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Thursday
May032012

The Ethics of Facebooking a Birth

I was directed to a CPM’s Midwifery Facebook Page where she was sharing an enormous amount of information about clients… that one was miscarrying, then she found the baby’s heartbeat… that one woman was having a long labor, how far she was dilated and then when she delivered, including the sex and weight of the baby. I discreetly (believe it or not) mentioned that she might not want to share that information without a Media Release and I offered the Release I use with my clients. 

A tiny bit of my own back story. I revealed some unflattering information in this blog about a client that I thought I’d hidden enough details about several years ago. She recognized herself and I hurt her and her family very much. I apologized profusely and still feel horrible about hurting her. After that, I created a Release and use it with clients. I was given verbal permission with some of the women you see and read about here in my blog and that is written in their charts. I know now that isn’t enough and have clients sign the Release instead. So, you see this is a major hot button issue for me. 

The midwife in question on Facebook first told me she didn’t say anything other midwives shared and I encouraged her to lead, not follow… and that they were also wrong. I then got this (verbatim): 

“Hmm. Maybe someone needs to clarify for us poor ignorant midwives what is and isn't acceptable to post. Because we are under the impression that as long as we are not posting identifying information, such as they're names, addresses, phone numbers, social security numbers that it is ok to tell some information. Like mentioning that someone with insulin resistant PCOS actually got pregnant and carried to full term without complications. No one has any clue who I am talking about other than my apprentice. This also serves as encouragement to other women with the condition that they do can do it." 

For the record, I did not call her ignorant, nor even imply it. 

When this topic comes up, as it does from time to time, always when a midwife or doula shares information about a client on Facebook or in her blog, the subject of a HIPAA violation invariably follows. So, here I discuss what my understanding of what HIPAA says and how it relates to midwives and their Internet disclosures of clients’ pregnancies, labors, births and postpartum periods. 

HIPAA stands for the Health Insurance Portability and Accountability Act (HIPAA) and it: 

“It establishes appropriate safeguards that health care providers and others must achieve to protect the privacy of health information.” 

“It holds violators accountable, with civil and criminal penalties that can be imposed if they violate patients’ privacy rights.” 

It empowers individuals to control certain uses and disclosures of their health information.” 

Below, I discuss the relevant definitions for care providers, including midwives. Doulas, not being Healthcare Providers, are exempt; more on this later. I know this can be boring as crap, but bear with me. This is important for all of us to know and understand as the Internet consumes more and more of our lives. Note that the emphasis is mine. 

There is one definition that causes pause and that’s for what a Healthcare Provider is: 

“Every health care provider, regardless of size, who electronically transmits health information in connection with certain transactions, is a covered entity. These transactions include claims, benefit eligibility inquiries, referral authorization requests, or other transactions for which HHS has established standards under the HIPAA Transactions Rule. Using electronic technology, such as email, does not mean a health care provider is a covered entity; the transmission must be in connection with a standard transaction. The Privacy Rule covers a health care provider whether it electronically transmits these transactions directly or uses a billing service or other third party to do so on its behalf. Health care providers include all “providers of services” (e.g., institutional providers such as hospitals) and “providers of medical or health services” (e.g., non-institutional providers such as physicians, dentists and other practitioners) as defined by Medicare, and any other person or organization that furnishes, bills, or is paid for health care.” 

I’ve read this as Internet discussions of clients do not qualify as HIPAA non-compliance. I wish I could find something that specifically addresses Internet conversations, but haven’t found that yet. 

However, I am not a HIPAA expert so perhaps we should assume HIPAA rules our transmissions and use them as our ethical responsibility. 

That’s a huge ASSUME, though, isn’t it. 

Let me continue for a second, with the assumption that we are, indeed, covered by HIPAA regulations. 

Protected Health Information. The Privacy Rule protects all ‘individually identifiable health information’ held or transmitted by a covered entity or its business associate, in any form or media, whether electronic, paper, or oral. The Privacy Rule calls this information ‘protected health information (PHI).’ 

“’Individually identifiable health information’ is information, including demographic data, that relates to: 

the individual’s past, present or future physical or mental health or condition,

the provision of health care to the individual, or

•the past, present, or future payment for the provision of health care to the individual,

and that identifies the individual or for which there is a reasonable basis to believe it can be used to identify the individual.  Individually identifiable health information includes (my addition: but NOT limited to) many common identifiers (e.g., name, address, birth date, Social Security Number). 

I say “NOT limited to” because the midwifery community, especially the homebirth community, is so small that almost any information given out will be easily known by others, doulas and midwives. Probably even other mothers. 

“De-Identified Health Information. There are no restrictions on the use or disclosure of de-identified health information. De-identified health information neither identifies nor provides a reasonable basis to identify an individual. There are two ways to de-identify information; either: (1) a formal determination by a qualified statistician; or (2) the removal of specified identifiers of the individual and of the individual’s relatives, household members, and employers is required, and is adequate only if the covered entity has no actual knowledge that the remaining information could be used to identify the individual.” 

The homebirth midwifery community is too small to be able to share even the most basic information about clients online. If the mom has shared even one part of her unique story with someone else, that someone else can identify the woman in question. 

Example: 

Pregnant woman’s membranes ruptured with no contractions and was given Pitocin at 20 hours post-rupture.

Even that small amount of information might identify more than one woman, but in a homebirth community, it’s unlikely to lead to more than one person. And, the person that matters the most about who recognizes the woman is the woman herself. If she reads the midwife’s Facebook Page or blog, she will, undoubtedly, recognize herself. How fair is that? 

For those that have followed births on my Facebook Page who are now wondering if I broke these rules myself, the answer is not at all. Some women love the updates of their labors and births, being able to see the timeline when they have a minute to read postpartum. Even following my daughter’s labor and birth on Facebook was done with permission. Blessedly, my kids are comfortable with their mother’s outgoing writing. 

So what if HIPAA doesn’t cover the privacy of clients on the Internet, should there be an ethical responsibility to them? Absolutely. And this is where the doulas come in, too. I believe there should be peer pressure to keep our clients’ private lives private. If we can’t have legal rules about the issue, there should at least be moral rules. I hope others will join me in helping to protect women’s pregnancies, labors, births and postpartum times. I really hope midwives and doulas can get permission to tell the great birth stories! I love watching birth unfold as much as the next gal. Below is my Media Release for anyone to use if you want. Try and get both parents to sign. I believe more communication with clients is always a good thing.

Media Release 

I hereby give my permission for Barbara E. Herrera, LM, CPM to:

(please circle acceptable choices) 

______ Take photos of my pregnancy, birth and postpartum period. 

______ Photos may/may not show nudity – breasts – the actual birth with vulva pictures. 

______ May/May not use my name when using my photos or speaking/writing about my pregnancy, birth, postpartum, breastfeeding or family experience. (She has explained she typically does not use names.) 

______ May/May not use the photos on the following social networking sites: www.NavelgazingMidwife.com (Midwifery website), www.NavelgazingMidwife.squarespace.com (Blog), Facebook, www.YouTube.com, etc. If new technology is created, she will ask specific requests regarding using the photos there. 

______ May/May not submit photos of me, my baby or my family to magazines and media. No photo of the baby will include genitals (inclusive of entire Media Release). I will receive no compensation if the photos are published, but Barb will give our family a copy of the periodical in which the photo appears. Magazines might be hard copy or on the Internet. 

______ May/May not use photos of me, my birth, my baby or my family during conference presentations, midwifery texts and books. 

______ If any opportunity to use the photos arise that are not covered here, Barb will ask specific permission and add it to this Release. 

______ To speak about/Not speak about my pregnancy, labor, birth, postpartum, breastfeeding, parenting on any social networking site, periodical, public speaking engagements, book or midwifery text. If future technology is created, she agrees to ask additional permission to include it. She agrees to use professional discretion and we understand her primary reason for sharing is educational and not voyeuristic. She agrees, if I ask, to disclose where she has discussed me, my pregnancy, labor, birth, postpartum, breastfeeding, parenting and marital situations. 

______ To write about/Not write about my pregnancy, labor, birth, postpartum, breastfeeding, parenting on any social networking site, periodical, public speaking engagements, book or midwifery text. If future technology is created, she agrees to ask additional permission to include it. She agrees to use professional discretion and we understand her primary reason for sharing is educational and not voyeuristic. She agrees, if I ask, to disclose where she has discussed me, my pregnancy, labor, birth, postpartum, breastfeeding, parenting and marital situations. 

While I may make changes in the future to this Media Release, the changes will not be retroactive, but will be from the date of changes forward. 

Barb will keep a copy of this Release in my midwifery chart or, if I am not a midwifery client, in a separate chart specifically for Releases. She will scan the Release and email me the copy. 

I have considered these options and have discussed them with my partner/another important person in my life and understand the importance of full informed consent – and give it here.

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Reader Comments (17)

I would like a homebirth if I have another child. With this post in mind, even HIPAA compliant information sharing will be discussed. If the midwives want to share information I would want it to be in a non-public forum where they own the information, not Facebook, Twitter, or any other social media site. Perhaps I'll have to come up with my own contract for them to sign. If I ever found out personal (even de-identified) information about me was shared I would want to be able to take legal action.

May 3, 2012 | Unregistered CommenterMeghan

"Every health care provider, regardless of size, who electronically transmits health information in connection with certain transactions, is a covered entity. These transactions include claims, benefit eligibility inquiries, referral authorization requests, or other transactions for which HHS has established standards under the HIPAA Transactions Rule."

I am no HIPAA expert, nor am I an attorney. However, my reading of the above is that any health care provider who electronically transmits information related to patient healthcare is bound by the provisions of HIPAA. I don't think that the above defines the INFORMATION that is private, but rather, dictates who a covered provider is.

Lady at the Whole Foods who recommends a beneficial lactation tea? Not subject to HIPAA. Me talking about my sister's labor? Not subject to HIPAA, as I do not electronically transmit anything related to health care Random person who puts crystals on you for cash? Not subject to HIPAA.

A midwife who faxes lab orders? A nurse who electronically submits insurance claims? Bound by HIPAA. I don't know, but I would guess that the law was written this way to intentionally include all traditional and easily available HCP, and to exclude medical information shared by non-medical people.

Which is to say, I think that the midwife of whom you're speaking is taking a huge risk. Unless she never faxes lab orders; bills insurance companies; etc., she's probably subject to HIPAA. As such, without a release, she's sharing private medical information about women who are going to be able to identify themselves. Certainly, many clients may not mind--which begs the question: why not just get a release?

May 3, 2012 | Unregistered CommenterKate

Very, very good points! This is definitely an issue nowadays since most midwives and doulas actively post about their professions on Facebook. My midwife (Stephanie S.) has a great social media release form, similar to yours, and I think that that is an awesome idea for ALL birth professionals - it really leaves no options for misunderstandings or hurt feelings. Good stuff. Thank you for posting this!

May 3, 2012 | Unregistered CommenterDiana

For me, this is another example of someone placing homebirth advocacy over the needs (or even rights) of the client. What is more important, respecting the privacy of the clients you have or advocating for more?

May 4, 2012 | Unregistered CommenterShandra

Excellent post.

I think what may be more pertinent than whether blog and facebook posts are covered is the issue of whether an individual midwife or doula is a covered entity under HIPAA.

A provider is only a covered entity if:

"they transmit any information in an electronic form in connection with a transaction for which HHS has adopted a standard."

The covered transactions are related to communications with health plans.

So if a midwife, doula, or birth center does not, for example, bill health plans electronically, or submit in electronic form health information to a health plan for the purpose of obtaining reimbursement, or authorization for treatment or referral, HIPAA doesn't apply.

May 4, 2012 | Unregistered CommenterSquillo

I'm not a lawyer, but I think Kate is correct. You are a "covered entity" under HIPAA if you electronically transmit health information - whether for billing, coding, faxing lab results, etc. Basically the only health professionals not covered by HIPAA are old country doctors who keep paper charts and make their patients submit their own claims, some midwives, and alternative practitioners who run a cash-only business.

Once you're a covered entity under HIPAA, you're subject to its regulations. You're forbidden from sharing ANY personally-identifiable protected health information without the patient's express written consent - not just electronically, but in person, in magazines, over the phone, in writing, you get the idea. It may actually be a violation of HIPAA for your release form to make the consent irrevocable or non-retroactive (not sure about that one). Also, to my knowledge, covered entities are REQUIRED to give their patients a statement of how their protected health information will be used. Fines for violations are steep.

May 4, 2012 | Unregistered CommenterElle Bee

Meghan: I think it's a GREAT idea for clients to have a Release in their charts, too! I think I'll make a post out of that. Awesome idea.

May 4, 2012 | Registered CommenterNavelgazing Midwife

Kate: I think the paragraph probably says that, too, but what of the midwives who don't do anything electronically? Are they immune? I'd like to see the HIPAA rules expanded and the Internet being included in the "electronic transactions."

Zack and I were talking about this yesterday and he said, "Would a midwife be allowed to go up to a stranger at Wal-Mart and talk about a woman's birth? That's what it's like talking on Facebook." I thought that would be a good way to think of the ethics of it, yes?

Diana: LOVE your midwife. :) She and I have been on the Net together for about 15 years, so have absolutely watched the birth of Net chatting about births, HIPAA and the smudgy lines all of it entails. I'm glad she has a release, too.

May 4, 2012 | Registered CommenterNavelgazing Midwife

Would the patient in your scenario of gossiping about birth at Wal-Mart have a cause of action for invasion of privacy? Possibly, under state law, depending upon the state (I know of a couple of states where the answer is definitely). But probably not under HIPAA, unless the midwife is somehow a covered entity. This has to do with the constitutional authority of Congress to make laws.

Of course, state medical boards and the like police confidentiality for doctors, nurses, etc. I'm not sure if midwifery is currently organized or regimented enough to enforce these kinds of requirements on midwives. That's nothing against midwifery, but it is a lot less regulated than some professions and there's no real incentive to submit oneself to authority (and hey, in some state HB midwifery is even illegal, so...).

May 4, 2012 | Unregistered CommenterElle Bee

I think that the midwives who don't do anything electronically are most likely immune from HIPAA. I think also think that posting something about one's patients that they are very likely to be able to find and identify as themselves is unethical.

May 4, 2012 | Unregistered CommenterKate

...but what of the midwives who don't do anything electronically? Are they immune?

Yes. Remember that HIPAA was implemented primarily as a response to concerns about health plans using patient data improperly (specifically, to prevent health plans from using the data to deny coverage when you change health plans) ; it was not about protecting consumers from individual providers breaching privacy. It was never intended to keep your doctor or midwife from talking about you in the hallway (or on Facebook.)

What is supposed to prevent individual providers from breaching confidences is professional ethics. I believe JCAHO requires hospitals to have patient confidentiality policies in place for accreditation, for example. Medical centers have also been sued for breaking confidentiality. However, if one doesn't work for a covered entity, and if one has no malpractice insurance (making one a cash-poor target), the only thing preventing one from violating confidentiality is one's own ethics.

May 4, 2012 | Unregistered CommenterSquillo

I often wonder even about the conversations where the midwife tells me about another situation such as, "I have another woman who has had many children and she says she likes having larger babies, she usually has 9 pounders..." That kind of comment makes me wonder if she's sharing about me, and is it in a positive way? I don't know who she was talking about, but if I happened to have a friend who was seeing her, I might put two and two together. I've had a sonogram tech actually tell me they had just seen a women with a certain type of pregnancy that day, and I guessed the name of the person and they told me, "yes, that's right." Then we talked about the family and even past pregnancies. I was not worried when she shared about me to this friend, but what if we weren't friends and I didn't already know she was pregnant? It just so happened we had both been in to see this tech on the same day in two different pregnancies, and we both liked the tech and all, but that could have been really bad.

May 4, 2012 | Unregistered CommenterDawn

HIPAA is a tricky animal. As a volunteer in two different hospitals I am bound to HIPAA guidelines, although I'm not sure if I've ever transmitted any medical records electronically. Both hospitals were very strong in their HIPAA training. It would be considered a HIPAA violation to have a friendly, medical-related conversation with a neighbor whom I happened to see at the hospital while working as a volunteer. Yikes!
Another brush with HIPAA came when I complained that my former doctor mentioned to a friend of mine during her office visit that my birth was, "The only birth I've ever missed." She told her husband who then related that fact to me when I saw him at church. It made me feel VERY uncomfortable. When I complained to my insurance about the conversation and it being a possible HIPAA violation, they said that because my friend initiated the conversation by bringing my name up, the doctor's response would not be considered a HIPAA violation. Someone from the Attorney General's office confirmed this same rule; "social conversations" or something like that. Still, it made me feel exposed and vulnerable. My doctor could have said many other things that were non-medically related that would have satisfactorily answered her question. Oh well. MUCH CAUTION should be exercised rather than less in any conversations regarding sensitive issues like childbirth. Too much is at stake.

May 5, 2012 | Unregistered CommenterLaura

HIPAA or no, healthcare providers should not be discussing their clients/patients with others without a very good reason. Our relationship with our patients relies on trust--and how can there really be trust if the patient is worried she'll end up as a topic on Facebook or Twitter? Better safe than sorry--so err on the side of not sharing others' personal information!

May 5, 2012 | Unregistered CommenterD

Whether or not it's a HIPAA violation, I stopped announcing births on FB about a year or more ago...it's still a violation of privacy. If a mama updates about her birth, she can tag me in her post if she chooses to.

May 6, 2012 | Unregistered CommenterColleen

As always an interesting post Navelgazing Midwife.

I've been thinking about these issues quite a lot recently, as I'm new to the blogging world. I'm guessing there are also American/Canadian guidelines on confidentiality/upholding reputation of midwives? I assume if these guidelines are followed, the HIPAA would be followed as a matter of course. This is sort of how it works in the UK and New Zealand.

I wrote about why i post about midwifery, and how essentially, I change so many details that women/families would never be able to identity themselves here.

And why I think that what I write is still valid and useful even though in my posts I change the details so much.

May 9, 2012 | Unregistered CommenterEllie

Thank you for this! I have created a separate form just for media release.

May 23, 2012 | Unregistered CommenterLakeisha

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