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Lifestream Software, Blogging, and Emotional Topics

A post where Melissa gets all nice to doctors…sort of.

This has been on my mind ever since I started using Posterous as an annex space from this blog, instantly uploading pictures, sound files, stories, and videos from my phone. Where I would have had to wait until I returned home from a party or event, hooking my camera up to the computer, downloading and sizing the photos, slowly uploading them individually to my blog, they now are sent instantly and I return home with the whole night already blogged and commented on from people reading at home.

Same goes for using Twitter or Facebook while on the road.  These three pieces of software are but a few of the options out there for creating a lifestream rather than a static blog.

It’s a wonderful and scary new world.

The wonderful part is obvious–thoughts popping up in all corners of the world are accessible and exchanged in real time as events unfold. There is something raw about lifestream writing, unfiltered, unedited.

The scary part takes into consideration a larger picture. Whereas Tweets disappear into the ether and do not show up in a Google search (Twitter does have its own search engine) and Facebook status updates are somewhat protected, sites such as Posterous are not only open to the public unless set otherwise, but these posts are Googleable in the days, months, and years to come. They operate in the same way as a blog, but provide the immediacy of Twitter.

Therefore, when the circumspection afforded by the drive home to get to the computer or the emotional cooling off time after something hurtful has been said now ceases to exist, there is room for regret both on the part of the writer and the object of their wrath.

Doctors, nurses, clinics, and agencies have plenty to fear from the power that live-blogging affords. The online world has become the equivalent of the backyard fence, with bloggers constantly exchanging advice and opinions with one another. It can be a frightening thought in a consumer-driven area of medicine such as fertility treatments or in the area of adoption agencies (not to mention donor gamete or surrogacy agencies), knowing that the information once contained between two people at the backyard fence is now accessible to anyone Googling for information before making a decision about a doctor or agency.  And they are receiving that opinion out of context, without knowing anything about the speaker other than what is shared online. Get enough angry patients stating their thoughts online and the reputation of a clinic or agency can be sullied for future patients.

This, of course, has been true for years with the advent of blogging, but it is the immediacy of sites such as Posterous coupled with the Googleability of those sites that changes the playing field. Prior to this point, if a patient had a bad interaction with a doctor or nurse, that information was tempered with the time it took to get from the clinic to the computer. In that time period, the person may have the emotional clouds part to examine how their actions can affect another person. There are things I’ll consider doing while upset that seem simply hurtful in retrospect when I have time to calm down. Posterous removes the cooling off zone.

And while this may not seem like a problem for patients and therefore none of our concern (after all, it’s hard to feel a lot of empathy when you just ate $10,000 on a failed cycle), it is when you consider it through the lens of HIPAA.  Just as these laws have been set up to protect the privacy of patients, to ensure that doctors are giving the people they care for respect, the impulse needs to flow both ways if patients and doctors want to continue having a respectful relationship.  I am not talking about the micro-level–your relationship to your personal doctor–but an overall climate.  Doctors need to know they can trust patients in order to do their job well.

I think of it in the same way as traffic cameras.  They sound like a good idea in theory–making sure people obey the speed limit–just as stating your opinion online sounds like a good idea in theory–you could protect someone from receiving the same crappy treatment you received.  But the reality of traffic cameras and speed traps is that they cause more traffic accidents because people are focused on not getting a ticket rather than driving well.  Doctors need to focus on practicing medicine and not protecting their reputation.  At least, that’s my feeling.

While the idea of live-blogging pitfalls applies to all health care situations as well as other facets of life including relationships, family interactions, and education, I’ve been looking at it through the lens of infertility since infertility is an emotional disease that thins the skin as time passes in the family-building arena. When emotions are already running high and emotional reserves are depleted, small mistakes can feel huge.

I think there are many things doctors and agencies can preemptively do. A frank discussion can go a long way. Doctors can state their expectations about blogging in regards to patients during the initial interview, explaining why problems with the clinic should be brought to the attention of those able to remedy the situation rather than simply shouting about it on the Internet. Adoption agencies can ask those who are going to blog about their journey to keep their blog set on private.  Just as patients are reminded about HIPAA laws the moment they fill out the paperwork with a new clinic, patients should also be reminded that respect needs to flow both ways.

A way to register a complaint within the clinic (or agency) and have it heard (in other words, follow up given to the patient that shows the clinic is taking the complaint seriously) is key. Doctors should provide a clear-cut way for patients to give the doctor or nurses feedback directly rather than having them turn to the Internet as a way to voice their ire. Provide an email address for someone in charge of patient relations or an online form that patients can fill out after a bad appointment, with the patient understanding that their words are not going to affect their treatment at the clinic (or, in the case of adoption, agency). After getting this information, doctors should follow up with the patient in a timely manner, making sure that as they’re treating the physical side of infertility, they are also doing their part to make the emotional side easier.

Doctors and agencies finding poor reviews of their service online shouldn’t write off the words as simply angry spoutings from a thin-skinned patient. Instead, use that information to make tweaks in service and address concerns not with the patient directly (which doesn’t allow both parties to save face and feel comfortable), but with the clinic as a whole. For example, if a doctor is noticing that people are consistently blogging about the long wait between blood draws and result calls, shift the system so that expectations are set concretely (for example, “we will only call after two o’clock and will call before five o’clock”) and move bad news phone calls to earlier in the day before the good news or maintenance calls go out (hint: no one complains when they get a call however late with a positive beta).

What responsibilities do patients have to doctors with this powerful medium in place? How can doctors best address blogging and lifestream writing with patients? And what other ways do you think clinics and agencies can show patients respect and help defuse tension before it hits the Web by making tweaks to their clinic protocols and procedures?

I know some people have been confronted about blogging by your doctor.  Have others ever had expectations set by their RE or an adoption agency?  How did they do it?  If you were upset with your clinic, would you pause before you blogged or would you say fuck the clinic for ruining your day?

Somewhat cross-posted with BlogHer


1 Nancy { 12.06.09 at 10:04 pm }

While I am very opinionated, I would never give out the name of my doctor or clinic. That way I can complain to my heart’s content and not ruin anyone’s opinion of the doctor. For I figure any problem I have with a doctor is ~my~ problem. Not something other patients would have. If I found something serious, even dangerous, (like an incident I had with my dentist), I took the matter up with the board governing the denist, not the internet. I may have blogged about the issue itself, but never anything personal.

I think a reason many people DO blog about their experiences is because they have no other resource. Doctor’s rarely give a way to address these issues, leaving their patients out in the cold when something does happen. You brought up a very interesting question in this dicussion – ” And what other ways do you think clinics and agencies can show patients respect and help defuse tension before it hits the Web by making tweaks to their clinic protocols and procedures?” Giving a patient a way/resource, like an email address, would really help I think. Someway for a patient to address issues without having to make an appointment to do so.

2 a { 12.06.09 at 10:25 pm }

My fertility doctor (I don’t know if he’s an RE) actually has a blog, spends a lot of time on message boards, and answers email promptly. I don’t know if he responds to customer service complaints, but he’s a pretty empathetic guy. Now I’m going to have to go and Google him, to see if anyone has bad things to say. The whole clinic is actually really easy to reach via email. Phone is not bad, but more difficult. Customer service issues that I’ve brought up have been promptly addressed.

I did check one of those doctor review sites, and found a negative review of my OB. I love that guy. I can’t believe that anyone can’t get along with him. All of my in-laws go to him too, and they all love him. Having had this experience, I can now be sure that I will take online information with a grain of salt.

3 Kim { 12.06.09 at 10:35 pm }

I agree that I would never outright post the name of my RE, but at the same time, if asked by someone in my area, I would wholeheartedly share my experience, good AND bad. (Like the fact that I feel completely ignored as a Clomid patient vs injectable patient last cycle…)

I do agree that there needs to be some sort of feedback system and not just with RE clinics. To be on the defense of the clinic, I can understand that with a large amount of calls to make, it can take some time, and *someone* needs to be at the end of the day. I can also empathize, as I can’t imagine how difficult it is to make negative beta calls. I work with HCV patients, and I *dread* the relapse calls. It’s heartbreaking for the person making the call, too, even if you’re not that attached to the patient. It doesn’t mean we should have to wait for these calls, but it shouldn’t go unnoticed that there is some compassion involved, whether we experience it or not.

But what has happened with addressing your issues directly with the doctor? I’ve not been too pleased with how a few things have gone with this cycle, and I will most certainly be telling the doctor the next time we meet. The clinic can’t improve or address a problem if they aren’t aware of it. And, if we’re not bringing it to someone’s attention, then we really don’t have a right to continue to complain. Patient-clinic interactions are a two way street.

4 Kristin { 12.06.09 at 11:20 pm }

Luckily for me, my past experiences with my OB’s office has been positive even when the news wasn’t good. However, if I was at an office that had continually bad service and didn’t address it in a satisfactory manner, I would go public with the clinics name and info. I wouldn’t do it in the heat of the moment though.

5 Carlynn { 12.07.09 at 6:32 am }

Very good post, I liked your suggestions. My REs have never broached the subject of blogging, and I have tried to respect their privacy. I think if I was really unhappy I would broach it with the clinic rather than talk about it openly on my blog as I think experiences are personal and my bad experience is not necessarily going to happen to someone else. In general, I have found the blogs excellent for overall advice on handling cycles but I haven’t ever taken specific “this doctor/clinic is excellent” advice.

6 Half of a Duo, Raising a Duo { 12.07.09 at 6:56 am }

Wow this is one of those subjects like Religion, politics and sex… really touchy.

I was really really mindful during the journey of becoming a parent via Traditional Surrogacy. Not only because of privacy for our surro, but because of the fact that, well… the journey was tough, long and I didn’t want to put it all out there.

Now I wish I had. As for the clinic… well, had I written about the stuff handed to us clinically and the thousands upon thousands of dollars WE DID end up spending out of pocket… our journey literally cost the same as a GS journey. I have no regrets and neither does the DH, as we have the Duo in our arms and it was God’s Plan…

But… mistakes were costly. Cycling was BRUTAL. And out of our control, completely. We were depending on the clinic, their mistakes and bad judgement calls, and our surrogate, and her bad judgement calls with regard to conception and beyond.

What do you do? Suck it in and take the high road, of course.

I think taking the high road (as the old grey mama here… with the wisdom) is always a good thing.

Clinics can’t hide numbers and must report to the ART so though mistakes happen, and you grind your teeth in frustration, it’s on THEM to fix it. That is why, they usually give you a “guarantee” with cycling now (3x for the price of one!)… ugh.

ART has become a massive business and it is so sad it has evolved from altruistic purposed to ka-ching.

You just gave me a lot to think about. This week’s blog entry and show and tell will be written by me and jenn (my traditonal surrogate friend who just gave birth to her final child, as she became infertile as a result of his birth). It will be about going from Hero to zero… as a mom… doing it all… and the kids move towards independence. Now that’s a touchy subject too!

If you are cycling for another, Mel I wish you so much luck and love. Everyone else on here cycling, too.

7 calliope { 12.07.09 at 7:47 am }

I have only ever posted the name of a clinic in order to help someone NOT go there. Otherwise I use code names or geographic nicknames. I know that what I write about any particular experience is only getting my perspective so it just doesn’t seem fair to use real names of anyone involved with a clinic on my blog. I can imagine how freaked out I would be if I stumbled across an RE’s blog and he or she used my name.

8 Road Blocks and Roller Coasters { 12.07.09 at 1:32 pm }

I always pause before writing negative things. We live in a litigious world and there is a line between opinion and slander…a line that can become blurry when you’re enraged.

9 Mrs. Hope { 12.07.09 at 4:08 pm }

Well, this hits close to home for me. My clinic did not, and to my knowledge, does not have a policy on blogging. I was very careful to never mention my doctor, the clinic, any of the other physicians, or any staff by name. I did a newspaper interview that “outed” my blog – yet you could not decipher who my doctor was. Turns out nurses and staff began reading the blog at that point (which I knew could happen). I did a “thank you” post that is buried deep in the archives where I do mention names. They continued reading after I was no longer going there, and were still reading when I showed up 18 months later to begin doing FETs. No one mentioned they were reading. No one suggested that I stop blogging.

I’ve also always been careful about my wording. I try to edit and re-read things that could be perceived in a negative light. However, I also reserve the right to portray a situation the way I felt it happened.

Until I got a phone call from my doctor indicating that nurses and patients found my blog to be negative about my doctor. He read it. He did not think what I’d written was offensive, and he encouraged me to continue blogging in the same space. I am blogging, but in a different space that isn’t “googleable”. I’m using a pseudonym.

Perhaps I should have been more careful. Perhaps I should have stopped blogging in the original space sooner. Honestly, I didn’t think anyone at the clinic would stay as interested as they apparently did. I’m a little paranoid now, and the clinic “feels” a little weird to me. Not because of my doctor – but because of the nurses and staff reading for so long without ever mentioning anything. I didn’t just write about medical procedures; I bared my soul, my struggles, and my heartaches. For me, the medical part – the part that got me in trouble – wasn’t the important part.

What’s done is done. I learned some lessons in internet “privacy”. I hope some staff learned some lessons along the way about what infertility patients are really thinking and feeling.

I do not post anything about infertility on FB. And I have occasionally on Twitter, but I will never post anything about my clinic there or in a “live-blogging” way. And my blog will have “clinic-scented” stuff – like I had a check today – but nothing written with emotions. Because you never know exactly who is reading if your blog is public.

10 Jendeis { 12.07.09 at 5:15 pm }

I don’t refer to my doctor or my clinic by their names, but I don’t really disguise what clinic I’m using. Also, I’d tell anyone who asked.

I just react viscerally to the idea of my doctor or my clinic or an adoption agency putting more restrictions on me. They’ve invaded so much of my life already – now this too you take away from me?

11 Baby Smiling In Back Seat { 12.08.09 at 5:44 am }

If a doctor told me not to blog from the get-go, I’d be very suspicious that there was something they wanted to hide from the world.

I’ve always been confused about bloggers who made comments like, “If my RE is reading this, please don’t tell me.” Why would an RE care about a patient’s blog? I always felt like my docs barely cared enough to talk to me when I was in front of them, much less read about me in their spare time. But I guess some doctors do google themselves.

Oh, and about the phone calls: my first RE was always within a 1-hour window with calls, except for the day of my first miscarriage. The nurse called and said that the results weren’t in yet, and she’d have to call back later. For my second miscarriage at a different clinic, the tipoff was that the RE called me himself. As soon as I heard his voice, I knew it couldn’t be anything good.

12 IF Crossroads { 12.08.09 at 8:43 pm }

This is a very interesting post Mel. I’ve often thought about my complaints on my blog regarding my clinic and their staff. While I’ve always used abbreviations for the clinic name and have used initials for the staff, I can understand why it would be a two-way street.
I try hard to not use my blog as a weapon. Especially now that I have a pretty decent viewership/readership. I think my thought process on this was different when I didn’t have any followers or commenters. I looked at my blog as my online journal, which I was doing a disservice by not posting all of the pertinent details of the cycle (the good, bad and ugly.)
I suppose that now, since I have hundreds of people that visit daily, I have a different responsibility to the blogosphere to be more selective on what I write.
With that being said, I will continue to write as honestly and openly as I can about my experiences. I think that this helps people become educated on the process and understand what can (and does) go wrong in ART and fertility clinics.

13 Kate (Bee In The Bonnet) { 12.09.09 at 11:39 am }

While I blog often about my doctors, I attempt to keep details discreet and non-searchable. But I certainly spout off whenever necessary, and I don’t hold back, and I don’t necessarily offer the kind of respect that I should, especially if I feel I’ve been disrespected by doctors.

Here is something of interest to me as regards this topic:
My mother is the chief of staff of the board of medical examiners in my home state. And as she reports, nice doctors don’t get sued. Period. It’s not necessarily because they are better doctors. Some of the most respected (by their peers in terms of their skill) surgeons are the most sued. And on the surface, that seems kind of unfair. These doctors are incredibly educated, and incredibly practiced in their fields. They run circles around their peers as it comes to their ability to fix a particular diagnosis.

BUT. But if you find your doctor to be abrasive or to have horrible bedside manner, chances are you won’t be as forthcoming about your situation. You won’t feel as though you are in a safe environment, and because of that, the doctor is going to miss out on key things that could change the way you are treated. I don’t care if I’m telling you 10 irrelevant things, and you’re in a hurry and you don’t want to hear it and you are SO SMART and SO WELL RESPECTED (by your peers) that you had me diagnosed the second I walked into your office. There is a strong chance that one of those ten things I just told you will be pertinent to my treatment, even if it is just that I need to feel informed before I consent to treatment.

Arrogant doctors get sued, and in my opinion, with good reason. Peoples is peoples (to quote the Muppets), and if your doctor isn’t treating you like a ‘peoples’, then you aren’t going to get the care you deserve.

And so, yes. I want to read about that thin-skinned patient and their feelings about their treatment. Because while there are instances where people have off days, chances are that doctor will treat you the same way. And while doctors need this information directly, in my experience, arrogance isn’t a quality that lends itself to respectfully considering a patient’s feelings, and most likely only further confirms to the doctors and their staff that patients are just a bunch of whiners who can’t handle the truth (and at their core, doctors who don’t listen to patients, who treat them poorly, are ALL arrogant. Actually, knowing the doctors I know, as friends, or as care providers or as co-workers of my mother, they ALL have a streak of God-complex running through them- it’s almost necessary for this field, to want to go into a profession in order to heal people, you have to have a little of this ‘I want to hold people’s lives in my hands’ attitude. Like how you have to have at least a streak of authoritarian issues in order to want to be a cop– you need to be the one in charge, you need to be the ultimate boss, etc., thus why the line between cop and criminal is so easily blurred at times. But I digress. )

Anyhow, if you are entering into a relationship with a doctor that you intend to be a long-term relationship, you may consider calling your local medical board and finding out how many times that doctor has been sued, because it will be a good indicator of what their bedside manner is like.

(Oh, and anaesthesia is the field in which you find the highest percentage of drug abuse among doctors. Never let an anaesthesiologist with shaky hands give you any sort of treatment- it’s a strong possibility that if they seem high, they are.)

Sorry I got a little off topic there. All of that is my way of saying that yes, patients have the responsibility to be active in their care and thus respectful of their doctors. But that generally, doctors who receive these reviews, even the vitriolic ones, are doctors who probably treat most of their patients in a way that is a cause for concern. Clinics and practitioners who are respectful of patients probably won’t have much to do in order to prevent their instances of ill treatment from hitting the web, because there generally won’t have been any ill-treatement worthy of remarking upon if these doctors are respectful in the first place. You simply cannot get high quality care from a doctor who leaves you angry. If you are angry, you are defensive and you are not fully able to share all pertinent information with your doctor, and thus, you are not able to get the care you need. Good doctors should never leave you angry enough to rant on a blog, ever. And so thus, I hope people don’t cool down before posting their experiences. I want to know so that I can ensure I choose a better doctor to treat me.

Essay over!

14 Bea { 12.16.09 at 7:59 am }

I’m not sure the blogs, or real-time blogging has as big an impact as all that. Most people aren’t very involved in the blogosphere, if at all. Specific names are important mostly in specific locations, and most readers of a particular blog won’t be from that location. Google has a limited reach and memory, unless you want to scroll through an awful lot of results. Message boards have been part of the landscape for a while. A lot of the time people are sitting in front of their computers when the phone call comes in (or fails to come in) so the cooling-off period isn’t there anyway.

I guess I don’t see sites like Posterous adding much to what’s been going on through pre-existing channels (including word of mouth and heated phone calls about your doctor to your gossipy friend – which are quite important because they are *local* channels).

That said. You are right about practising good communication including setting out the complaints – let’s say “concerns/queries” – procedure from the outset, also about responding appropriately to negative feedback. And I think patients ought to think twice before naming and shaming their doctor/clinic in the heat of the moment – just as they should think twice about heated comments in general, but especially because this practice has wider effects on the general atmosphere of doctor-patient relationships. Which is not to say they shouldn’t say anything negative about their doctor in public, but to be fair to all parties, unpleasant observations deserve reflection.


15 Bec { 12.26.09 at 3:23 am }

I have put specific details about my doctors and clinic on my website, simply because living in Western Australia, there are only so many clinics and doctors – effectively everyone knows everyone, and to hell with it – I want to tell my story the way I see it. That includes using someones real name or a particular clinics practices. As far as I’m concerned, if they don’t have anything to hide, then they wont care. I’m certainly not going out of my way to censor myself.

16 Battynurse { 12.29.09 at 12:12 am }

Of the 2 RE’s I’ve seen neither of them said anything about having a policy about blogging. The first I don’t think he knew I blogged and the second I’m sure he did know as I found him through Bleu but I don’t know if he has ever read my blog or anyone in his office. In most all cases if I had a problem with my doctor I would try to first address it with the clinic. With the first RE where I got no support and no questions answered etc I did state on my blog that I would never go there again but I didn’t use names. Granted if someone knew where I was at the time I cycled and there is only one doctor in the area it wouldn’t be hard to figure out. However I still stand by my opinion that the first doctor could have not lost a patient by simply taking the time to answer my questions and ordering some blood tests a bit earlier and maybe doing a scan. Would it have changed the outcome? Likely not but it would have went a long ways towards making me feel heard and cared for which was my biggest complaint. I love my current doc as I always feel like he listens to me and is available to me and when I saw another blogger talking about how unhappy she was (no name was used but I knew cause we had talked about it before) with the treatment at his office it sort of made me feel bad for him and his office because this is so different from the treatment I’ve received from him. I have in other situations gladly and very openly complained to a clinic though for a regular doctor who treated me very badly based simply on my size and yes I was still angry enough that I did consider putting his name on my blog. I didn’t because I don’t think I’d like to have my name googleable like that but it still really bothered me that he never apologized for how he treated me and then I still had the pay for the appointment because they coded it wrong and wouldn’t change it for my insurance to cover it.

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