LYMEPOLICYWONK: Patient-Powered Research and Lyme Disease
Many of you know that I am a patient representative for the Patient Centered Research Institute (PCORI), a government funding organization that seeks to put patients at the center of research. Last week, I was fortunate to be a co-author of an article in Health Affairs—together with the lead team at PCORI. The article describes the importance of patient powered research. But what is patient powered research and why is it important to the Lyme community?
Traditionally, research has been researcher centered rather than patient centered. Researcher-centered research pursues questions and curiosities of researchers that may have little or no relevance to patients. While this research may advance the pet theory of a researcher or generate additional funding to support that theory, it often does not improve patient care. It may, in fact, not even be research that patients think is important. And, it may not be research about patients that are seen in clinical practice.
And, patient-powered research is intended to be part of a learning healthcare system. Learning healthcare systems learn from their mistakes. If they suggest a therapy, they look to see if it in fact works. If not, they go back to the drawing board.
Patient-powered research seeks to have patient involved in framing the question, selecting the patient population, determining the treatment approach to be studied, and interpreting and disseminating the results. Examples of organizations that pioneered the patient-powered research include the Dr. Susan Love Research Foundation’s Army of Women.
As the authors of the article explain:
Too much clinical research has been funded, conducted, and published without attention to the ultimate relevance of the research questions or usefulness of the study findings to health care decision makers—namely, patients, their caregivers, clinicians, payers, and policy makers. Much clinical research has missed the mark. ..
When we look back over the past ten years of research in Lyme disease, too much research funding has been given to answer questions that help support research paradigms of research. For example, how many projects do we need to fund to help Dr. Wormser advance his theory that Lyme disease does not persist and that patients should not be treated? How about a research project to seeks to improve patient quality of life? To help patients get back to work or school?
And, as for a learning healthcare system in Lyme disease? It doesn’t exist. When patients remain ill, the response has been “so what, too bad, learn to cope.” Why not ask the obvious questions that patients care about? If 30 days of treatment doesn’t work, what does? If 90 days of treatment doesn’t work, what does? Or do these treatments work with certain patients, but not others? For these questions even to be asked, patients need a voice in selecting what type of research matters.
Right now, Lyme disease research is in the age of the dinosaurs. Patient-powered research could change that. Count me in!
Fleurence RL, Beal AC, Sheridan SE, Johnson LB, Selby JV. Patient-Powered Research Networks Aim To Improve Patient Care And Health Research. Health Affairs. 2014 July 1, 2014;33(7):1212-9.
LYME POLICY WONK is written by Lorraine Johnson, JD, MBA, the Executive Director of LymeDisease.org. Contact her at email@example.com. On Twitter, she’s @lymepolicywonk.
- July 15, 2014 at 10:25 am
Good introduction of the patient-centered research concept. But it left me with more questions than it answered.
How does a patient get involved? What are the different levels of involvement, if they are present? Who can we contact to volunteer, or just to get more information on how TBD victims can become empowered? Who can I talk to??
If we do get involved, can we influence govt studies and those emerging from the normal rank and file of academia? If so, how? If not, why not?
Can we create our own research endeavors? What are the caveats? Where would funding come from?
I suggest a follow-up piece: Ten Questions That When Answered Will Empower Patient-Centered Research
- July 15, 2014 at 12:56 pm
If you are dealing with chronic Lyme then the answer is, it takes as long as it takes. Co infection blood tests and Broad spectrum blood tests on organs, levels and immune response with detailed CD57 and C4A reports every three months. Multiple high dose antibiotics 500mg each twice a day for possibly years. Equally as important as antibiotics are powerful probiotics “100 billion cfu twice a day”, super supplements and diet / lifestyle change. Starve the Lyme ” no added sugar or carbs” and super charge your immune system even after treatment for at least 3 months. It will be very exspensive $15 to $20 thousand dollars a year or more and you will feel miserable for a very long time 6 months to 16 month before you start feeling vibrant health again but it is right now the only way to be cured. The doctor can only give you the tools it is up to you to use them. Good luck from a Battleharden Lyme Fighter.
- July 17, 2014 at 12:58 pm
There are better ways than years of antibiotics. Tried that a number of times. Now after two months of using a Rife mating regularly I am 90% better. Can’t even remember last time I took a pain killer, and sleeping again and thinking clearly.
- July 18, 2014 at 7:02 am
My son has chronic lymes…what is Rife?
- July 22, 2014 at 7:01 am
Judith says, “There are better ways than years of antibiotics. Tried that a number of times. Now after two months of using a Rife mating regularly I am 90% better.”
I’ve had Lyme since 2009 (late stage) and I relapsed a second time for six months, first bout was one and a half years with pulsed antibiotics. I’m surprised I’ve never heard of her reference to a “Rife mating”. Could someone please explain this treatment or send a link? Thanks.
- July 17, 2014 at 1:07 pm
I totally agree with Keith. I’ve had Lyme for 40 years. Got it at 18, brushed off, 58 now and bedridden. I fought hard for 10 yrs., no insurance, spent money like Keith mentioned above. Tired every protocol both pharmacy and homeopathic. It took 10 years but I “got better” for about 4-5 yrs. Now I have relapsed and am just as sick as at the start with new and frightening symptoms to add to the original set.
We’re fighting again. But I am seriously questioning whether or not it is the right thing to do. What would happen if I stopped all meds ? I take 70 pills/liquids every day. I’m bedridden. Could I actually get a “death by Lyme” on my death certificate ? How long would it take ? A yr, 10 yrs ? It sounds crass, but ,like AIDS, more of us are going to have to die of Lyme before anyone will notice.
- July 15, 2014 at 4:20 pm
There has been progress in the field of Lyme disease and it should all be recorded for future understanding and development of better treatments of the nay sayers that don’t believe in Lyme disease or late stage as my wife and I suffer. Perhaps one day their own unfortunate family will experience the trauma of this terrible epidemic. I wouldn’t wish this on my worse enemy. Go Ilads and Lymedisease.org
- July 17, 2014 at 5:29 pm
I had Lyme disease for over 40 years before it was accurately diagnosed – along with every diagnosis in the medical dictionary. Since being diagnosed, about 7 years ago, I have made little, if any progress, despite trying allopathic and many integrative/alternative approaches. Thankfully, I was introduced to the possibility of genetic polymorphisms and the possibility of methylation and detox problems which keep me from clearing toxins, among other things. After genetic testing of a saliva sample, sure enough, I have several critical polymorphisms that are causing their own problems plus keeping me from clearing the neurotoxins, heavy metals, etc. I just keep reabsorbing them!! As much as 60% of the population has one or more of these “problem areas”, especially if they have one or more chronic illnesses. If you are not making any progress, or keep relapsing, check in to this likely cause.
http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%7D – TO SHOW HOW THIS ALL WORKS AGAINST UIS – EXCELLENT
Also, if you have ever had the “good fortune” to be put on a fluoroquinolone antibiotic for your Lyme, or any other infection,(Levaquin,Cipro, etc) you may have been “FLOXED” and now have additional damage/symptoms which you can’t differentiate from your Lyme symptoms. It may be a matter of life or death if you ever were to take another fluoroquinolone, as it is with me!!
I am “lucky” enough to have all three of these health challenges, and I’m trying to get the word out to Lyme patients, so you, hopefully, won’t have to chase your tail and suffer on and on as I have.
I think these two additional areas of concern MUST be addressed NOW in patient-powered research!!
- July 20, 2014 at 2:43 pm
Response to Sue who asked about the Rife machine…
Google provides great answers. There are great books available and on Amazon you will find plenty like this:
- July 20, 2014 at 10:36 pm
I had chronic lyme disease for over 30 years. No help from the medical community in any way – and also misdiagnosed by some alternative health professionals, too. It wasn’t until the lyme caused life threatening complications with pulmonary embolisms, near death, unable to walk, swallow, or barely breath that I knew there was something wrong that medical doctors would not diagnose or care about, and I had to find a way to heal myself. With the help of prayer, I found an alternative healer who worked exclusively with lyme and brought my health back with colloidal silver treatments. Then, later on, the lyme still wasn’t completely gone, and I found a wonderful naturopath, a PHD in nutrition, herbalist and kineseologist who conpletely eradicated the lyme. Now it is a journey of detoxing, rebuilding and repairing the damages done by the lyme. Lyme can be eradicated fairly easily with herbal medicine. It’s the aftermath that takes time. It would be wonderful to see a grant foundation set up so that recovering lymers could have the funds needed to heal, rebuild their lives and not loose their jobs, homes, careers, too. I am in need of financial help and hope to find the next steps in this journey. Patients have the wisdom it takes to heal – we LIVE with it!
- October 7, 2015 at 6:27 am
As a chronic Lyme sufferer and patriarch of a family with 9 lyme sufferers that primarily got it congenitally, I would love to be part of the study.
- February 11, 2016 at 8:37 am
I live in Ct and have been bitten numerous times by infected ticks over the last 30 years. Everyone I know has someone in their immediate family who has severe Lyme. My son is 32 and has probably had it since he was a teenager. Fortunately, he is able to hold down a good job.
My three best best friend’s sons who are also around 30 have Lyme so bad, they are manic depressives. They can barely work, are reclusive and totally dependent on their parents for support. They were misdiagnosed for 15 years. Drug protocols are only so effective against their fight for normalcy. It is a sad sad situation.
I have spent the last 3 days reading all of the blogs, articles and opinions about diagnosis, treatments and ultimate cures. It is all a bunch of confusion and misdirection. Who is out to make money from our suffering by prescribing placebo treatments that have no ultimate effect on our well-being?
Why is the latest test by a Virginia based nano-technology that was partially funded by the State not being splashed across all of the Lyme websites? I haven’t heard on iota of relief that a simple urine test can tell you within 2 days of being bitten whether you have spirochetes in your bloodstream. You read about it…
Lyme Antigen Test
Nanotrap® Lyme Antigen Test (Nanotrap® LA Test)
A GAME CHANGING TOOL FOR LYME DISEASE DIAGNOSIS
There is a critical need for a fast, reliable, and accurate Lyme disease test
The Nanotrap® Lyme Antigen (LA) Test is a novel, high sensitivity, DIRECT test for Lyme that will provide valuable information to assist a physician in diagnosing and treating Lyme disease at most stages of infection.
Unlike other clinical Lyme disease tests that are INDIRECT, the Nanotrap® LA Test is a non-invasive test that provides highly sensitive and specific direct detection of the Lyme antigen, Borrelia burgdorferi (Bb), in a patient’s urine sample.
The Nanotrap® LA Test can provide valuable information, at anytime in the infection cycle, about the presence of the Bb antigen when used at the time of initial infection, during and after a course of treatment, and in some cases of recurrent disease.
Is the CURE in the form of a Claritan derivative? Loratadine seems to prevent the absorption of manganese by the bacteria which is fatal to them. The scientists don’t know how to get the drug into the human body, yet. Give them another 10 years of research and FDA approvals before WE, the general public, get any type of relief from this approach.
Is there a conflict here in Ct with a group of investors who just dumped a ton of money into I Genex? Their testing may be accurate and maybe not? It is expensive for inconclusive results.
I am always bewildered at how my doctor does his analysis of the testing results. I have a feeling that it is similar to reading Egyptian hieroglyphs. You know there is a message, but if you decipher what is is you’re cursed for life…… OH, I forgot…. I have LYME….. I am cursed for life, aren’t I?
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