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Wednesday, June 17, 2009

Organize For Patient Modesty/Privacy

By request, to facilitate activists to join together to promote your goals. Add comments here. Many are interested but it will take some real activism to get a group going.
A website is being organized.  Keep watch for more details.

140 comments:

Joel Sherman said...

This is really why this blog was started. I'd be willing to help activists get together. You will need to at least exchange email addresses to get in touch. If you prefer not to publish your email address, you can email me and I can forward it to others. My email is listed under my profile.
As I see it, you need to petition hospitals with your desires and if possible meet with them to discuss it. If there are notable violations and no response, it would then make sense to write to newspapers to try and get publicity or to picket them as a last resort.
As best I can judge, you need to increase your numbers markedly to have much effect. You need many thousands to be able to do this effectively on a nationwide basis though if there is a group in one city or state that could be enough to make a local difference.

Anonymous said...

Dr. Sherman

I have been watching this post waiting for someone to respond. Not sure if that is the case with everyone else or not. I would be glad, and grateful to help with this. I have no idea how to start. I would suggest going to some of the other sites and solicit members. I would be willing to chip in financially to do a web site or something also....what would you suggest. For now I will see about trying to send some people to this site. I want you to know I appreciate the effort...it is very admirable. It does confirm my feeling that most providers are by nature, compassionate people, just sometimes they get in a rut of traditional behaviors.

Joel Sherman said...

I would start by announcing this thread on Bernstein's modesty thread to hopefully interest more people.
You need at least 5-10 people to start. I can forward email addresses of interested people if you send me them so that you can then make contact with each other and decide where you want to go.
Getting your own web site would be a help once you have a starting group of people expressing interest. 'Plain Jane' started one, but never took it anywhere.

Anonymous said...

I agree with you Joel, we'll need to get a large amount of people first before starting a website. Just looking at this from an organizational standpoint, would it be better for someone to create and administer another independent email address to which potential members could send their response for support? May create less email traffic as well. We’ll need to designate some keepers for the email address but it shouldn’t be that difficult to come up with volunteers. Just a thought.
Jimmy

Joel Sherman said...

That's a good idea Jimmy. This is your baby. Why don't you publish here (and on Bernstein) an email address to help gather a core group?
You can use this site to start organizing and arranging details. I'd be happy to offer medically oriented advice as to what I think is useful and appropriate in terms of making your agenda known to the medical community. But I will not take the lead as I'm sure I don't agree with some of your concerns. Ultimately I am far more concerned that every patient be treated appropriately and with respect than I am with individual demands for modesty. I firmly believe that modesty is a secondary goal after proper health care.

Anonymous said...

Joel,

Thanks for the advice, I'll get started on that. I do feel a need to clarify my feelings. I agree that my health is first and foremost, never have I put my modesty in front of that. Every topic that has been discussed here is a concern that I myself have. All I want is a choice in the matter, that would put me at peace. I've only worked with one male nurse through all of my mounting procedures, I've never given the female nurses any trouble but I've never had to deal with being stripped of all my clothing either. I've always made my feelings known upfront and found the care that I needed from both sexes. It's the unnecessary stuff that scares me more than anything. The extensive preps that do nothing to prevent infection and yes I've read several articles that stated so, I just read one on MSN the other day that stated that a nurse that wears his/her wedding ring in the OR is more likely to give that patient an infection than one without, so why are they wearing the ring? Patients are asked to remove all items like that, it needs to work both ways. I will more than likely need to be exposed one day, I realize this but I'd like to have some control over who views and touches me, thats it. They can get the job done if they would just try to address these issues as professionals instead of using their status as the determining factor. Just my feelings. Jimmy

Anonymous said...

Jimmy

You are right on the money. while there the opinions here are wide and diverse, I think the majority are with you. We understand and want our physical well being to be paramount or we wouldn't be coming to the Dr. to start with. I am modest, and have had several procedures that required exposure, (a lump removed from a testicle & hemmroid surgery as well as a colonoscopy), I accepted the fact of what was to come and in most cases was pleasantly surprised with the effort they made, nothing until I was out, etc.....on the other hand, the procedure that really set me off and brought me to this site was a scrotal ultrasound conducted by a female when a male tech was available. Many if not most can accept the situations such as OR's etc. But the when the medical community takes our modesty for granted for their convenience and puts thier rights and feelings infront of ours as the patients....I have a problem with that...even considerate providers such as Dr. Sherman and Dr Bernstien tend to read more into that than we intend. We are not saying modesty is the most important, but often providers hear that when we say we have concerns.....sorry got off the track, Jimmy I would love to help in anyway possible. Let me know where we start, as my daughters have pointed out, I am e-paired but willing JD

Anonymous said...

The email address that I've created is: medical.privacy@yahoo.com

If anyone would like to offer their support, they can send a response to that email address and I'll (while I can manage it) keep up with the responses. It's been a long night so I'll try to get a post on Bernstein's blog tomorrow. Jimmy

Joel Sherman said...

Good luck, Jimmy.
I am fully in favor of modesty and privacy concerns being honored whenever possible. Where the evidence does not fully support traditional practices, such as removal of underwear for surgery in unrelated areas, I think you could carry on an educational campaign which might indeed have some effect. I only balk at those contributors who insist on demanding same gender care which could cause them to get suboptimal care at the large majority of institutions who are not prepared to accommodate them.
In short, I'd put the emphasis on educating institutions that people do care about modesty and how they can best be accommodated.

Anonymous said...

I agree completly with the approach outlined above. Using a website to represent an association...the Patient Privacy Rights Association or whatever could give more legitimacy or wieght to a patient request or issue. It would be important to bring issues that are reasonable and can be accomplished by providers and which would not be unreasonably burdensome for them...i.e. only same gender providers in the ER vs providing colonoscopy shorts, exam shorts, ASKING if a patient had a preference or concern, etc. Otherwise it would be easy to dismiss the group as crackpots. The difficult part is who determines what is resonable, reasonable is relative. It would also be beneficial to use it in a positive way, to recognize things done right to reinforce proper behavior. For instance shortly before my father passed away last year I watched a nurse untie and fold his gown down on his chest, she then spread the fresh gown over him, tied it around his neck, and slid the dirty one out from under the gown, keeping him covered the whole time even though he wasn't really coherent at the time...her consideration touched me deeply. It almost makes sense to consider a core or "board of directors" type arrangement. There has to be some sore of structure, does the group send letters and ask policy questions, send letters of concern, do they attempt to educate facilities proactive, research procedures on behalf of a member...it seems it would be easier to do things that way vs attempting to first get a large group before defining purpose, objectives, and operating procedure. JD

Anonymous said...

I don't know how to get these issues across to facilities, but if some way all facilites could be advised of this issue I suppose would be a start. With just a few patients complaining on a rare occurrence..the administration dismisses it. Perhaps another avenue would be to go through legislators that are on health care committees in the states.
Direct letters to administration and the OR departments is a start.

JS

Anonymous said...

JS,

That'a a good idea and one that's actually been suggested in another topic on this site but who are the legislators that are active in the health care field? I also think we need to build up a membership first before sending or communicating. Two or three people won't grab their attention, but several hundred could. Once I find some free time I'm going to post on all the health groups and work towards that. Once a core is established I think a web site would do us some good to. Jimmy

Anonymous said...

The latest hot-topic on Bernstein's blog has been the double standard that men have to deal with in healthcare. I decided to do a google search on the subject and came across this group called the 'National Organization for Men' who have recognized this gap. Haven't sent them an email or anything, just would like some thoughts or opinions. They cover a range of issues in different areas. Jimmy

http://www.martynemko.com/articles/new-double-standard_id1337

Joel Sherman said...

Jimmy there are many web sites concerned with men’s rights though off hand I don't know any specifically dedicated to medical issues. Most concern divorce and support issues. The new website you describe referred to in the article, the National Organization of Men may be worth looking at, though it is a long way from NOW and other women's advocacy groups.
Good sources of info are the books and articles by Christina Hoff Sommers, especially The War Against Boys

Anonymous said...

Don't expect any sympathy from the
nursing websites. They will have
you banned. Women patients always
get their privacy when at medical
facilities. As far as male patients
go, we're like pieces of meat to be
displayed at a market. Don't expect
to be recieved openly at hospitals
either. They are run by WOMEN nurses and male physicians who only
care about their paychecks. Yes,
some men are part of the problem
as well! Look at state nursing
boards and see who is in trouble
and for what. Do you ever see a
female nurse getting burned for
unprofessional conduct.NO
Its usually for drugs or previous felony conviction. The way to solve
this issue is with MONEY. Money
changes people's attitude. If a
hospital dosen't treat all patients
the same then as men we can boycott
them.

Joel Sherman said...

Anonymous, most hospitals are run by administrators who have a degree in the subject, and are neither nurse nor physician. Certainly a nurse and physician are usually in charge of their respective services though.
It is true that women tend to demand greater privacy than men and usually receive it, but there are also lots of violations of women's privacy. It is just not a high priority most places IMO.
But one thing I agree with, hospitals everywhere are under financial stress and the bottom line is king.

Anonymous said...

Anonymous from April 30th,

Point well taken. I'm honestly not looking for any sympathy from a nursing website, nor would care. Fact is, if this was their husbands or son's feelings, their attitude may change but that's not for me to judge. It's easy for them to ignore our wishes just as it's easy for us to say we should be respected and treated with dignity. One thing that I have learned is that women have been much more vocal at this point than we have. If we want change, we're all going to have to do just as you suggested to an extent and we have to speak up ahead of time instead of after the fact. Saying something after they've done the service isn't going to change anything. One thought that I had was to create, then distribute some type of consent form (or questionnaire) that we would find acceptable, then for those of us who would do so, send it to your local hospitals and post any response you may get? Would be interesting to find out if any would respond. We'd also need to come up with a formal name for this group before sending it out. What are your thoughts/opinions? Jimmy

Anonymous said...

Just to elaborate on the extent
of double standards in health
care let me direct you to this.
There was a time and for some
it is still practiced,that if you
are a young boy who gets an erection while in the hospital
the nurse will strike your testicles with her hand or an object. Many little boys were rendered sterile by this.
go to www.allnurses.com
forums, general nursing discussion
and then eek,theres a woman in my
room.
Now, for a reality check! What
would happen if a physician or a
male nurse were to strike a young
womans nipples. See what I mean.

Joel Sherman said...

I have never seen information on this practice referenced above on dealing with erections, but it was almost certainly uncommon and resulting injuries rare.
See the privacy violations thread from today for further comments.

Anonymous said...

There have been a few opinions of late on how to deal with the problem that we’re all facing here. I’d like to share what I’ve found the most useful to date… the internet. It has a wealth of knowledge that anyone can freely access. When I started having all my orthopedic problems, the first thing I did was go to webmd or some other site and try to figure out for myself what my problem was. After I guessed (correctly I might add three times), I started to read up on the different types of treatment available. Each time I went to see my doctor; I took the guess work out of his job. It also gave me the confidence to say that I know it can be done this way, I’ll go some place else if you can’t provide this care for me. More than anything, I think he knew that this issue was important to me because I took the extra time to research the procedure before my appointments. Before my last procedure, he just asked me what I thought was wrong because he knew I had a pretty good idea upfront. MRI confirmed what I told him, I then spoke to him concerning the prep and type and anesthesia, I told him I had a concern about exposure and would be willing to go through with the procedure if I was allowed to leave my underwear on. He said that would be no problem. I know a doctor’s status makes things uncomfortable for most people, but once you have a competent conversation with him/her, it makes things much easier. That’s just my experience. Jimmy

Anonymous said...

Okay, I'm wanting to start a different blog concerning this topic but would like someone to help me get it going. I don't have alot of blogging experience but I have created the blog, just getting the layout right now. I'm hoping this approach will generate a better response that what I've had thus far. If you'd like to assist, please send me an email. Thanks, Jimmy

Anonymous said...

Well, I hope folks become more aware of this problem. I am a
male employed in healthcare and
as you all know I could write volumes and volumes of the double
standards that exist.

pt

Anonymous said...

I don't believe it is an issue of
modesty. It is an issue of double
standards. The issue of double standard is the issue and the whole
issue. I would like everyone to
visit allnurses.com and under general nursing discussion search
fot the thread "You know your patient is a jerk if". There are some disturbing comments on this
thread. Comments that constantly
allude to penis size and threatening tones. These kind of
comments that put all men in one
category. There are many threads
like this on allnurses.
I am asking everyone to write to
the sponsors of this site. Those include the University of Phoenix located in phoenix arizona. The college network,3815 river crossing pkwy ste 26 indianapolis indiana 46240
Then www.sbsg.org 404-679 4501 just
to name a few. Write or call these
organizations and tell them why
do you sponsor an site that promotes unprofessionalism or hate
towards men. I'm sure these are jerk patients but there are female
patients like this also. You don't read about male nurses writing about their small breats and how they would like to thrust a needle
in their small breasts!

PT

Joel Sherman said...

Finally read through the thread you mention. I agree, it certainly doesn't put nurses in the best light. Although not all of the patients referred to are men, I find it interesting that all of the posters seem to be women. There are no obvious male nurses posting complaints. Are male nurses more tolerant? One wouldn't think so. Feel free to complain to their sponsors.
Physicians are likely more careful what they say about patient encounters, but there are some medical blogs which are equally guilty. Which is better, full candor or a respectful silence? Don't know, depends on the situation. But it is an interesting sample of what they feel is inappropriate behavior. I would agree that most of the examples given represent egregious behavior.

Anonymous said...

PT,

Just read the commentary that you mentioned. I hope this isn't a representation of what all nurses joke about. It seems to me that they are just trying to add some humor in their every day routine just as all of us do; the difference is that they work with human beings, not computers or machinery so there's a big difference. Most of us can say or do what we please with what we work with, we don’t have to worry about rather or not it could have a lasting affect on that individual. Although the double standard is real and needs addressed, I think the problem is runs much deeper than that. Patient care is in need of reform, we all have to set the boundaries so we don’t become the pun of one of these nurses joke.

Jimmy

MER said...

Welcome to the world of the web. Before the web, sociologists and researchers had to gain trust and insert themselves within systems to get the kind of "breakroom" comments and attitudes we're getting on allnurses. Some of the researchers were members of the profession they were researching and so their colleagues were more open to talk with them.

One of the major books connected with this subject is written by an Australian nurse professor, Jocelyn Lawler. The book is called "Behind the Screens." She goes into the philosophical, historical and psychological aspects of nursing and intimate body care, and Western attitudes toward modesty, the body and privacy. She advocates what she calls somology, that is, a hollistic view of body care that considers the whole person. She interviews nurese about this and they are extremely open about their attitudes and feelings about what they do, why the do it, how they do it and how they feel about it. Of course, we don't get the patient point of view. It's a fascinating, well-done book.

I've asked Lawler, via email, about this male modesty issue. The answer I got from her indicated she didn't see it as a really issue, but she said she was open to learning more. I, of course, disagree with her about it not being an issue, but I do highly recommend her book. And I was impressed that she said she was open to the fact that she might be wrong.

With blogs like allnurses, it's difficult to verify as Dr. Bernstein points out, the validity of the comments. But I do think one can use common sense to determine how authentic and individual discussion or post is or is not. When Lawler wrote her book, she didn't have access to blogs like allnurses and our blog. She had to do the interviews and hang out int he breakrooms.

What's happening now, in many professions, is that the breakroom chat is now being published on the web. And although it makes fascinating and often disturbing reading -- and although it makes it easier for sociologists to learn what's happening under the radar --in the case of doctors and nurse and their relationships with patients, I think some of it, like what's pointed out in this discussion, is damaging to the entire healthcare profession. It's extremely damaging to doctor/patient relationships.

I recall on one thread on allnurses, an college instructor who taught medical ethics, got on the thread and said he had showed the discussion to his students. The thread was about male penis size and male intimate procedures, and it was filled with demeaning comments and crude jokes. After viewing it, all the men in his class said that from this point on they wouldn't allow a female nurse to do those kinds of procedure on them.

I don't think we can underestimate how these kinds of unprofessinal threads on all nurses undermine trust and destroy the kinds of intimate relationships needed between doctors/nurses and patients.

Joel Sherman said...

I recall on one thread on allnurses, an college instructor who taught medical ethics, got on the thread and said he had showed the discussion to his students. The thread was about male penis size and male intimate procedures, and it was filled with demeaning comments and crude jokes.

MER, as frightening as that story is, you must remember that if true, and I have no reason to disbelieve it, it occurred in a class setting with students. That is a far cry from the clinical situation with mature nurses of either gender. I'm sure that is the exception on a clinical floor with experienced nurses.
It bothers me more if the instructor let those demeaning comments pass without criticism.

MER said...

I agree with you, Joel. But the point I'm trying to make is that the average patient will never know really what goes on out of his/her hearing on a clinic floor or in the break room. I don't believe the unprofessional comments on that blog represent the vast majority of nurses. But they do damage. Trust is lost. When a patient is in a hospital, all they really know about what's going on is what happens in their room or perhaps nearby.

But I'm not sure what you mean when you write: "It bothers me more if the instructor let those demeaning comments pass without criticism." What comments are you referring to -- the comments on the blog, the comments by the male students? From what I gathered at the time, the instructor opened the topic up for discussion. If I read you correctly, you saying that the instructor should have let the class know that the blog comments were not representative.

I agree. But realistically, the damage was done. Perhaps he shouldn't have even shown the class those comments. As you wrote at the beginning of your last comment, "As frightening as that story is..." Patients read stuff like that and it frightens them. They have no way of knowing what really goes on behind their backs in a hospital setting. When they read comments like that they assume the worst. It's human nature. That's why the newspapers and broadcasts are filled with bad, frightening, scary news. The good is so often overlooked and people focus on the bad.

Joel Sherman said...

MER, I don't know if I fully understood the situation as it happened. All I meant is that I would not allow demeaning comments in my presence without challenging them.
I agree that such scenarios don't reflect well on medicine, but it is a lot to expect students and young trainees to always be professional. Hopefully that's part of what they're learning.

Anonymous said...

Many of the comments on allnurses are very disturbing. Even more disturbing when the moderators let
unprofessional comments continue.
One thread titled "pubic hair"
had something like over 22,000
views whereas a thread such as chest tube only had 800 views.
A perfect example of this on allnurses is a thread under general
discussion called " have you ever
had a patient comment on his size".
Read all the comments carefully,even the originator of the thread. Very very disturbing!

Joel Sherman said...

have you ever had a patient comment on his size

Can't find that thread. Was it deleted? Read some of the other one you mention. Honestly didn't find a lot inappropriate about it. People really ask that kind of stuff.

Anonymous said...

The "size" thread was started by a poster called jlsRN. Pull up her profile and look under "find all threads by jlsRN" and you will find it. It's still there.

Mike

Anonymous said...

As I stated in my last comment, these events that were discussed are what nurse’s deal with every day, just as we have our daily routine, they have theirs. The difference is that most of us don't work with people in the manner that they do. I don't agree with taking an experience with a patient and making it a point of humor. That’s just unprofessional and there are other ways to release the stress that is involved with their job. I have no doubt that the thread was meant to be harmless and to be honest I didn’t find anything troubling except for the discussion on ramming the foley past an obstruction, I just don’t understand why they would even share this information. I’ve been lucky to have never been in a situation that required even the mention of a foley, but if that day comes (and I consent to it!) I’d expect all involved to keep it to themselves. These are personnel matters that should remain as such. Just my two cents…. Jimmy

Joel Sherman said...

Well I found the thread. Like Jimmy I found it mostly appropriate for a nursing forum (though I note it says that some inappropriate posts were deleted). Nurses do need to know how to respond to awkward comments. It's always difficult to know what to say.
Fixation on penis size is a fall out of our toxic Hollywood culture. Look at any medical site for info and you will find that >90% of men are average, and that it makes little difference for sexual pleasure for either partner. When I was young, I never heard of anyone who was concerned about their size. Nowadays literally millions of emails get sent trying to sell phony size enhancers. When in Italy, I noticed that all the famous statues such as David show what we might consider under endowed men. It's a topic that needs airing though few of the posters got to the more important issues such as body image insecurity. But they are nurses, not psychiatrists.

Anonymous said...

This is regarding the thread on allnurses "ever have a patient comment on his size." The nurse
who started the thread is in my
oponion disturbing. She admits that
she is an expert on penis size and
evaluates every male patient in this regard. If I were a male mammography tech and made those kinds of comments openly, I doubt I would be in that line of work for very long.Yes there are male mammo techs out there. In the mid 90's a woman wrote in to ann landers column and made the comment that a male should not be doing mammography. The follow-up comment was made by a Dr. Brian Finkel. An abortionist out of Phoenix arizona. He stated that every male mammo tech should have a chaperone. That same year Dr. Brian Finkel was convicted of molesting his female patients and he is currently serving something like a 105 year prison term. Look him up on the web if you think I'm kidding! Please stop defending these nurses. They are the very reason double standards exist! Go
back and reread the thread. How many nurses were laughing about the thread! I'm sure she never asks
a male patient if he would like another male to any personal procedure. She strikes me as the kind of person who gets a sexual thrill out of it! DISGUSTING!
PT

Anonymous said...

I Know... I don't know when to quit. So, I'm going to start again with a simple question to everyone in this group. What would be the best first step in moving forward to forming this group? Obviously, my first approach didn't work so well although I did receive some responses. Please post your thoughts. Jimmy

Joel Sherman said...

Well here are my thoughts Jimmy.
First I'd start a web site of my own and state your goals e.g. to promote patient privacy or however you want to phrase it. I'd make the goals somewhat general. I wouldn't put the stress necessarily on same gender care, but on respectful care which includes patient choice. Also don't take it from a solely male or female point of view. You need to interest as many people as possible. By all means, give your organization a name. Advertise your group as many places as possible online.
Once organized with some members, try sending mailings to as many hospitals as you can afford to introduce your positions. Members in that locale should contact the hospitals personally.
If you can get to that point, you might be able to generate some national publicity and it could build on its own. You will need some bucks for some of this.

I'm sure many alternative paths for you to take are possible as well. These are only my initial ideas.

Anonymous said...

Joel,

I thought I had left a previous response but must have not saved properly. I agree with the steps that you have outlined. As I've stated, I feel this is more about a person getting to decide what is dignifying to them and that person having the power to say what happens to them. If that can be accomplished, I think the rest of the issues will take care of themselves. That said, if someone where to start a website, how would it be named to get some recognition through search engines and such? How do we make it visible for everyone who is searching for some of the subjects that we’ve discussed? I ask this because it took me several years of searching on and off before I got any hit that led me to Dr.Bernstein’s site. Do you understand what I’m talking about? Jimmy

Joel Sherman said...

I'm not sure I have any great ideas Jimmy. There are lots of sites concerned with privacy rights, but most are concerned with HIPAA and information transfer. Because of that I'd put the stress on respectful dignified care and patient choice. Obviously having ones modesty respected is a large part of it. Maybe giving the website a long subtitle incorporating all the key words would help you being found by searches.
One offhand suggestion for a name might be Americans for Dignified Healthcare: An organization dedicated to promoting respectful dignified health care for people concerned with patient choice, respectful care and modesty. -Just my thought.

Anonymous said...

If you guys get something going I'll do whatever I can to help. This unfair and unethical pattern has to stop. I'll keep my eye on this blog.

DG

Joel Sherman said...

I noted this ad today on Craigslist by an anonymous person who wants to organize for medical privacy and modesty.
I have no idea who this is or whether they have any relation to this or Bernstein's blog, but it should be of interest to many of the readers here. As he/she is asking for money to get organized, I would certainly want more details. If anyone finds out more, please post details.

Anonymous said...

Thanks for the link Joel, I've emailed the contact and posted links to both this site and Dr.Bernstein's (hope that was okay). I'll post the response I get or maybe they'll post themselves as I offered. Jimmy

Anonymous said...

Well, the post has expired and I never received a response. Maybe they will respond at a later date? Jimmy

Anonymous said...

I have taken the liberty of inviting some posters from teh article by Dr. Orrange to post here. alan thinks it is a good idea too.. maybe we can work out a plan for doing more than sahring feelings...
leemac

Anonymous said...

I woul like to start a discussion Jimmy and I had a brief start on, The discussion is where to start. Do we solict membership and then start a web...or the other way around. I had a website built for my company for under $500. Personally I think the way to start is to get a core of 5-6 people, solict input from everyone then the core would decide the nature of the site and have it built. I would have no problem funding the 500 for a site personally but there is are numerous decisions to be made. One has to hope it would grow into something substantial and I have limited time should it be successful. Therefore a core of 5-6 people who could not only determine the "personality" of the site but also spread the load would be needed. Some of the items we are looking at what is the focus of the site, patient modesty, patient rights, what would be on the site...would it be best practices, resources, educational, tabs for links such as JACHO, specialty tabs for male modesty, pelic exams, etc...should we have a tab by state or region where we could list modesty friendly facilities with contacts to facilities that people have experienced people/facilities that were open or helpful. Would we be an advocacy group that would contact providers for members...if so how do we negotiate privacy and HIPPA, how do we avoid slander issues, etc....I think if we could create a decent web site, we could use it to recruit membership and lever that. If hospital X got a letter from "Patients Rights Association" with 10,000 members..it warrents a little more attention than if John Doe complains....but what we can't do is have someone representing the site contacting or posting something that could get us sued....once that happens then it becomes how do we get known....how do we make people aware of the site...so..........what do you all think...is this something any one would be interested in exploring or at least providing input.....

Anonymous said...

oops sorry, that post suggesting a web site was alan...my daughter once told me I was an e-tard....which explains my inablity to have a blogger ID

Joel Sherman said...

I have copied this post here from another thread:

How can we use the fact that health care is going to make changes because of the current ecomic condition (it may have the effect of giving them an excuse to dismiss our position out of hand)Because health car is one of the two most touted fields that is still growing does anyone have any ides on how to get ..I thik we can piggy back teh issues somehow...by pusing for more males to be accepted into teh schools for these fields, but that won't be the only answer.
leemac

Anonymous said...

leemac,
I have been struggling with the same issue, I am waiting for out state session to be over so I can meet with my state rep again...I plan on making this a routine. My push with him is going to be multipi pronged. One there is a huge nurse shortage which is going to effect not only care but costs, there are 1,000's of males displaced from manufacturing and management whose jobs will never come back. Getting males into health care will benefit the older voter who is going to need additional care, business who is funding health care, and may help encourage males to use health care sooner and more frequently which will drive down cost as prevention is cheaper than curing. There is was a program called are you man enough to be a nurse our of oregon that was successful. I understand it is lisc. and will look into it. I tried contacting the guy who writes Male Nurse Mag from Indiana but he has not replied. If you would see if you could get us a contact for any Male Nursing Organizations perhaps we can share and get something rolling there....alan

cjahobson said...

Hi,

This sounds great but there are many of us not in the US. (I am in Austrlia).

So should we have our own site, or be a subset of yours? Not sure. Perhaps other non US posters might like to respond.
Chris

Anonymous said...

chris, I think while some parts may be different..there will also be some common ground and perhaps we can start to gether, use the common aspects and then add our individual needs, ie in where I live we have state legilsators as well as federal or national legislators. Our state representative deal only with local issues and are more accessible, that may not be the way it works in other states...so lets share the common and go from there...think that will work?

Maurice Bernstein, M.D. said...

I noted on my blog that I wouldn't get involved in participating in the development of an activistic program with the goal to make the changes in the medical system you all desire. However, I would stongly suggest that you start with a blog (why not through blogger.com--it's free) with the blog titled as the name of your organization. The function of the blog would be purely for developing and publicizing the organization. For all the issue discussions and ventilations continue to use this blog or mine. Anyway, that is my suggestion. Good luck. ..Maurice.

Joel Sherman said...

ESF posted this link under the gender in healthcare thread, but it needs to be highlighted here as well.
Congressman Murphy of PA has proposed an office of men's health to be established.
I'd recommend that those of us who care bring the bill to the attention of their own congressman.

Anonymous said...

I have really liked many suggestions I've read here, particularly the one about providing a list of modesty friendly facilities. I would like to be involved but admit that I'm not quite as educated on these topics as most of you guys seem to be. But I'm willing to take the time to try some of your suggestions (emailing or writing to influential people, etc) if you can point me in the right direction. Just let me know what a "dimwit willing to spend time" can do. I can at least do what I can to represent my area of the U.S.

DG

Anonymous said...

DG keep monitoring this section, I am going to try to get a couple more to come here them possibly set something up to try to start something. Seems we have a lot of upset people,...but not many are stepping forward to do something...I will try to get back to you here.

thanks

alan

Hexanchus said...

Alan,

As you may have guessed from my intermittent appearances on Dr. B's blog, my occupation frequently sends me TDY on various projects, which severely limits my available time. Within those limitations, I would be interested in helping if I can.

Anonymous said...

Just a reminder that everyone is still welcome to send me their contact info @ medical.privacy@yahoo.com if you still are interesting in starting a group. Again, I think once we get a core together, we can focus on getting the word out. Please see my responce on Dr.Bernstein's blog with regard to the survey/questions that he proposed. I hoping to get some responses. Jimmy

Joel Sherman said...

I would also like to second that everyone who cares about men's health issues give strong support to Congressman Murphy and his H.R. 2115, the “Men and Families Health Care Act of 2009." If that bill is passed, it would give you another vehicle to push all the issues that arise here. I don't know the status of the bill, but I certainly wouldn't assume its passage is a given.
Alan and others, I also agree that the sooner you open a website of your own, the better off you'll be. It could take months to years for it muster a critical level of support, but there seems to be enough people out there. They just don't all frequent this and Bernstein's blog. But the word slowly gets out.

Anonymous said...

I am going to throw out a couple of websites I have come across as exemplars in setting up a male modesty website. Neither of these two sites gets into the subject of male medical modesty that I have been able to discover but they do have overall value as far as the health of men are concerned.




http://www.mens-rights.net/

http://www.menshealthnetwork.org/

Mike (58flyer)

Joel Sherman said...

Thanks Mike. The men's health network should be of value. I'll have to research them a bit. They seem like a group worth supporting.
The other group is non medical but may be of interest to some here.

Anonymous said...

I was researching any legal problems that we might have if we posted the "gender friendly" facilities. The main problem I seemed to be facing was the yes/no section. Example:
Do you provide all female services for Women.(usually yes)
Do you provide all male services for Men?(always no)
If they don't want to be publicly shown as gender UNfriendly to men, they will request to be legally pulled from the site.
swf

MER said...

How about this?

Send out questions to clinics in one city. Start with one city. Ask accommoation questions like the ones you've shown here.

Post the answers.

If they don't respond, list them as not responding. By not responding, they're suggesting that they won't accommodate. That's not necessarily so, but that's how it appears.

I don't see how they could opt out of being on the site, legally or any other way. They don't have to answer the questions, and the website could report that. If they answer, the website can report that, too.

It would help, though, if the site is represented by an existing organization that has some clout.

Joel Sherman said...

swf, I too don't see how you have a legal problem unless you agreed to give the hospitals a veto before they answered the survey. As long as what you publish or claim is true, you cannot be liable for anything in my non-legal opinion.
But even if you did promise the hospitals or institutions a veto, you can still publish the general results, e.g. 75% of them promised to offer women same gender care whereas none of them would consider it for men. That would get some people's attention. At least it would raise the issue. Most people have never even heard of same gender care for men. It would be a consciousness raiser.

Anonymous said...

That I think is one of the main concerns/challenges for a group or web site. Who ever runs it would have to be responsible to only publish accurate data not make unfounded accusations. If we contacted a hospital and asked, if they answered yes to female and no to male and we stated just those facts and kept back up we would have little liablity. If we interpeted that with a "obviously they do not care about male health care....now we have problem. We will also have to think through things like how could we take a persons concerns. if I contact the site and say this or that happened at X facility we would not be able to get them to respond to inquiries due to personal privacy issues. We could use scenerio's or get releases....now in my case I would be happy to say...X hospital told me they could provide a same gender provider if I scheduled through central scheduling for imaging appointments, X hospital in X said if I gave them advance notice they would be able to schedule a male tech for male urological procedures such as cysto or urodynamics....those are a couple of actual inquiries I have made just to check things out, the first actually came from a complaint I filed and they said they changed proceedures as a result....there are some good things that we could post that would not only point out the positive in a facility...but put pressure on those who don't to compete. If they give a negative as long as we give them facts only...we should be ok. Once again, I would put forth I would be willing to put some finances forward for a web site and or legal advice....I feel very strongly about this and really want to move it forward...I am really glad to see some discussions start on this...Dr. Sherman, this would be a great 1st article. Dr. Bernstein is posting a link here...I have a few e-mail addresses and will continue to recruit....I am going to be out of touch for a week, but hopefully when I get back I can joing with you all to get something moving....I am a little more optomistic with this little flurry here....it only takes a spark...alan

MER said...

Another thing: We should try to get copies of patient exit interviews hospitals do. That would show us the questions they are asking. My guess is that they're not asking about patient modesty, and as Joel has suggested, when they ask if you were treated with respect, there's no definition -- although, I suppose a patient could define respect within the survey.

Once we see what these survey look like, we can create a new one, or at least add a few specific questions. Hospitals in general will resist asking specific questions about modesty, I believe. But we can also post on a website hospitals that don't ask these questions and refuse to consider using them on their surveys.

Getting these kinds of questions on surveys is an important part of what we need to do. Once the data is available, the profession must confront the issue. I've been trying to do this with one particular hospital and have been running into all kinds of excuses. But I'm not going away.

Anonymous said...

MER:
As I mentioned on the other side, the exit surveys I am trying to get copies of are the Cal/Nev affiliates to "CHART". We can see any CHART hospital ratings by percent online (and the headings are of course vague) but I wanted to see what questions were actually asked when they say "Emotional Support", "Physical Comfort", or "Respect For Patient Preferences".
I'm guessing gender preference isn't actually stated, but I could be wrong. It could be a useful tool in seeing how to build ours. I will let everyone know what is asked when I get them..
If you do check out CHART, note the disclaimer.

swf

Joel Sherman said...

Any of you know anything about this site which appears to be brand new? It is a site dedicated to patient modesty and is asking for complaints and stories. Looks like it is still in the formative stage. They have an ad for all female obstetrical care but seem also to be aware of the issues for men.

MER said...

Joel:

It's an interesting site. This is what it says under tips for doctors and nurses:

"If a male patient requests an all male medical team for surgery, please work hard to accomodate his wish. If you see that this is not possible, please consider rescheduling the surgery to another date when you can be assured of an all male medical team. You can check with the hospital where the surgery will take place. We understand that sometimes there are not enough male nurses. You should allow the patient to wear as much as he can. For example, there's no reason for him to take his underwear off for many types of surgeries. One man had a wrist reconstruction surgery with his pants left on."

Under tips for hospitals is says:

"We encourage you to hire a good number of male nurses for all shifts so you all can have enough male nurses do intimate procedures on male patients. Hire enough male scrubs for male patients who have surgeries. Try to work on a schedule where male nurses and scrubs would be often assigned to male patients. Many men are uncomfortable with having female nurses or scrubs see their private parts. Modesty is important to many men."

Under "About Us" there's nothing. That does disturb me somewhat. I think anonymous sites like this may do more harm than good. For a site to have any credibility, one must know the credibility of the people behind the site. The fact that it focus on male modesty equally with female modesty, suggests that it has been started by someone who may be reading or contributing to yours or Dr. Bernstein's site.

I hope the people doing this will come out of the closet and let us know who they are.

Joel Sherman said...

MER, I think the site is being developed as we talk as more has been added since I first found it.
I too agree that they need to identify themselves.
Please note it is a commercial site so it's hard to know exactly what their motives are.
The stories have been added since this morning. Some I have seen before. This may mean that the people who've been victimized are behind the site, though honestly it is more likely that they are pirating other posts. This site needs watching.

swf said...

I thought it a little odd. If any of your doctors are lesbians you can't advertise there? I read further and it is extremely faith based(nothing wrong with that) But I feel uncomfortable with the general tone of the site. I feel misrepresented.

Joel Sherman said...

swf, I couldn't find any comment about lesbians advertising, but if that is there it does seem strange, possibly illegal.
I note that the only other present link on the site is to the 'how husbands feel' group on yahoo. I believe that a Mike from that group has been active in the past on these blogs. I found their views rather extreme, but they are welcome to their opinions.
They do seem to have a religious basis for their views which certainly differs from the majority here. But probably any additional voices for modesty are a bonus. Maybe it will encourage the group here to speed up their efforts as well.

Anonymous said...

If you click on the pink advertisement icon, they list their rules for their site. No lesbians is one.

Joel Sherman said...

Yes, I found the statement about no lesbians now.
It is rather startling. In many states it is illegal to ask about sexual orientation. In fact, most women's clinics don't advertise that they are all female for the same reason. Gender discrimination in employment is illegal everywhere. Usually the physicians are listed on a site and anyone can tell that they are all women without having to ask. A BFOQ has been upheld in some jurisdictions for nurses in ob-gyne, but nowhere would it be legal to restrict desk help that I know of. Not that the issue has ever been raised. Not many men would apply for any job in a women's clinic. In short, most women's clinics don't advertise that they only hire women because of legal issues. It can be assumed that they are all females anyway. On the other hand they can say that they honor gender preferences for care. Men's clinics could do that too.
I once looked in an Ob-Gyne journal at their employment ads. There were many ads, but not one specified that they were looking for a specific gender. I don't think the journals would accept an ad that restricted.

MER said...

"Usually the physicians are listed on a site and anyone can tell that they are all women without having to ask."

I've been surprised at the ad sites I see where the doctors are listed as "Dr. Smith, Dr. Jones, etc." No first names. I wonder if this is done to disguise the gender.

Not all Women's Clinics have all female staff. My wife went to one that had male doctors. The other staff was all female. But the poit is that women can be assured of having an all female time if they choose. To some it doesn't matter if their doctor is male.

Re this new site. I'm a bit leary of it. There's something about the writing style that doesn't appear as polished as I would expect a professional site to be. Why a commercial site? Why not a non profit? Who is behind it?

The expectation seems to be that doctors and hospitals will read the information on the site and become enlightened. I don't believe that's how it works, especially when you don't who it is that is offering this advice.

Joel Sherman said...

MER, there are 4-5 women's clinics in my area. But to be fair, most of them are really ob-gyne specialists who just call themselves a women's center. They don't offer general medical care. These clinics' providers all list their full names. Most, but not all have a male physician. As sign of the times, he is usually the senior physician in the group. But if they don't list their first name, maybe they are indeed trying to hide gender.

I can't imagine that the new site will be a hit with professionals especially given the legal risk of guaranteeing that you don't hire lesbians. It certainly bears watching though.

swf said...

I think the advantage to our site (as I see the rough plans here) is that we would have more information available and a less bias tone. Facilities need not be ALL MALE or ALL FEMALE on property. There are male and female DR.s where I go, and a male and female PA. This would be unacceptable on the other site if any opposite gender is there at all. (in their policy rules)
It just surprises me that they took the time and money to have this wonderful site built, and didn't hire someone to polish it.
However, although I am really offended by some of the contents of their site...I have to give them credit for actually doing something about their convictions.

Anonymous said...

About the site:

I have the same opinion as most, but it's still a start. Many of the stories posted I recall reading on Bernstein's blog so I'm sure the owner/s has posted before. I actually sent them an email inviting them to this organize thread to post (maybe we could ask some questions). It may be the same one that had a short lived myspace add (or something) wanting donations to help start a group. I emailed them but never received a response. I think it's worth keeping an eye on and maybe they'll respond or post here. Jimmy

Misty said...

I am the owner of http://www.patientmodesty.org. I was very pleased to see this blog. I am in the process of trying to start a new non-profit organization that promotes stronger patient modesty. Please be sure you check out the About Us Page to see what we would like to accomplish. We are looking for donations to fund this non-profit organization.

Joel Sherman said...

swf posted 4 days ago and I seem to have lost the post somehow.
So I'm reposting it here. Sorry.

swf has left a new comment on your post "Cancer Rx & privacy: My Angels Are Come":

Just curious.....

I havn't seen much on organize for awhile. It seemed as if we were so close to getting our group expanded and defined. Can anyone update me? Use my email if you choose or find it to be more appropriate.
Thanx

Anonymous said...

Thanks Misty. Keep it up.

swf said...

Alan started a dialog on Dr. B's blog responding to a few inquiries and inviting people to read and post here about updates and opinions on web site progress. I will get the ball rolling and carry it over to here.
We are narrowing the name to a few options..if anyone wanted to comment. Advocates For Patient Modesty/Medical Modesty Advocates/Advocates For Medical Modesty are a few.
We are investigating web addresses and possible/probable ratio hits.

swf said...

It looks like the name "Advocates For Patient Modesty' is a go. We believe the term 'advocates' sets a positive tone and implies honest goals.
I don't know if we want to go techno here, but we have a large domain choice. (Funny; I am still surprised that more groups have not tied this up) I have suggestions for the address as far as 'hit lists' if anyone wants to dicuss it, as well as hosts. I found one that gives us a higher thread count than the rest. We are limited, so we need to use our hit list to the greatest advantage.
I would suggest getting the host up front for the year, as it gives us more host options of service.
Any ideas on web tone?

Joel Sherman said...

I would still suggest that you work in the idea of respectful care along with modesty.
There are many more patients who can accept some compromises with their privacy and modesty as long as they are treated with respect. I think Art Stump is an example of that. He did not object to one on one opposite gender care by caring professionals, but he and all of us are horrified by the thought of our care being turned into a spectacle to satisfy other agendas, in Art's case, the hospital's agenda to attract more potential employees.

Anonymous said...

swf could you elaborate on the "getting the host upfront for a year" I am really e-limited.

I would like to start getting thoughts on the content of the web site. I would say it goes to two general catagories which bread down from there information and interaction. For instance if we go to the point of interacting with providers on behalf of someone etc....I would like to consider a state by state registry of modesty or gender friendly facilities, a grid with what they would provide etc...anyone got thoughts or idea's .......alan

swf said...

alan: If you pay one host up front for a year it's cheaper and you get wider host options. It's just the current promo.
Some people buy two hosts, but I think that's a waste of money, especially if we play our threads right.
Dr. Sherman: I absolutely agree. This is where compromise comes into play. While I am an advocate for same gender intimate care, I do see those who are willing to compromise in situations. For example, I read(will try to find it) a letter from a male who couldn't find all male staff anywhere for a colonoscopy. Options/Solutions: He stayed virtually awake, the staff supplied him with modesty clothing, and even a curtain between him and the female tech. I would say they went out of their way to do the proceedure as best as they could to meet his modesty needs. Now some would say that's not enough, but others might feel respected enough to do the proceedure. While I don't consider this in the 'gender friendly' catagory, they would certainly fall into an options catagory. Does anyone have an objection to including options in the site, or do you want more of a stricter tone of gender friendly only?
Perhaps we have to be realistic and admit that everyone will not always get exactly what they want as far as modesty, and perhaps a few options like this would be enough to mitigate their concerns. I know this is not exactly what you meant Dr. Sherman, and perhaps someone who has the same outlook as (for example) Mr. Stump could more appropriatley weave that into the mix.
Alan: I like the idea of a state by state registry. Do you see this as a yes and no of gender friendly facilities?

Anonymous said...

Great work you guys, especially swf. I also like the "state by state registry" idea.

Similar to Alan, I'm pretty e-limited, but will do what little I can to help.

GL

Anonymous said...

if you go too far with options you lose your point! pick a purpose.

Anonymous said...

OK I get you SWF, one thing we need to be sure is to own our domain, pay for the development but own it so we can move to another host if needed. That is how I have my business set up I own the URL to it incase I have to change hosts.
I would see more of a grid of specific items followed by a little narative and info...ie
The grid:

are both genders available for imaging Y or N
Are patients asked in intake if there is a preference of gender for intimate exams Y or N
etc and then perhaps link each facility to a page for naratives and into ie. do they have a patient advocate and contact info...personal experiences with that facility...for instance I had an experience at Porter Hospital in northern Indiana, I talked with the patient advocate and head of the imaging department and they were so impressive in the way the responded to my concerns i would want to list them and thier facility and give my experience...on the other hand I just talked to a facility that while decent....do not have any male techs for imaging including things like cystro's, testicular ultra sounds, etc....that also should be noted but a simple Y N grid could do that......don't know if that makes sense or not...but if there was a grid with some basics, if I needed an ultrasound and wanted a male, looked at teh grid and saw they did not have one....so be it I could look at the surrounding facilities, on the other hand if i wanted a male, but it wasn't an absolute, might want to see if there was a link to others experience at the facility or contact info....this isn't a same gender web site or effort, it is patient choice, so don't care, some do but will accept if...others just won't...to me that is what this is about, letting people know they have the right to choose for themselves and equip them with the tools and confidence to deal with it.....it also puts facilities on notice they are being looked at and rated from this perspective.......alan

swf said...

Anon: We need to present choices. Some people go without any care at all because of the gender issue when they might be able to find something they could accept. But, if same gender is what you are looking for, we will have that info too. These options do not conflict with each other.
Alan: Yes, I think I get the grid idea. I like the idea of comment pages linked to the facilities.
(I am just learning about all of the web stuff, so thanx for the patience.)
Perhaps that's where Dr. Sherman's thought could tie in about respectful care?

Anonymous said...

What would a mission statement read for this site. What would be the opening statement that sets the tone.....We believe that each patient is an individual and as such has specific preferences and needs including what accomodations they require to maximize confort when their modesty must be compromised in the medical experience. Our mission it to act as a liason between patients and providers in establishing, understanding, and executing the policies and procedures essential to that end. When appropriate we will act as advocates for patients to acheive that goal through interaction, education, and referals to both patients and providers.....something like that.....any thoughts....alan

Joel Sherman said...

Alan, I think that's a good start.
How far do you think you can go advocating for an individual patient? That sounds like an ambitious goal.

MER said...

alan -- all of what you say is fine. I think, though, that education should be a primary mission. Here's what I wrote on another thread:
Don't missumderstand what I'm saying. The follow up letters are important and need to be written. They create a paper trail.
But I think there's a serious need to educate patients to be more assertive. We don't want to frighten patients, make them think that modesty violations are the standard. I don't believe they are. We don't want to make patients think they go into a hospital situation expecting this. But we need to give them the ammunition and the self-confidence to confront the situation when it arises -- or even better -- be proactive to try to prevent it from arising.
This is one major mission of a group that people are talking about starting for patients. I can see producing a pamphlet about this that we could try to get hospitals to distribute -- or we could find some other way to distribute them.

swf said...

I think the entire venture is ambitious, but worth the time doing. I could have misunderstood liason as alan used it, but I gathered he meant we were being a liason with the information available between patient and provider, but actual advocate later when information is gathered. Information and education will be at the point of publishing the site, and advocating will be later when we have seen if we can create a relationship with providers. (?)
I agree that we do not want to frighten patients thinking that modesty violations are standard, but I think the site will be visited because modesty concerns are standard. Perhaps not in all of the same forms, but very common.
I see the site as education and options up front, but what a great service if someday we could advocate as well.

Anonymous said...

SWF has the jest, the process.....and it is a process, this is realatively new territory, not something you can just come up with a plan, wave a wand and wa la. I do have a day job, and we have no idea what to expect, will this be 1 event a weel, 100?...1000? we have no idea, are these blogs 1000's of people or a few people posting 1000's of enteries....we need to educate, that is part of the value of the web site, but we have to at least plan for something bigger, if patients had an outlet where they could ask for intervention by a third party if they could not achieve satisfaction.....that would be the next step....which would bet the attention of a non responsive facility/provider. A single patient, or an organization that would/could post the issue for all to see. From a business perspective....dream big, act conservatively.....plan for both.....alan

Joel Sherman said...

Hard to predict what the response will be, probably small to start with. Just remember that it takes quite awhile to build up a following, likely several years.

swf said...

I agree that we have to be creative on 'getting the word out' about the site....much like Mer's idea of a pamphlet. Info is great, but people have to know it's there as opposed to stumbling upon it.

Joel Sherman said...

swf,
With the hundreds of millions of websites, no one will stumble upon it accidentally. When you're up and running, I will add you to the links section and hopefully Bernstein will too. Ask him.
But beyond that, most people who are looking do it thru search engines, Google being the most popular. Good to think about having your title include as many key words as possible that people might search on for info in these areas.

Anonymous said...

that is the question, how to get the word out to those who were as we were, taking it without realizing they have power or choice...personally once we get something refined I intend to take some ads out in newspapers just to see what we can generate....it takes money to advertise so its a little chicken and egg...but its worth a try and I like the suggestion of using multiple words...alan

swf said...

Thanks Dr. Sherman for your support.
Yes, we have been dinking around with the actual address getting the most hits and threading out from there. I personally eventually found Dr. B. by searching privacy....then I believe this site by referral from his. There are some combo's not taken yet regarding the words patient/modesty/privacy. And the availabilty depends on the host.... and .com/.net/.etc.
I like Mer's idea of a pamphlet, and was wondering if we would use it in conjuction to the site.
Mer: Perhaps you meant this as stand alone info?

MER said...

swf -- I think a download pampalet would be a good place to start for the site. The audience should be patients, specifically patients headed for procedures, operations, exams or hospitalizations that will or may involve intimate care. The pamphlet could highlight a list of these procedures.

The goal should be to emphasize patient responsibility in letting caregivers know their (the patient's) expectations regarding modesty and privacy. We don't want to get into scare tactics and frighten people. But we might mention, as I said, specific kinds of treatment where you should expect opposite gender care (esp. for men) unless you make your wishes known.

We could eventually have specific pamplets like, "Planning your visit to the urologist." OR "Planning your trip to the dermatologist." OR include several of those within one pamphlet.

The goal would be to off set the old "ambush" we've been writing about. In other words, this is what you may get unless you plan ahead. And if you do plan ahead, and still get what you don't want, here are some strategies to use rather than just shutting up and letting it happen.

Joel Sherman said...

Yes pamphlets are a good idea.
But unless you want to spend a fortune, you can make them e-pamphlets that you click on from your website. This can be very professionally done. For an example of this look at my last post on the women's thread and click on the pamphlet from the ACOG.

swf said...

I like the idea and this is why....a lot of people may FEEL empowered with information on the site, but still have problems with face to face 'conflicts'. By nature, this is why they have not asked for intimate options. A print out could really help them open the conversation when it comes time to speak with the provider. I realize we can only go so far and then the empowerment has to be their's, but I absolutely know of people that a tool in hand such as this would help.
However (unless I got this wrong and someone please correct me) each 'page' on a site cost more. We may have to consolidate two ideas to one place, or wait to add it later.

Anonymous said...

I think something that this site can provide is information and information is power. One of the problems we have discussed is the fact that many people don't know there is an issue until they have been through it. Even so, once someone has been through and begins to search, we can help their search for solutions be shorter than ours has been. My company web site was a flat rate and not that expensive...we tabbed I believe 6-8 pages from the home site for about $3-400. The key I think is to get as much right on the start and then plan for the future, put the tabs and just put a under construction page under that tab.....its more time than money.........alan

MER said...

Another possibility:
A general downloadable pamphlet -- brief -- that's designed for patients to hand to their caregivers. It would briefly outline modesty concerns, confront the fact that patients (and providers) don't often feel comfortable talking about this issue, and stating that the patient has handed the provider this pamphlet to help open up the discussion.
I don't know how to deal with people who have had little hospital experience and are completely unfamiliar with modesty issues. They tend to just blow this subject off. I've had experiences with people like this -- whose whole attiutde changes after they've been hospitalized and have had their dignity/modesty/privacy violated. Now they are more conscious. I guess they'll just have to learn the hard way. Though, the general paphlet can address this issue -- making the point that you may not know really how you feel about this until you're confronted with it.

swf said...

alan: My apologies to the group: as much as I have called and as hard as I have tried, I can not beat the cost of your website builder. To get it done and up, with no extra page costs, is pretty amazing in (around) your builder's price range. There is one cheaper option, but I don't think we really want to go that way. A monthly fee and they build a basic site. But I think they own the domaine and we couldn't leave if we needed to! Perhaps even more expensive in the longrun. For some reason, these are becoming more popular.

Mer: That is exactly how I see it. Many people have the need and will to discuss this with their provider, just not the courage to initiate the conversation. A printout in hand could break the wall of silence.
Also "I don't know how to deal with people who have had little hospital experience and are completely unfamiliar with modesty issues. " I believe we could use one of our threads and agree on one the most common proceedures where modesty could be a surprise concern and link to that. Lots of people search the web for "how is that done' information.

Joel Sherman said...

I'm sure you've seen the comment by Hexanchus on Bernstein from Thursday, September 24, 2009 10:44:00 AM.
I would second it and suggest you include similar forms from patients to present to doctors or hospitals when they go in for treatments.

Anonymous said...

Thank you everyone for all you're doing, especially Dr. Sherman. I think you guys are great.

MER said...

As we've been discussing on Dr. Bernstein's blog, we could have a form that the patient fills out that address this modesty and gives the patient a chance using a check list and perhaps some writing to clearly state his or her preferences in the regard. The form would say at the top that the patient wants this form to become a permanent part of his/her record. As I asked on Bernstein's blog, can a patient insist a form like this be included in his permanent medical files?

Joel Sherman said...

MER, if you give an office an information sheet of any kind they will likely put it with your file and keep it on the record. We do that all the time. It doesn't mean that the physician will remember it or look at it every time you come for a visit though. There's no way to guarantee that.
I suppose there could be a problem if an office has an all digital file and keeps nothing on paper, but I would think that would be very uncommon.

Anonymous said...

MER: I know Jimmy is working on learning to build web site. While my builder was really reasonable...I have to think it may make more sense to have one of us (like Jimmy) so it can be modified as needed. But, if it makes more sense we can look at using him. I really like the idea of providing a printed statement that the patient can fill out and ask to be included in their file. While we can't expect providers to remember everything about everyone...I bet the incident would be so unique they would remeber the first ones, and if it became so frequent they didn't...I am guessing the light bulb would go on about how important it is. Perhaps I am lucky, I have good insurance, if I provided this and they said they said they would-could not honor it, I would have the ability to say thank you very much, it's been nice knowing you, I will tell you where to send my files. I call it talking with cash...though from my experience, this is rare that they won't when they can. How about this for a thought on the advocacy part of this....send a form to facilites informing them patient(s)have asked us to forward this for their consideration...would they be willing to incorporate it in their intake process. You could list the facility on the site with a yes, no, no response, or other....as a business man it would drive me crazy knowing something negative was out there and not know how many people were seeing it. It could be in a grid of check off items for things like can provide both gender tech etc....we could get this out there with our super bowl ad....ok getting a little ahead of oursleves...that was a joke, not a good one....but a joke none the less.....I am going to contact steer Jimmy and SWF to my web site for reference...and see where/how we go from there....I would really like to hear from folks what they think we should include. I am thinking resources such as links to vendors for surgery & colonscopy shorts, etc as an example, along with forms for them to send etc.....the more views the better, but I think we should try to move to some sort of concrete action by the end of the year or risk this lanquishing for ever.....alan

MER said...

alan -- here's what I recently posted on Bernstein's blog. We can work on this. It shouldn't be too long and answer all questions -- just enough to emphasize the importance of the and open up the discussion.

I offer a few small revisions to Hexanchus's suggestion. And I've made it look like a form. I can see patients handing in a form like this at the receptionist's desk requesting it be read and placed in his file -- and suggesting the office use this form on all patients.


We understand and respect that each individual has his or her own comfort level with respect to privacy and modesty. Please answer the following questions to help us understand your preferences and help us make your visit with us as positive an experience as possible for everyone involved.

1. For non intimate exams or procedures, do you have a preference for the gender of your physician or other caregivers?
_____Male
_____Female
_____Don't Care

2. For intimate exams or procedures, do you have a preference for the gender of your physician, nurses, assistants, or other caregivers?
_____Male
_____Female
_____Don't Care

3. For your comfort, you may request a chaperon be present during any examination or procedure, especially intimate ones requiring any significant degree of exposure. Do you prefer to have a chaperon present during exams?
_____Yes
_____No


4. If yes, do you have a preference as to gender of the chaperon?
_____Male
_____Female

If you have any other specific concerns regarding privacy or modesty, we encourage you to bring them up with your provider at the beginning of your visit, or write them down below.

swf said...

alan: It seems to me many posts ago a letter was being crafted to the various facilities. To be clear as we have spoken about many, I am referencing the one to send to facilities for our grid of providers. I know we want to toss this past legal before we launch a mailer, so I think it might be time to refine it. I have a sort of 'do you provide' or 'do you have options for' draft, which gives AFPM the option of either publishing all information together, or separating gender friendly facilities. Of course a simple answer to that would be something like "gender friendly facilities are listed in red' for example, but that might be a nightmare for Jimmy to build a web code for.

So, my bigger question would be: What is our determinate for posting facilities on our web?
As an example for reference: The 3 ED clinics I found that are staffed exclusively by male providers. I consider that gender friendly. The clinics I found that have male doctors but female urodynamics techs on staff are not really gender friendly to either men or women as a sole facility.
Perhaps we post both for info and reference: I can see that. But.....
We know that we are not going to post every facility in the United States and their options, so maybe we need to think about determining factors.
How do you all see it?

swf said...

Dr. Sherman: May I respond here to an e-mailer who said my question was confusing?

Yes, we have posted in many places regarding facilities. We are trying to meet here to make solid plans. I can't reference all of the posts on all of the blogs for you though.

My question was which do we post and why. Do we start with gender friendly and work from there? Do we include positive experience facilities? I was just saying maybe we need a base to start with.
I can't really tell if that is clearer or not. (?)

Joel Sherman said...

swf, I think it is indeed hard to follow your plans and make helpful suggestions. The main reason for this is that you've never outlined your plans here or on Bernstein that I know of. All I know for sure is that you're getting a website.
The rest is a guess. You're planning on listing gender friendly sites nationwide? It's a huge undertaking. You plan on giving patients tips on how to achieve same gender care to different degrees? That I think is practical. Do you plan on summarizing the kinds of problems patients face from obtaining same gender care to utterly disrespectful care?
At any rate, I'd start with manageable plans, such as supplying valuable information and references, and work your way slowly to developing a large database of recommended care centers.

swf said...
This comment has been removed by the author.
Anonymous said...

swf, I have been working on an outline for a website, I will send it to you, I think a logical start would be to lay out the general format then fill in the sections with the materials and resources. I can send attachments to your and jimmy's e-mail address but don't know how-if to send attachments to the blog......once we agree on that perhaps we can enlist anyone interested to help address a segment. I will send the outline wed.,,,,,,,alan

swf said...

Goals
"Our goal is to help patients achieve dignified and respectful healthcare through education and information. Everyone has different needs and expectations of their heathcare providers, and we provide choices and options in obtaining those needs. We understand that modesty, privacy, and respect are primary needs when facing proceedures, and we promote educating providers in the sensitivity of those needs."

Website goals....something like this? Any thoughts?

Anonymous said...

SWF,

I agree with Dr.Sherman that we should start with just a useful tip section on how to communicate with providers and information on what action to take if you encounter a problem. We've had a lot of post through these blogs of events that occurred so I think it would be valuable to create a tip page and provide links to various medical reporting agencies. We can then build off that. Just my thoughts...Jimmy

swf said...

Jimmy:
I agree that we have to get the very basic things into the site first.
Do you think the 'goals' as stated above encompass that idea of proactive education, or would you change the idea of our goals to a more nuetral position?
Is that what you meant?

Anonymous said...

SWF,

I think the goals that are outlined are well defined and don't need to be changed. Bewond that, I think there are many smaller pieces that need to be in place first (as suggested by a few on here) before we start listing gender friendly sites and what not. Lets get our message out first and build our membership. As that grows, we can expand the site. Does that make sense? Very defined but basic starting out, then let it gain momentum and go from there. We can create a link for people to talk about their experiences, both good and bad to start then cover our legal basis before naming facilities on our site. What do you think? Jimmy

MER said...

Jimmy and swf: I like your mission statement. But don't worry about being neutral. Be fair, but take a stance and support it. Don't equivocate. There's enough lack of real communication about this subject on the web already, especially on hospital and clinic sites. Make your site one that confronts the issue head on and isn't afraid to say it like it is. Patients will respect that. Even the medical profession, even if some may not agree with you, will respect that fact that it's clear where you stand.
Don't be hesitant in the least to stand firm. That's what will make the site unique and bring people to it.

swf said...

I see your point now Jimmy. What I was getting at was that the mailer and facility sites are going to be a big project and months (?) away from the opening the site. I had mentioned ealier that this was a project that I was willing to start now and begin compiling data.
I mentioned determinates to narrow down this project, not to post right away on the site.
Sorry for the confusion.
I'll wait until we are more defined.

Anonymous said...

ALAN Good mission satement

SWF Good goals for the site

JIMMY Good points.


GOOD JOB ALL!

Anonymous said...

I think the first step is to build the basic site. Lay out the tabs that we want to fill in. Provide the basics mission statement, goals, information on items such as JACHO, HIPPA, etc as well as tips such as call before, ask about accomodation, advise to ask if the facility has a patient advocate, provide a couple links to Dr. Sherman & Dr. Bernstein's blogs so they can see they are not alone without us having to recreate and spend time on it. I think it is crucial that before we contact facilities and go into the advocacy side we do something to establish some level of legitimacy. By having a reasonably developed web site we at least give the impression of an organized effort vs a single person. Sorry i didn't get the outline I worked on out, the question is do we have to wait until we are done with it or can we start before. I think if we stick to a questioniare that we plug into a grid without making judgements we should avoid any liablity. When and if we start approaching facilities with specific issues and commenting on answers or results....we will need to be a little more careful, I think SWF's goals are just fine, I think we should establish where we stand, we are not nuetral, we have a definate point of view and purpose...but thats just my ideas, what do you all think? .........alan

Joel Sherman said...

I again agree with you Alan. Build the basic site and tackle the harder parts gradually as you go.
I think you could outline your goals and mission quickly and provide informational material to people, i.e. pamphlets to help patients ask for what they want and what to expect, and perhaps a guideline for what to do if they get turned down.
Provide a feedback or comment section so that you can see how you and your followers are doing.
I see no downside to getting the basic site up soon.

swf said...

Advocates: I have the primary logo ideas posted on "MIAB" and working on the scan thing on my computer to post the actual product. Will post this on DR. B. if I can't catch you here....

Anonymous said...

What happened? Have we given up on a website?

Joel Sherman said...

That comment I second. Is the group still working on it? An occasional update would be nice.

Anonymous said...

Nothing new?

swf said...

A small update....I touched bases with Jimmy, and although things have been hectic with everyone he has agreed to tackle the website himself. (Thanx Jimmy!)
I know these things sort of ebb and flow, but perhaps we can get the flow part going again. And thank you to all who have been expressing interest again....

swf

Anonymous said...

Great job! I will be paying attention and will do what I can to help.

Joel Sherman said...

The following is copied from the gender preferences thread:


swf said...

http://afpmgoals.blogspot.com/

Perhaps anyone interested in working together can revisit the advocacy site where (with permission)ideas from Dr.'s Sherman and Bernstein has been consolidated.

Any new ideas or info updates would be appreciated.
You can check out past great ideas, or post in the general comments.

Renewing interest in the site would be a great step forward. Thanx to all who sent these great ideas flying our way.....

March 25, 2010 6:13 PM


Joel Sherman said...

Thanks swf. I have not been aware of this site until now. Hope everyone will contribute ideas. I will copy your post to the organize thread as well.

March 25, 2010 7:21 PM

swf said...

Thanx Dr. Sherman for posting the advocates in your link section. I just noticed!

swf said...

Dr. Sherman:

We're going to try again to get all those wishing to participate in advocacy efforts to meet in one place. This is an open blog with no comment moderation.
http://advok8.blogspot.com
Lots of new ideas seem to be coming up again, so let's hope everyone wants to work together.
Thanx again for all of support!

Anonymous said...

So how's that goin? I can't find it.

Bea

Joel Sherman said...

You're right Bea. That blog no longer exists. Maybe swf can update us?

Anonymous said...

I'm sorry...I think I updated that info with Dr. Sherman on another comment section of his. But anyway...the url was messed up after a computer crash several months ago. I changed it to
http://patientmodestysolutions.blogspot.com
Thanx for asking "Bea" and Dr. Sherman.

swf

Anonymous said...

FYI....I found it listed under Dr. Sherman's links called "site devoted to patient modesty".

The link takes you to "Patient Modesty Solutions"

swf

Joel Sherman MD said...

This is copied here from the 'announcing a companion blog' thread:

Dr. Sherman, I think a lot of us want to do something, but we don't know where to start, or have the time and or resources to do it. I was thinking of possibly partnering with a couple people to see if we could do a simple organization that would simply be the liason to letting providers know someone had a concern. Many times we patients are intimidated to say anything as we fear we will have to face these folks again. Sending annonomous letters is better than nothing but really dilutes the effect. I thought if there was a resource center that could send it for you. If I had a concern and could email this resource providing them information. They could simply send a copy letter saying a patient of theirs had this concern and asked us to contact you on their behalf for a response. Obviously due to HIPPA the info would have to be somewhat generic not identifying any paticular patient. But it would make them aware of the issue, give them the opportunity to respond, and give us the opportunity to provide them with material such as copies of the articles you have written as well as possibly links to this and Dr. Bernsteins blogs for information. Not ideal, but another step. Many providers may just not respond, but they have the info. I also thought about the possiblity of listing providers who had responded with a positive committment like the one I recieved from a local hospital who said they were instituting protocol of asking patients if they had a gender preference for a list of specific intimate exams...would you be ok with using your articles as such, what are your thoughts on the approach.

May 25, 2011 12:01 PM

Joel Sherman MD said...

Anon, you are welcome to hand out any of my articles.
Your ideas are quite valid and promising. It's just hard to actually develop the project. The two people most interested in pursuing this have been swf (Suzy) or Alan. Don't know how to reach Alan, but Suzy has a website with her email address on it.

Suzy Furno-Maricle said...

We are happy to announce the start of our website project, and invite everyone to read and add their own comments.

http://afpmgoals.blogspot.com

This "construction site" will give everyone a clear vision of expectations...and when seeking volunteers and advice, it will be with a solid direction.
Maybe we can all add a little, and get the goal accomplished soon!

Thanx to everyone....
Suzy

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