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.
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.
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.