us who got involved early just designed systems to circumvent that problem. It has worked wonders. Without mentions of social media or any buzzword.
In his second post Kent writes:
Note that there is no mention of the explosion of research and published data. And note that there is no mention of the inconvenient fact, described by Richard Smith in 2004, while he was still Editor-in-Chief of the BMJ: “Doctors are not Scientists“.
These 2 additional elements, associated with everything else that Dave has been writing during and after he participated in the Salzburg meeting explain why patients suffering from serious diseases should assume at best a “trust but verify” attitude, whenever they are given advice by a physician they don’t know well. And any hint of a mistake in diagnosis or lack of awareness of existing approved and experimental treatments on the part of a provider should be dealt head-on, as is normal in a relationship between equals. The Internet, properly used, does provide, regardless of the opinion of nay-sayers, the tools that make possible this verification process.
Let me repeat what I said earlier. The system and most doctors vastly underestimate the central role of the patient/caregiver as filter of information. Just like Dave said “Won’t it be ironic if *we* end up being the stewards of quality control in healthcare? After all the guff we’ve been given by those lesser docs who say “Look, who’s got the medical degree here?” This is what ACOR members have been doing, together with millions of members of thousands of other online communities for almost a generation!
Real engagement of networked patients is not new and didn’t wait for Facebook or Twitter to exist. Quietly, under the radar, very significant percentages of finite populations dealing with orphan diseases have been taking the reins of optimal care in their own hands.
I agree that there is a gap in one of the most important loops in the conversation. There is a need for a dialogue between traditional and integrative medical professionals as well as the patient. Have you read about the healthcare conference being held in Atlanta that is intended to do just this? Dr. Pamela Wible will be speaking on the first day. Dr. Wible asked her community to design the type of healthcare practice they wanted and then she built her practice using the notes of hundreds of patients given to her at a town hall meeting she held. The name of this event is One Path Summit and is March 26th and 27th. I am very excited to hear from all the practitioners they have lined up to speak. It is time that patients join their medical practitioners to obtain optimal health for themselves and their communities.
I am living with carcinoid and I have learned more about this cancer and it’s treatment or lack thereof from reading and posting on ACOR. Others with this cancer are very well informed and share their experience, love,and hope as well at what has worked or is working for them.
There is a doctor who is one of a few experts in the field of care of patients with carcinoid who shares on a daily basis on the ACOR web site. How unselfish is this? He helps so many with his knowledge, caring and sense of humor. I commend this doctor and all the people who share their strength and knowledge. Most of them do not have medical degrees but have empowered themselves by reading, attending conferences on carcinoid and provoking their doctors to learn more about this cancer and therefore, render the proper care, follow-up and when necessary, advice re. the fact that a lot of us will succumb to this cancer.
I respect those doctors out there who tell the truth about our cancer, and when there is nothing else to do, help us accept with dignity and this allows us to have peace of mind and not flounder in those deep, chilly waters of the unknown.
I thank all who help me walk this road and live in the now.