Crowdsourced Women’s Health Research

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women's health research
A dirty little secret in the world of women’s health – there are relatively few data guiding medical decision-making. Indeed, across all medical specialties the auspices of evidence-based are crumbling quickly in the face of open access and open science. Recent reports suggest less than 50% of all medical treatments have any data to support their efficacy. Of that evidence, much could be suspect given the rampant payments from pharmaceutical and device companies to physicians and other decision-makers, plus the well-documented publishing bias and even fraud plaguing the scientific publishing industry.

In women’s health, matters are even worse. Not only are evidenced-based, clinical practice guidelines nearly non-existent in Ob/Gyn (only 30% of practice guidelines based on data) and women still not included in early stage clinical trials in sufficient numbers, but regulatory agencies do not mandate gender analytics for new medications. The result,  post market adverse events – think death and disabling injury – are more common in women than men.

Why do women die and suffer from adverse events at a much higher rate than men?  Because most medications reach the market without having ever done the appropriate testing or analytics to distinguish why women might respond to said medications differently than men. Even in the lab, male rodents are used about 90% of the time.

What about medications developed specifically for women? These too are poorly understood, mostly because the outcome variables are not focused on the totality of women’s health. For example, it is important that oral contraceptives prevent pregnancy, but it is equally important that they don’t cause blood clots, stroke, heart attack or cancer. And if blood clots, stroke, heart attack or cancer are deemed acceptable risks for birth control (and I don’t think they are), then shouldn’t we know which pills are the most dangerous and which women are most at risk?

One cannot manage, what one does not measure and we don’t measure critical components of women’s health. We also don’t track adverse events or side-effects very well. Question: have you ever reported a side-effect to a doctor? Do you know if he/she reported it to the FDA, the CDC or any other adverse events registry?  Probably not, and that is the problem.

If you knew you had a 20 times higher risk of stroke or heart attack for one medication versus another, would you choose differently? I bet you would, but as medical consumers, we don’t have that information. In many cases, those data don’t exist.

That’s where crowdsourced research comes in. At Lucine, the parent company of Hormones Matter, we think the lack of data in women’s healthcare is unacceptable. We know that the larger companies who sell these products have no motivation to gather or make public these type of data – too many billions of dollars are at stake – and so, it is up to us, the women who need safe health products, to be the change agents.

The simple act of completing surveys on critical topics in women’s health can and will save lives. Your data will tell a story. Add that to the data from hundreds, and hopefully thousands of other women, from all over the world and from all walks of life and we will be able to determine which medications, devices or therapies work, which ones don’t. We can give women the information needed to make informed medical decisions.

We are currently running four women’s health surveys, but plan on running many more. So check back regularly. If you qualify for any or all, take a few minutes and add your data. If you don’t qualify for these, share these surveys with your friends and family through social media. The more data we can gather, the more clear our medication choices will become.

Health Surveys for Real Women

Oral Contraceptives Survey

Oral contraceptives (birth control pills) are used by 98% of the female population at some point in their lives. They are prescribed for a myriad of reasons unrelated to pregnancy prevention. Sometimes they work; sometimes they don’t. Wouldn’t it be nice if we knew which brands of birth control pills worked for which conditions? Better yet, wouldn’t it great if we could avoid the pills that didn’t work, made a particular condition worse or had a higher than average side-effect profile? Take this survey if you have ever used oral contraceptives. Help determine which birth control pills are safest and have the fewest side-effects. You may save another woman’s life and health.

The Hysterectomy Survey

By the age of 60 one in three women will have had a hysterectomy. Hysterectomy is one of the most common surgical procedures for a range of women’s health conditions. For some conditions, hysterectomy works wonders. While, for other conditions it is only nominally successful. The purpose of the hysterectomy survey is to learn more about why hysterectomy works for some women’s health conditions and not others. We’d also like to learn more about the long term health affects of hysterectomy – does a woman who has had a hysterectomy have a higher or lower risk of other health conditions? Take this survey and help improve women’s health.

The Gardasil Cervarix Survey

Women and their physicians need more data about the side-effects of the HPV vaccines, Gardasil and Cervarix. There is a lack of data about who is at risk for adverse events and whether certain pre-existing conditions increase one’s risk for an adverse event. There is also a lack of data about the long term health effects of these vaccines. The purpose of this survey is to fill that data void; to learn more about the risks for, and nature of, adverse events associated with each of the HPV vaccines, Gardasil and Cervarix. Take this survey and help improve women’s health options.

The Lupron Side Effects Survey

Leuprolide, more commonly known as Lupron, is the GnRH agonist prescribed for endometriosis, uterine fibroids or cysts, undiagnosed pelvic pain, precocious puberty, during infertility treatments, and to treat some cancers. It induces a menopause like state stopping menstruation and ovulation. It’s widespread use for pain-related female reproductive disorders such as endometriosis or fibroids is not well supported with very few studies indicating its efficacy in either reducing pain or diagnosing endometriosis or other pelvic pain conditions. Conversely, reports of safety issues are mounting, especially within the patient communities. The Lupron Side Effects Survey was designed to determine the range, rate and severity of side-effects and adverse events associated with Lupron use in women.

All surveys are anonymous and participation is voluntary. More information about individual surveys can be found: Oral Contraceptives Survey, The Hysterectomy Survey, The Gardasil Cervarix HPV Vaccine Survey.

Visit our Take a Health Survey page for new surveys and updates or better yet, sign up to receive our weekly newsletter for all the latest research and hot topics pertaining to women’s health.

 

 

 

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4 Comments

  1. Thank you for this article, with which I thoroughly agree. There are few areas so poorly researched as hormones, especially their interaction with the immune system. The WHI studies further underline the complexity of this area. It is true that the majority of rodent studies are carried out using males, which means a good deal of information is not being collected. It is known that female mice differ in their susceptibility to infection, for example. Indeed, some have proposed separate clinical trials for men and women to investigate drug efficacy and toxicity.
    The effects of hormones are very much timing, concentration and context dependant. One of the most comprehensive reviews regarding the effect of hormones was published in endocrine reviews in 2007. Another factor adding to the complexity is that estrogen receptors, certainly estrogen receptor alpha, are activated by structurally diverse ligands, including environmental chemicals. Estrogens, however, are mitogens, not carcinogens.

    A neglected estrogen-dependant disease, is endometriosis. Estrogens play a key role in this pathology, but novel drugs are badly needed, which are not contraceptive and without the severe side effects of existing therapies which target the hormone system. However, we are far from understanding the true role of estrogens, as well as other ER agonists, in this context. Further, there is crosstalk between various signaling systems.
    Research using appropriate downstream mediators as well as physiologically relevant concentrations is necessary.
    Can you explain how to further involve more patients?
    I would like to suggest a patient survey on the efficacy of certain treatments for different types of endometriosis.

  2. I very much appreciate the research you’re doing Chandler – both through Hormones Matter and Lucine Biotechnology. Your surveys will hopefully provide some much needed data. As I state on the home page of my hysterectomy consequences web site, women’s healthcare remains inconsistent, incomplete and often slipshod. Women are not routinely told about the potentially life-shattering risks to which they are being exposed via hormones (e.g. birth control) and surgery (e.g. hysterectomy).

    Personally, I don’t believe for one split second that 98% of women would use hormonal birth control if they were truly informed of the many long-term potential risks and side effects. Women are assured birth control is safe… Likewise, I don’t believe that over half a million women a year would agree to removal of their healthy female organs if they were told about the life-long adverse consequences – especially since fibroids are the #1 reason hysterectomy is performed. Fibroids are almost always benign and disappear at menopause. It’s just not reasonable to believe half a million women are being ‘informed’. I feel certain that very few women would agree to ovary removal if the correct medical term ‘castration’ was used by their doctor.

    I have to conclude that women are not being told the truth (at least not all of it) regarding these important issues. Women are going to have to take charge of their own health. In my opinion, doctors are under extreme financial pressure to generate profit and it’s just too easy for them to recommend expensive surgery for a condition that can be treated alternatively. Likewise, women can’t trust their doctors recommendation regarding hormones (birth control and HRT) when the drug companies ‘reward’ doctors for their patronage.

  3. Excellent article! I would like to add my 2 cents on a few excerpts.

    Excerpt: “In women’s health, matters are even worse. Not only are evidenced-based, clinical practice guidelines nearly non-existent in Ob/Gyn….”
    My comment: And even worse, most gynecologists are ignoring and going against the medical evidence. Case in point – hysterectomy. It is the most overused surgery after c-section despite medical studies showing the permanent adverse effects (with or without ovary removal). Yet 1 in 2 women will have a hysterectomy by age 72. 73% of women have healthy ovaries removed at the time of hysterectomy causing even more harm.
    A 2000 study even concluded that ACOG deems 76% of hysterectomies to not meet their criteria yet the rates have not declined and robotics seem to be making matters worse in order to recoup the cost of the robots.

    Excerpt: ““If you knew you had a 20 times higher risk of stroke or heart attack for one medication versus another, would you choose differently? I bet you would, but as medical consumers, we don’t have that information. In many cases, those data don’t exist.”
    My comment: This refers to medication and, yes, we need this data. But for procedures (hysterectomy included) there is a lot of data about the harm but women aren’t being given full information by their doctors. I doubt so many women would “choose” hysterectomy if they knew even half of the adverse effects. Studies show increased risk of heart disease, hip fracture, loss of restorative sleep, psychosexual problems, cognitive decline, incontinence, digestive problems, kidney cancer, thyroid cancer. This is with ovarian conservation. Removing the ovaries causes these problems plus more. Women deserve this information so they can make an informed choice about hysterectomy.

    1. Thank you for your comments. You are absolutely correct on all points. That is why we are doing this research and we plan on doing many more studies in the women’s health arena simply because there are so few data available. With regard to the risks of medication – some oral contraceptives are much more dangerous than others – most have far too many unreported adverse events as it is. Neither women nor physicians have these data to make the appropriate decisions. With 98% of women using oral contraceptives at some point in their lives and the rampant OC marketing for off-label uses with little to no evidence of efficacy, OCs are more than just any medication – they are the most widely prescribed medication ever. So to not have these data is negligent – I think.

      Hysterectomy is all too common and the role of hormones in general are disregarded. Even with partial hysterectomy – leaving the ovaries- hormone feedback pathways are significantly altered causing all sorts of biochemical reactions throughout the body/brain. That’s on top of the structural changes/damage that occurs and for what? For lack of innovation in women’s health. Certainly, we can come up with ways to prevent and treat the conditions for which hysterectomy is used. Endometriosis is severely debilitating and often women have a hysterectomy b/c there are no other options – again it’s lack data, lack of education (on the physicians part), lack of innovation. Imagine suffering in intense pain for 10-15 years – one gets to the point where taking it all out becomes a wished for option. It shouldn’t be that way.

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