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Endometriosis Patients Viewed As Cash Cows?

Have you ever felt like you were viewed as a cash cow?

Q: Are endometriosis patients viewed as cash cows? Are the 89 million endometriosis patients worldwide viewed as a source of revenue?

A: We’ll come back to this question in a moment. (Try to stand the suspense).

First, let’s see what these people think on the matter:

Endometriosis – Pipeline Assessment And Market Forecasts To 2017.

New Market Report Published. New report provides detailed analysis of the Healthcare and Medical market.

Let’s re-visit the question I posed earlier…

Q: Are endometriosis patients viewed by some as cash cows?
A: Absolutely!

Today, I posted the link above on Facebook. I attached this comment:

Yet another “endometriosis pipeline assessment & market forecast” has been released. Who is looking out for the endometriosis patients in this world of people trying to make money off the backs of endometriosis patients? With 89 million endometriosis patients worldwide, I wish I knew of an endometriosis organization that had my back. Sadly, I don’t feel there is an organization that fits this description.

One of my Facebook friends responded (in part) like this:

It seems to me that health-related nonprofits that represent chronic, invisible illnesses are becoming archaic, outdated. Our participation in social networking is doing more for us than most of these nonprofits are, from my point of view. And, social networks don’t charge dues and fees, don’t depend on corporate/government funding to dictate what they can and can’t do, and don’t have to brag and spin the truth every ten seconds!

Please note:

I am not suggesting that all health-related nonprofits are outdated or inefficient. I do think many are, though. In 28 years of living with chronic illness and having interacted with a great number of health-related nonprofits, I have had the opportunity to witness some things that opened my eyes. This is especially true since I have so many different chronic illnesses and I can look at the big picture and compare/contrast various health-related nonprofits as far as how well they have (or haven’t) served my needs and the needs of those I care about (my online friends, my local support group members, family members who are chronically ill, etc.)

So, I went on to say to my friend that I agree about the bragging/spinning truth aspect for so many health-related nonprofits. I have personally witnessed multiple health-related nonprofits that hold making money as a priority over patients’ best interests. Sometimes, nonprofits I am familiar with have focused on attracting members to their organization (to pay dues, donate money) so intensely as to lose focus on how best to help the patients obtain the support and information they need.

Please note that I wish to broaden this conversation beyond endometriosis. My friend’s feedback to mine in conjunction with the above link about endometriosis was regarding health-related nonprofits in general. We were no longer just talking about endometriosis at all.

This isn’t just about endometriosis patients being viewed as cash cows. Let’s face it. How many chronically ill patients are not viewed as cash cows? By the very aspect that illnesses are chronic, the patients’ needs are ongoing. Whether we talking about need for treatment or need for information and support, patients with chronic illnesses have ongoing needs and this makes them potential cash cows for those who wish to profit from their pain.

“Jeanne, step away from the topic of endometriosis”!

Regular readers here know that while I write about numerous chronic illnesses, endometriosis is definitely a focal point of my blog. Sometimes, a story like the one linked near the beginning of the post will inspire a post directly or will lead to me posting it on Facebook and proceeding to blog about it. I have made a conscious effort to expand this beyond endometriosis. I truly believe that ALL chronic illness patients are at one time or another viewed as “cash cows”.

So, let’s revise the question beyond endometriosis…

Q: Are chronically ill patients viewed as cash cows? (Nearly one in two Americans – 133 million – has a chronic medical condition of one kind or another). Are they viewed as a source of revenue?

A: Absolutely!

Even if every doctor and health-related nonprofit organization out there were extremely ethical, passionate, and dedicated in their efforts to interact with patients (if only this were true), the fact is that chronic illness patients are still “cash cows” in the aspect that their needs are ongoing. Therefore, with nonprofits, membership dollars or donations tend to keep flowing to nonprofits so long as patients they feel their needs are being met/they are getting value for their dues (or until their funds are depleted and they can’t afford to pay for membership… especially when so much information is available for free online). With healthcare treatments, chronic illness patients tend to take great pains to seek out the best treatment they can find to meet their needs (again, within their means).

Make no mistake! Nonprofit “charities” may have “nonprofit” in their names but they absolutely care about making money. They need money to keep running. They may recruit members with dues that entitle members to newsletters or discounts. Some are clearer than others on how they spend any money they receive from membership dues or donations. Some organizations do a better job than others at things like managing money, prioritizing how it is spent (ethically? in the best interests of the patients they are supposed to be serving?), or keeping special interest groups like pharmaceutical companies from worming their way into their organizations.

In other words, despite the title of this post and the link above happening to be about endometriosis, I would argue that there are a great many examples out there of organizations (some of which are health-related nonprofits) and healthcare providers connected to all sorts of conditions whose interest in the subject at hand is focused on making money more so than on what is in patients’ best interests.

I agree with my friend that some nonprofits most definitely have room for improvement on how to use social media to serve the needs of patients (especially how to do so in an ethical fashion).

Here is a portion of what I then said about the state of many health-related nonprofits that represent chronic, invisible illnesses:

Others (other health-related nonprofits) are very aggressive with social media and are spinning the truth in circles. Some even prey on the patients.

I went on to say that as far as return on investment issues, I think that some nonprofits have their priorities off-base. They lose sight of what should be their number one priority (the best interests of the patients they represent and are supposedly advocating for)! I think they focus too much energy on other things.

Question: Shouldn’t an organization that professes to advocate on behalf of a particular patient population being making the patients’ best interests a number one priority?

My friend said, “Your last point about losing sight is so on target” and “Very difficult issues, especially when huge egos are involved”.

The bottom line I wish to hit home with this piece is that it is imperative for patients to do their homework – and research organizations before sending in membership dues and/or donations no matter how slick the organizations’ pitches are. How to go about doing so is too much to cover in this post. Just be aware that nonprofits are not automatically “saintly”.

Also, before you retweet a link on Twitter or share it on Facebook for a health-related nonprofit, I urge you to do some basic fact-checking on the organization. Doing so before you decide to share their links online is important because without checking the organization out, you don’t know what it is you’re promoting. Just a slight amount of digging on a particular organization may yield enlightening results that may well make promoting them feel less appealing.

Obviously, selecting medical care to best meet one’s needs is very important too. Again, this is beyond the scope of this post but it’s important for patients to make informed decisions.

You may not like being a “cash cow” but if you are going to be viewed as one, wouldn’t you like to support the organizations and doctors that have YOUR best interests in mind (and withhold your support from unethical, dishonest, exploitative, and/or inefficient organizations)? It’s something worth really thinking about, I think.

—————> What do you think???


This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: Endometriosis Patients Viewed As Cash Cows?

16 comments

1 CredaNo Gravatar { 09.15.10 at 8:29 pm }

WOW! You are amazingly on target, Jeanne. Please keep up the good fight. Your writing is outstanding, and I mean that. C

2 JeanneNo Gravatar { 09.16.10 at 2:00 am }

Creda,

Thank you for your kind words! Your feedback to my comments on Facebook today honestly were part of what inspired me to turn this into an entire post. I greatly appreciate your insights and knowledge on the important issues involved with ethics on how patients are treated by health-related nonprofits and healthcare providers alike. Thank you again!

Jeanne

3 JennNo Gravatar { 09.16.10 at 6:23 pm }

BRAVO Jeanne!!

This is a topic that needs LOTS of attention!! It is very sad to know that the organizations that are supposed to be helping us are not really looking out for our best interest. It makes me sick. I definitely have felt like a “cash cow” throughout my experiences with endo. For example, when my doctor wanted me to start Lupron treatments. His staff explained that my insurance wouldn’t cover one penny of this treatment and it cost over $4,000! I was contemplating what I was going to do and ended up in the ER due to severe pain. Feeling hopeless, I asked my doctor if was possible to start my Lupron treatment in the hospital so it might be covered as part of my hospital stay. He adamantly replied that I HAD to get the shots at their office. Well, I discovered (thanks to a great patient care coordinator!) that I could get these shots covered with a simple change in the coding! (They didn’t help anyway, but that’s a whole other story). This doctor’s office had already performed two (unsuccessful) laparoscopies, so imagine that cost. Now they wanted me to agree to this expensive treatment and another laparoscopy. Needless to say, I found myself a new doctor.

This is just one example of feeling like a “cash pinata.” It seems in the benefit of some powerful people to focus on expensive treatments and procedures instead of finding a cure!

Thank you for starting this discussion. I hope to someday proudly belong (or maybe even start!) an endo organization that will truly look out for our best interests and focus on finding a cure. I’m never giving up, and I know you and your many friends aren’t going to either!
.-= Jenn´s last blog ..WICKED ITCH OF THE YEAST =-.

4 StephNo Gravatar { 09.16.10 at 10:03 pm }

Thank you for putting into words what I have been thinking for awhile. I just kept saying I should let it go, but the truth is, I’m really bitter over it, and now I will get it off my chest on my blog, too!
.-= Steph´s last blog ..Two things accomplished despite the pain =-.

5 I Will Not Suffer In Silence » Blog Archive » Today I am feeling bitter. { 09.16.10 at 10:37 pm }

[...] article, titled “Endometriosis Patients Viewed As Cash Cows?“, addresses a rhetorical question that’s been brewing in my own mind for quite some [...]

6 Matthew SmithNo Gravatar { 09.17.10 at 4:02 am }

Besides how much money they ask from members, how democratically run are these charities? Some illness-related charities are run in such a way that all decisions are made by an inner clique, with the ordinary “members” being service users (or sometimes little more than magazine subscribers) rather than stakeholders. This is definitely true in the case of many of the British ME charities, and this may be the cause of why so many of them have fallen out of favour as the membership can’t vote out those responsible for promoting bad science and therapy. Some of them get their members to do administrative work on a voluntary basis and thus they claim that they are run by and for sufferers, but it’s not those people making the decisions.

7 JeanneNo Gravatar { 09.17.10 at 1:30 pm }

Jenn:

Thank you, Jenn!!

This topic really does needs LOTS of attention. I agree! It is sad (and a few other negative emotions) that organizations that promote themselves as advocating for patients of (fill in the blank here __________ to name an illness) so often do not focus on what they claim to stand for. Since I have been chronically ill for 28 years and since I have many different chronic illnesses, I have had the opportunity to witness this phenomenon with many health-related nonprofits.

With some, I was a dues-paying “member” and witnessed things from a closer vantage point and, with others, I was not a dues-paying member and I witnessed from a different vantage point. Also, I have a friend who has worked in positions where she oversaw the process of obtaining donations for a health-related nonprofit and I got to hear her perspective on how such organizations sometimes operate. She educated me about what time and effort goes into organizing a walk and all of the hoops that have to be jumped through as far as obtaining various permits (health permits for food served to walkers, permits to walk on a particular street, etc.), where to place water stops for walkers, different legal issues to manage, etc.

It makes me sick too. The notion of an organization saying that it is fighting for the patients in the patient population it represents when it is not focusing its energy that way at all is upsetting and, in some cases, downright infuriating. While some health-related nonprofits are simply inefficiently run, there are others who willfully spread misinformation. “Misinformation is worse than no information”, as a friend of mine said to me yesterday. It’s true. When an organization spreads myths and confusion about an illness it claims to be advocating for, it’s a real problem.

This is not one health-related nonprofit organization that isn’t advocating for patients as it states it does. This is most of them, from where I sit. The more time goes by, the more things I discover that strip me of my faith in health-related nonprofits. I am not saying that there are not any worth supporting. I have to tell you, though, that the list keeps getting smaller in my book. As time goes by, I learn about things like inefficient management, poor prioritization on how to spend donations and membership dues, organizations spreading misinformation (causing more harm than good), etc.

With the amount of time I have spent online researching articles and interacting with fellow patients (including picking their brains about their experiences), I have learned a great deal about a number of health-related nonprofits. Sadly, what I have learned is pretty dismal. In the years prior to writing a blog, I learned about the dark side of health-related nonprofits by being a member of them and even volunteering my time for them. So, I have seen it from various angles now and I don’t like what I see. Are all health-related nonprofits bad? No. However, the ones I know a fair amount about are either poorly run, disseminating misinformation, intensely focused on raising money (to the point of pushing everything else way down on the to-do list), and even downright unethical.

Moving on to the exorbitant costs of treatment for endometriosis (or just about any chronic illness), the way the system is set up is not right. The example you gave of being told adamantly that getting your medication administered in your doctor’s office was the only option only to later discover that a coding change on the billing would have enabled you to get the same medication while in the hospital is a classic example. (That is very awesome that you had a patient care coordinator! I have heard of such lovely individuals but have never had the pleasure of having one. I have always had to advocate for myself. By the way, did you know that Endochick is currently in graduate school to obtain a patient safety degree? So, she will be helping patients in this sort of capacity).

I can only imagine the cost involved with the unsuccessful surgeries you had with your former doctor. I’m sorry. The fact that they seem to have tried to bully you into getting that treatment in the doctor’s office rather than the hospital when the patient care coordinator verified that you could, in fact, have had the treatment administered by the hospital is absurd. I can see why you found a new doctor.

Yes, sadly we (chronic illness patients) all seem to have numerous “cash cow” stories such as this. It absolutely is in the benefit of some powerful people to focus on expensive treatments and procedures instead of finding a cure! Without a doubt. This can be said for any chronic illness. Chronic illness patients for whose illness there is never a cure found are an indefinite revenue stream. It’s no wonder that so many forces are at work to prevent finding a cure. After all, keeping us sick is so much more profitable.

I once heard an awesome quote. Michael J. Fox was being interviewed about his foundation (Michael J. Fox Foundation for Parkinson’s Research). Essentially, what he was saying is that the goal of his foundation is to go out of business. (Obviously, if a cure were found, there would be no need for the foundation anymore). I believe he was saying that he tells this to people when they join the foundation. THIS needs to be the mentality. The goal for health-related nonprofits should be like the goal of Michael J. Fox’s foundation… to go out of business.

Sadly, too many health-related nonprofits get caught up in obsessing over bringing in money (to the detriment of patients whose needs for support and information get pushed down the priority pile), people jockeying for power/titles/press/job security, and then there are unethical things like conflicts of interest. (How many of us have opened up a newsletter or magazine from a nonprofit only to be deluged with ads from Big Pharma? How many of us have seen health-related nonprofits form alliances with companies that peddle products that are linked to worsening the very illness the organization is supposed to be fighting for?)

Thank you for your feedback. I love your spirit and I’m right beside you! I’m never giving up either. We have lots of strong, passionate patients who are on the same page!

Steph:

This topic is right up your alley, isn’t it? ;) I’m glad you liked the post. Like you, I have seen information like that which was in the article I cited in this post before but this particular one just set me off. Something about that “$1.1 billion by 2017″ just triggered a response, in the form of this post, for me. Sometimes, I “let these things go” too. Sometimes, I am too tired or in too much pain to deal with it. However, it is therapeutic for me to get it off my chest. I also believe it is a worthy topic to focus people’s attention on. So, I thought it was about time to put my frustration, anger, and disappointment into words. The problem won’t be solved overnight and it is a massively huge problem involving billions of dollars per illness.

However, the first step to addressing a problem is really grasping that it exists and analyzing exactly what’s wrong and what might be done to make it better. It is a complicated, messy, special-interest-driven cesspool. If we had a million people blogging about it, it would still be a cesspool. However, that doesn’t dampen my spirit in the least because the best way to counter the spread of misinformation is with the spread of factual information. We may not have the public relations firms, money, or power that some have. However, thanks to the power of the Internet and our relationship-building skills, we have a VOICE and we have an entire community of chronic illness patients online. If millions patients band together in an organized, passionate, aggressive fashion, I truly believe that we can make a positive change, bit by bit. It won’t happen overnight and we may never see the landscape just the way we want it or picture it from our current vantage point. However, I do believe each time we speak out about topics like this… the voice of the patients’ chorus gets louder. Bit by bit.

Matthew:

Excellent question! My answer is that health-related nonprofits, as a rule, are not run democratically at all. I would argue that the inner clique phenomenon you described is the norm for most health-related nonprofits. Yes, “members” is often the code term for “the people who pay dues and get a newsletter or magazine in return”. Seriously, this is incredibly common from what I have witnessed. I know of health-related nonprofits that are hemorrhaging “members” because patients have decided they:

1) Can’t afford to be a “member”
2) Don’t see the value of having a membership
3) Find the emotional support and information they were seeking online… for free!
4) Have difficulty accepting the corruption, disorganization, or “inner cliques” that so many health-related nonprofits have
5) Can’t stomach the hypocrisy or in-fighting they see in nonprofits they used to donate to or purchase membership from (or bickering between nonprofits)
6) Are troubled when they learn how the workers (paid and volunteer) at certain nonprofits are treated (or mistreated as the case may be)
7) All of the above

Any voting I have ever seen by members of a health-related nonprofit was in “elections” so rigged – where “members” were immersed for so long in so much propaganda that the “elections” were a joke in my book.

Whether “members” are trying to vote out people promoting bad science and therapy or simply vote out people who have massive egos and have lost their ability to manage the organization with a clear head and in an efficient way, if the votes of “members” never stand a chance of being heard because the power structure is such that they will never be able to pull off such a “coup”, then it’s hard to see the point in being “members” at all.

Yes, many health-related nonprofits do have members do all sorts of work on a voluntary basis. It is true that they then are able to tell the world, “our organization is run by people who have this illness”. The type of volunteers you mentioned are typically eager and excited to help “the cause” (insert an illness here _______ ). Once they observe corruption, inefficiency, and/or spread of misinformation firsthand, these volunteers are typically disillusioned, hurt, offended, angry, and/or frustrated. The organization they may have “dreamed” was going to be the saving grace for people with a given illness is discovered to be something quite different than first perceived.

~~~

Jeanne

8 SaraNo Gravatar { 09.20.10 at 5:45 pm }

Jeanne,

Maybe the annual reports should include a public report based on comments from the chronically ill patients who use the nonprofit services?

I agree that social networking sites, as well as blogs have become an important part of health education and even care. In some ways this can be scary as there’s not way to check the advice. Still, I will use these when I have a health issue because they are more “human” in their approach.

I think this is why support groups are so popular online. You’re talking with a person who’s experiencing the same thing as you and who will often can give more detailed and even accurate advice than your own physician. I think this is because the people are willing to share their stories and take the time to share what they’ve learned about their illness. Something that gets lost in any bureaucracy, which includes nonprofits.
.-= Sara´s last blog ..Story Photo- Guessing Game =-.

9 JeanneNo Gravatar { 09.21.10 at 12:54 am }

Sara,

In regard to the health-related nonprofits, some are better than others at transparency and accountability. Having read through annual reports for such organizations (which tend to put the best possible “spin” on things) and having talked with staff members of various health-related nonprofits in the same period to know what was happening behind the scenes of those numbers, it’s hard not to get cynical.

As far as such organizations including comments from the chronically ill patients who use them is concerned, it would be wonderful if that were an option. The nonprofits I am familiar with did not have this as an option. Sadly, even if they did… there is a serious degree of propaganda at some such organizations and even patients who should/would be angry might be shielded from what would infuriate them if only they knew.

For many years, I was a dutiful nonprofit member (multiple nonprofit organizations) and had no idea of the wasteful spending and inefficiency my membership dues were supporting. With what I now know, I look back and cringe. In retrospect, the dues I paid and the donations I made (and that loved ones made on my behalf as holiday gifts and such) could have been better spent elsewhere. Hindsight is 20/20, as they say.

I don’t mean to sound negative or like I’m a naysayer. By no means am I saying that all health-related nonprofits are dysfunctional. I’ve just seen enough corruption, inefficiency, and downright greed to have a very different view now than I did a few years back.

It’s funny that you should bring up the role of blogs and social networking in regard to health education! A friend of mine has a PhD and has written articles on the subject of “cognitive authority” that really capture what you’re talking about. While it has “endometriosis” in the title, I believe much of the article below could be applied to more than just endometriosis:

Putting the pieces together: Endometriosis blogs, cognitive authority, and collaborative information behaviour

I think we’ve all seen blogs and social networking messages that are not well informed (or even that spread misinformation). I would argue that these do more harm than good.

As you pointed out, Sara, it can be scary to rely on online information that may or may not be accurate. There are many things I look for on health-related blogs. For me, the blogger having some type of disclaimer is important because no blog takes the place of a person seeking medical attention from his/her physician and because people writing about medical issues online should not be dispensing medical advice. For legal/liability reasons, even bloggers who DO have some type of medical degree are wise to post a clear disclaimer to protect themselves and to prevent any misunderstanding with readers that their words are intended as medical advice when they aren’t.

There are ways to check information found online. By comparing information from multiple sources, checking it against peer-reviewed medical research, and so forth… there are ways to do some amount of verification. It takes time and effort but, the again, so does double checking what healthcare professionals say (and, like many chronic illness patients, I double check that too). Doctors are human and can make mistakes.

I shy away (far away) from using the word advice. Years ago, I took a class when I was forming a local support group. We were taught never to give “advice”. We were told that it’s fine to provide suggestions and to direct people to resources that fellow patients have found helpful. Every patient is different and what helps one patient may not help another. I believe it’s always important to emphasize this point when providing suggestions for people to try or look into. The “human” factor is definitely appealing to many. So is the availability of people with whom to connect. With the Internet being worldwide, once a patient engages in relationship-building… he/she can have friends all over the world who are available to serve as a listening ear just about any time of the day with the various time zones.

Support groups online can be a wealth of information at times and at other times they can be a source of misinformation. Online support groups with diligent moderators who stay on top of pointing out any misinformation people post online can be great. Unfortunately, online support groups with timid moderators can be quickly overrun with spammers, people pushing products aimed at the group in question, etc. I have found that all online support groups are not created equal.

Talking with fellow patients who “get it” is such a powerful thing! Aside from the word “advice” (which I do try to avoid), I do believe that fellow patients often have the patience, time (even ones who are very busy), empathy, and compassion to devote to sharing detailed information that is typically not accessible via the doctor’s office. To emphasize, I have a disclaimer posted for a reason. My blog is not intended to in any way be a substitute for medical care. At the same time, I hear what you’re saying!

I agree that connecting with someone who has been through (or is going through) a similar experience is very powerful and practical. Yes, some of that “human” approach can get lost in any bureaucracy.

Thank you very much for the insightful comments! ;)

Jeanne

10 CredaNo Gravatar { 09.21.10 at 9:03 am }

This continues to be an outstanding and thought provoking thread!

Regarding Sara’s comment about using the public’s opinion about the nonprofit: Annual reports are typically done by the actual nonprofit, so that would be a tough one to pull off, I think, as Jeanne said. I remember coming up with the idea of adding patient comments to an annual report one year (many years ago) for the nonprofit at which I worked. Of course, I selected the best of the best of a multi-page document that I kept for the org for such purposes!

On another note, regarding the power of the internet, how many of us have been told by our healthcare providers not to “go there” . . . to avoid medical info on the internet? I have more times than I can count. It always makes me think that the healthcare provider is afraid that I may know or learn more than they know.

These days it seems that many healthcare providers only know/practice what the govt and/or Big Pharma tells them, and the govt is basically owned by Big Pharma. You get the picture. I see it as a food-chain effect (let’s add that one to the cash cow concept!).

Knowledge is power and the internet is putting more of that highly guarded, sacred knowledge, and thus power, into the people’s hands. That has to be very scary for them, don’t ya think?

Again, awesome thread!

11 DianeNo Gravatar { 09.21.10 at 11:09 am }

Jeanne, thank you for linking to my “Putting the pieces together” conference paper! I truly believe, based on research and my own experience as a patient, that knowledge is everything. At the same time, it can be frustrating or even impossible for the most determined patients to sift through all the conflicting information available on a particular topic related to a disease (nutrition for endo, drugs for endo, social support for endo, surgery for endo…) and make an informed decision. (What is reliable, and what will help me?)

Years ago, when I was first diagnosed with endo, I went to a doctor who was on a “recommended list” provided by a nonprofit association for a disease I have. He turned out to be the worst doctor I’ve ever visited. I learned (much later) that doctors pay to be on that list!

12 JeanneNo Gravatar { 09.23.10 at 12:24 am }

Creda,

Thank you! Well, I must say that comments you made to me the other day helped inspire this post.

I was afraid that the patient/public opinion comments would be difficult to pull off. (As much as they’re a great idea!) Like you said, even when an attempt is made to use them, the comments that get seen by the public tend to have been cherry-picked by the organization who is trying to put its best foot forward.

Creda, I have doubts as to whether any patient has escaped the medical advice not to look at the Internet. Oh, don’t even get me started. I think some doctors truly mean well and are trying to protect their patients from unnecessary anxiety, attempting self-diagnoses that are off-base, and believing misinformation. HOWEVER, I agree with you that some healthcare practitioners seem to come across as being concerned that patients might actually dig up questions they are ill-equipped to answer, discover information that contradicts what that doctor has already told the patient, or – as you suggested – reach a point where, in some areas, the patient truly does become better-informed than the physician.

Information is power. Here is my take… Is there misinformation online? You bet. Does one have to exercise caution in where they seek information and how much stock they put into it? Yes. Should patients use information from online in place of seeking medical attention from doctors and other healthcare providers? No. (There’s a reason I post a disclaimer on my blog. I would never want anyone to misconstrue anything I say as medical advice. I do not give medical advice). At the same time, there are many times patients who are confused, drained, and even misinformed find my blog and it’s clear that they are not receiving sound medical advice. I am a big believer in second opinions (or more) as needed.

Big Pharma and the government certainly influence how healthcare providers operate. While I want to be quick not to shortchange the hard work that goes into getting a medical degree, it is also true that some doctors worked hard in university programs that didn’t train them properly. Combine the fact that medical schools (sadly) do disseminate some myths… with special interests like pharmaceutical companies and with government agencies like the FDA dictating what is or isn’t “safe” (again, don’t get me started on the FDA’s process for deciding what is considered “safe”)… and things get complicated. How many FDA-approved drugs later get black boxed due to severe adverse reactions that did not come up in the testing leading to the drug’s approval? But I digress.

Yes, we’ll add the food-chain effect to the “cash cow” concept. ;)

Yes! Knowledge is power. The Internet IS putting more of that into people’s hands. I tried looking at a medical journal tonight but reached a brick wall where the cost for an individual electronic copy is $34.00. I wanted to read it but I certainly can’t be forking out $34.00 for every medical article I wish to see. So, yes… I think some are guarding information as best they can (i.e. such medical journals) but that the vast amount of information fellow patients are sharing online truly has led to better-informed patients who advocate for themselves and seek another opinion if the first doctor seems unable or unwilling to provide the information and/or solutions needed by the patient. Yes, I think some doctors are intimidated by this shift in the balance of power… from patients passively “following doctor’s orders” to patients being assertive and searching for solutions on their own.

Thank you, Creda!

Jeanne

13 JeanneNo Gravatar { 09.23.10 at 1:02 am }

Diane,

It was my pleasure to post your paper! For anyone who missed the link I posted in my reply to Sara previously on this thread, the article Dr. Neal is referring to is below. I highly recommend taking a look at it, if you haven’t already!

Putting the pieces together: Endometriosis blogs, cognitive authority, and collaborative information behaviour

A theme seems to be emerging here. You, Creda, and I have all commented specifically in reference to the power of knowledge (and others have implied it). Much of this seems to go back to knowledge and access to information, doesn’t it? I agree… it can be frustrating or even impossible for patients (even the most determined) to sift through the conflicting information and evaluate what is solid information, what is misinformation, and what pieces of information mean different things to different patients… in light of the fact that each patient is unique. It’s true. Determining “what is reliable?” and “what will help me?’ can be very challenging questions indeed.

Oh, Diane! I remember you mentioning the positivity awful experience that you went through with a doctor on the “recommended list” from a nonprofit. I’m also aware with the “pay to get your name on the list of doctors” policy. It’s shameful that an organization that should be advocating for you would collect the cash to compile that list of doctors… only to send you on to a doctor who put you through a terrible ordeal. I know you had no idea the list involved money changing hands until much later. I’m so sorry.

To me, that is a prime example of the importance of the need that exists for patients to question nonprofits, check them out, and ask around with their fellow patients… who may have insights that can help them avoid such unfortunate experiences.

I am so sorry you went through all that!

Jeanne

14 Jannie FunsterNo Gravatar { 09.29.10 at 9:59 pm }

Dear Jeanne,

What do I think? I think I now know some of these organizations have membership dues.

I think it’s great advice to poke around and Google any organization we are thinking of giving money to.

I think social networking cannot be underestimated. It really has changed the face of the earth.

I think you are doing an AWESOME service to many by getting this out and caring so much. Thank you!!

xoxo
.-= Jannie Funster´s last blog ..The Blog Marm — a poem =-.

15 JeanneNo Gravatar { 09.30.10 at 12:24 am }

Jannie,

Yes, many organizations invest intense effort into “recruiting” members (the majority of which are chronically ill patients) and the dues (plus any donations made to the organizations) may or may not be used responsibly and/or ethically.

I agree that researching organizations we’re thinking of giving money to (in the form of dues, donations, etc.) is a very wise idea!

Yes, social networking is a powerful force… Social media can be used as a force for good or, sadly, for unethical means. My experience back when I was on Twitter was a view into the “dark side” of social media. Fortunately, the good outweighs the bad online. It is just really important for people to exercise care regarding privacy and security issues.

Thank you, Jannie! I think it’s really important for people to ask questions, do their homework, and exercise caution. Sadly, the amount of money to be gained by various forces from chronically ill patients tends to fuel actions and policies that are greedy, unethical, and/or exploitative of chronically ill patients. Patients’ best defense is asking plenty of questions, researching, and critical thinking. I believe it is important to example the ulterior motives of various organizations and treatment facilities.

Jeanne
xoxo

16 Three Wonderful Years! — ChronicHealing.com { 06.01.11 at 12:23 am }

[...] following post is about patients who are viewed as a revenue source. Regardless of what chronic illness(es) one has, it is important to be informed about the fact that [...]

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