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Exciting: Patient Power!

Knowledge is power. Chronically ill patients often spend an enormous amount of time and energy educating themselves about their illness(es) and networking with fellow patients. This increases their knowledge. Their personal experience as patients informs them too. For lack of a better term, let’s call this “patient power”.



While this post and the paper it links to talk about endometriosis, much of this could relate to any number of chronic illnesses. If you do not have endometriosis, please stick with me because you may find this post just as relevant to you with regard to another illness (or other illnesses). This is more about accessing health-related information than anything. Before I share a link to an article that Dr. Neal co-authored, let me share some background from my personal experience regarding searching for health-related information.

When I was diagnosed – via laparoscopic surgery – with endometriosis in 1992 (after living with undiagnosed endometriosis for 10 years), my doctor gave me next to zero information about endometriosis. (The very small amount of information he provided was a skimpy brochure from a pharmaceutical company pushing its drug. It was basically a sales pitch brochure. That’s all I was given). After that post-operative appointment, the very first place I went to for information was my trusty local library. This library had never failed me before. It was well-stocked and had a top-notch staff. I had literally never had a problem finding information there… until that day. I searched for information on endometriosis in the library and found nothing. I then requested assistance from one of the librarians. She wasn’t able to find any information on endometriosis either.


I left the library that day empty-handed and discouraged. As this was shortly before I had discovered a local support group, I had no one to talk with about endometriosis. (The doctor who diagnosed me ended up being less than helpful and I subsequently switched to a much better-qualified specialist with far greater knowledge about endometriosis). Back then, searching for health information online wasn’t an option for me either. (Yes, my younger readers… There was a time when patients couldn’t just search the Internet for health information. Try to imagine that)!

Anyhow, my first breakthrough at finding what turned out to be reliable information was gleaned after spending several hours sitting on the floor in the aisle of a Barnes & Noble bookstore combing through stacks and stacks of books (and copying down toll-free numbers of resources out of the backs of a couple of books I found after a long and tiring search). I exhausted kneeling and squatting in the aisles early on in my many-hour odyssey for information at the bookstore. It quickly became evident that I was going to be there for awhile! (Even my newly diagnosed self was able to determine that purchasing those books would not have been a good bargain for me. My budget was limited and the books were not exclusively about endometriosis. Basically, endometriosis was literally a footnote in these books. So, I just copied down the information I needed).

I quickly realized that access to a university library was imperative. By the time I was diagnosed with endometriosis, I was 23. So, I had already graduated from college. Fortunately, I had some wonderful friends who helped me get access to medical journals and such. I wanted to read anything I could get my hands on about endometriosis.

Fast forward from the early 1990s when I was diagnosed with the endometriosis I’d already lived with for 10 years… to the present day. If a patient were to walk into a library nowadays looking for information about a particular illness (such as endometriosis), what type of resources do you think most librarians would refer patients to? Would they point them to peer-reviewed medical journals? Would they direct them to books written by physicians? Would they make any mention of the Internet as a source for health-related information? If so, how would they determine what sites to point people to?

Diane M. Neal, PhD and Pamela J. McKenzie, PhD have written a fascinating paper.

I strongly encourage you to check it out, regardless of whether you have endometriosis or not:


Check it out…


“Traditional” sources of health-related information are obviously important but, in this paper, they make a case for the value of endometriosis blogs and other online sites as also being potential sources of valuable information. There can be significant differences in the quality of information from site to site. Essentially, Dr. Neal and Dr. McKenzie are highlighting the fact that endometriosis blogs (and other sources of endometriosis information online) should be considered as potentially valid sources when referring information seekers to endometriosis resources. Information from the medical community is important but information from the patient community matters too.

In my opinion, it is very exciting that this paper is a tool for educating librarians about how to incorporate health blogs (such as endometriosis blogs) as valid sources of information for people. As anyone who reads blogs or visits online support groups/forums can attest to, patients’ experiences really do have value and the community atmosphere online can give valuable emotional support as well.

When I asked Dr. Neal about the intentions of this article, she said, “what we were trying to do with the article was broaden the scope of librarians’ thinking beyond standard – or what we call ‘biomedical’ resources – like reference books, PubMed and such” and to “demonstrate how people’s concept of ‘authority’ is changing due to the social media world”. She said the new idea in the article, from an information science research perspective, was “affective authority”:

“In addition to making claims about the cognitive authority of sources, the authors found that bloggers made and contested claims for what might be called affective authority, the extent to which users think the information is subjectively appropriate, empathetic, emotionally supportive, and/or aesthetically pleasing”.

For me, it is really quite exciting to witness a situation where health-related information that is written from patients’ perspectives is being appreciated as a valuable source of information and support for patients (and others) seeking it.

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


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Reading: Exciting: Patient Power!

8 comments

1 endochickNo Gravatar { 04.12.11 at 10:04 pm }

This paper provides the credibility health bloggers and patients need. I have gotten letters from women saying they have learned more online and from patient blogs than from their doctors. Wonderful article!

2 Angel MacNo Gravatar { 04.13.11 at 2:55 am }

Well, that comment you just made falls sadly in the DUH column.. In today’s world of uneducated MDs it is very sad but true that we must be our our Best Informed Consumers and Health Advocates. That really hit HOME for me more than EVER when I had to educate my Dr that a “Bright Red Positive” meant that I tested Positive NOT Negative… Hmm. How do I put this delicately? Let’s say my doctor is an idiot who cannot recognize that a positive test means… POSITIVE! sheez… Self Empowerment and Helping others is a Wonderful and worthy thing to do..
*Hugs*

3 AmandaNo Gravatar { 04.13.11 at 8:10 am }

This is an interesting paper and one I need to re-read again to properly take in (right now, my brain is mush!) Thanks for the link.

As for what you find in local libraries now… well it isn’t much! I may be one of your “younger readers” but I do remember what it was like before I had access to the internet 😉 I am glad that I do have the internet to fall back on, not just because of being able to read about Endometriosis online, but also because of such sites like Amazon which make it easier to find books that aren’t widely available in local bookstores and libraries. I remember both before my diagnosis (when I was pretty sure that Endo was the issue) and after my diagnosis, looking for information in my local library and coming up with hardly anything. There were plenty of books on women’s health, but those that mentioned Endometriosis still only did so in passing. And medical journals were not available there. I was still at university when I received my diagnosis, but as I was in my final year and 80% of my degree rested on the completion of coursework and exams during that final year, I never once had the time to properly search for information there regarding it. Such a shame, as I studied at a university with a large medical education department and I’m sure, had the time (and energy) been spare, I could have found something more. I do think it is such a shame that non-academics cannot apply for access to academic libraries for personal research needs.

Anyway, I shall return to the article when my mind is clearer and I am able to take it in better. I just wanted to leave a comment to let you know I have seen this post and thank you for it.

4 DarleneNo Gravatar { 04.13.11 at 1:32 pm }

Hi… I don’t know too much about blogging, but I do have a great interest in chronic conditions. I have several. I do remember well the years before the internet. There was practically no information about interstitial cystitis, or the related vulvodynia. I found one book in the library that was full of mis-information. It stated that a person diagnosed with I.C. would have to have their bladder removed within 5 years!! I have no idea where the author came up with that ridiculous concept? Interestingly, I actually found a comprehensive article in “Self ” Magazine. It had all the up to date information, not that there was much. Even today, many in the health profession have never heard of I.C.

Sorry if I am rambling:) It is very difficult to live with invisible painful chronic conditions. Many friends and family members have no idea how limiting and restricting these many conditions are. I don’t believe any of us wants sympathy, just empathy.

I am hopeful that someday all of these conditions will be better understood.

Big thanks to Jeanne for all that she does!!

Darlene

5 DianeNo Gravatar { 04.13.11 at 1:51 pm }

Endochick and Amanda, thanks for the feedback!

6 AnnieNo Gravatar { 04.13.11 at 2:33 pm }

What a difference the internet has made in educating and empowering people with all sort of medical issues! Because of the internet I was able to find a doctor who specializes in my specific issue and also to find and keep in touch with others who have the same problem. I started my blog with the intent of helping others who would find themselves in my same situation and it’s been wonderful to hear from some other women who find the information helpful.

I appreciate your efforts to inform and help others on your blog. It’s so helpful to be able to connect with others who have similar issues.

7 JennNo Gravatar { 04.13.11 at 11:51 pm }

This is very exciting! Thank you for sharing it with us!

8 JeanneNo Gravatar { 04.14.11 at 11:46 pm }

Endochick:

Like you, I have heard from numerous women who found more health information online than from their own doctors. My purpose (for pointing out that I’ve also made this observation) isn’t to bash doctors. There are many wonderful doctors out there. Unfortunately, there are also doctors who do not provide patients with sufficient information… and online information can certainly be helpful.

I think the trickiest part with online information is determining what information is accurate/helpful and what it not. Over the years, I have encountered a few doctors who openly discouraged me from going online for health information. (This is always a turn-off for me). If a doctor wants to encourage patients to be cautious regarding online health-related information, that’s one thing. (Goodness knows there are plenty of sites online that contain misinformation, greedy sales pitches/exploitation of patients, and/or outright lies). To practically forbid patients to go online to look for health-related info is quite another!

There are many amazing, informative, helpful sites where patients can connect with others in similar situations and gain much-needed emotional support. The isolation that chronic illness can lead to can be significant. When patients form online connections and communities to support one another, there is an added dimension to the help they get from information they encounter – in the form of emotional support and validation. Yes, this paper is exciting on many levels!

Angel:

Gee, Angel, why not tell us how you really feel? LOL (I know that “DUH” was aimed at certain unenlightened medical professionals).

I know you are never one to mince words when it comes for your disgust at the number of doctors who, for whatever reason, are not doing enough to help their patients. I know that the medical community has failed you in major ways and I can understand why you are so frustrated.

Over the years, I have certainly had my share of doctors who were frighteningly out of touch or uninformed about topics that fell within their (supposed) area of specialty. I learned early on in my chronic illness journey that I needed to quickly weed out doctors like that and hunt down doctors who would be able to help me heal. I try not to paint the entire medical profession with a broad brush because I have seen both extremes… horrendous doctors (that I fired and replaced) and outstanding doctors (such as the ones I see these days).

It is crucial for patients to advocate for themselves in even the best of circumstances. Even wonderful doctors make mistakes. Even careful and thorough doctors sometimes forget things or confuse one patient with another in this fast-paced “managed care” environment. It really is important for patients to do their own research, ask lots of questions, get additional opinions when needed, etc. I tend to take notes during appointments and I always bring a typed list of what I want to cover in the appointment. Yes, I am the patient who arrives at the appointment with an agenda… literally. Hey… it works! My appointments are far more productive now than in years past when I showed up “unprepared”.

As far as the education of MDs is concerned, this is a loaded topic in and of itself. Let’s just say that some doctors are influenced far too much by Big Pharma, some are not taught things during medical school that they absolutely should be, some are brainwashed, – for lack of a better term – by government agencies (I’ll leave it at that), etc. There is certainly room for improvement. Again, my point is not to bash the entire medical profession. I just understand your frustration that not enough is being done (especially for certain illnesses… for various reasons involving everything from money to politics to various governments’ unwillingness to be forthcoming about certain illnesses).

Being well-informed consumers and health advocates can empower patients to question things that don’t make sense, speak up when potentially dangerous side effects from treatment occur, find doctors who “get it”, etc.

I am so sorry about what happened with your doctor and the test results you mentioned. I know the test you’re referring to and the many hoops you had to go through simply to have that test performed at all. It must have been unbelievably frustrating to have your doctor proceed to deny the truth when the results were literally there in black and white (or was it red?) 😉 Maybe you were just seeing red by then!

Self empowerment and helping others is a wonderful and worthy thing to do and there are so many people working online every day to improve their own health and to help those around them to the best of their ability. I know that you work incredibly hard in your advocacy work and that you help many people in the process. Keep up the good work (while remembering your all-important self-care). Hugs back to you!

Amanda:

I’m sure you will thoroughly enjoy the paper when you re-read it. I understand that you have not been feeling well (and that it’s a lot to take in when one has a “mushy brain”). 😉

It’s unfortunate that the libraries near you aren’t more helpful. I adore my local library and it is brimming with materials. When I compare my current local library with other libraries from places I used to live, the contrast is like night and day in some cases. I didn’t realize when I wrote this post that this is National Library Week in the U.S. What better way to celebrate it than to share this paper that targets librarians regarding health information and how best to serve the needs of information-seekers?

Ah geez, Amanda. I guess you are one of my younger readers. Do you have to rub it in? LOL. Just kidding. Seriously, you are significantly younger than me but also in the age group that remembers life before the Internet. I love using Amazon as a tool as well. Most every book I buy (which isn’t a ton because my local library orders practically every book I ever inquire about)… I buy from Amazon. I love Amazon. Yes, many books only mention endometriosis is passing.

I’m sorry you were unable to access medical journals when you were at the university because of time constraints. I totally agree that it’s a shame that non-academics cannot obtain access to academic libraries for personal research needs. That’s a loaded topic too!

I’m sure you’ll enjoy the article when you re-visit it. It’s very exciting! Thank you for your comment and I hope you are feeling better soon.

Darlene:

Yes, I guess since you’re a mere 39 years old… you would remember the pre-Internet days. 😉

Wow! That’s scary that the book you saw said that! You can’t always believe what you read! As you know, I can relate firsthand to IC and vulvodynia too. It took me 12 years and 4 cystoscopies to so much as get a diagnosis of IC. My vulvodynia dx came later (though it too was undiagnosed long before I had a name for it).

I’m glad you found a comprehensive article in “Self”. I came across an excellent article in “Glamour” the other day about toxins in personal care products. (See link to that article in the blog post below):

The New Toxic Threats to Women’s Health

To be honest, I don’t normally think of either “Self” or “Glamour” as go-to places for health information. However, I believe in giving credit where credit is due. The “Glamour” article was excellent! I’m not sure if I saw the “Self” article you mentioned (at the time) or not but if you found it to be well done, I’m sure it was.

You’re right that in 2011 there are STILL many in the health profession have never heard of I.C.

You’re not rambling at all. It is very difficult to live with invisible painful chronic conditions. Like you said, many friends and family members have no idea how limiting and restricting these many conditions are. Exactly… empathy is extremely helpful. Very few chronically ill patients I have encountered over the years were “looking for sympathy”.

Validation, empathy, understanding, and simple COMPASSION are what many patients want most of all!

I too am hopeful that someday all of these conditions will be better understood.

Big thanks to you for your thoughtful feedback and for, literally, making me laugh daily with your amazing sense of humor. You are a treasure!

Diane:

The comments are a bit out of order as I’ve been having difficulty moderating blog comments efficiently this week thanks to ongoing migraine battles. Thanks for popping in. This post has gotten lots of visitors and I have seen people click off onto the link to view your paper. 😉

Annie:

It really has! I’m so glad the Internet helped you locate a specialist who meets your needs! To meet other women who have had similar experiences is very helpful too! Your blog has some very specific information that I would imagine has been like an oasis in the desert for some of the women who have found it. You have lots of helpful information shared there that could help others.

I appreciate your efforts to inform and help others on your blog. It really, really does help to connect with others who “get it”!

Jenn:

Yes, it is very exciting!! Thank you for stopping by. I know you are having a busy week.

~~~

Jeanne

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