24h-payday

‘Tis the (Conference) Season: Come share, connect, and learn along with me

I have felt a little bit like a slacker blogger lately, but it’s not for lack of thinking and writing about birth. I just wrapped up an article called Social Media, Power, and the Future of VBAC with Hilary Gerber from Mom’s Tinfoil Hat and Desirre Andrews from Preparing for Birth which we submitted to the 50th anniversary “Looking Back – Looking Forward” special issue of Lamaze’s Journal of Perinatal Education. I’ve also been working with Kristen Oganowski from Birthing Beautiful Ideas to coordinate the development of an NIH VBAC Statement Primer for consumers. We have a bunch of brilliant contributors on board and will be launching the primer later this month at Lamaze’s new (very cool!) social networking site for women, Giving Birth with Confidence.

Now the big looming work comes in the form of conference season. And I want you (yes YOU) to help me. I have a love-hate relationship with conferences. Mostly love. I love how much sharing, connecting, and learning happens. I love finding out what old friends and colleagues are up to and meeting the people doing the most interesting, innovative, and important work in the field. But attending (and especially speaking at) a conference is a lot of work, and often disrupts progress in my other (equally if not more important) work. Also, I hate that conferences take me away from my family.

So…I want to make the most of the opportunities these conferences offer. I want to maximize the amount of sharing, connecting, and learning we – collectively – do. And I want to leave these conferences not with tons of new projects and commitments for myself, but with tons of new opportunities for the broader maternity care community (that means YOU) to drive meaningful improvements for women, infants, and families.

Here’s some more about the conferences I’m attending, and how YOU can be part of them.

On June 7 I’ll be at Health 2.0 Goes to Washington.

Health2ConDC

Um, have I mentioned lately that I think social media is going to transform maternity care? Well I developed this delirious optimism by hanging around (online) with the Participatory Medicine crowd.  I get to actually meet most of them next week!

I first caught on to the Participatory Medicine train when I read a Grand Rounds blog carnival on the theme of “Meaningful Use” almost exactly a year ago. “Meaningful Use” is government speak for the goal of implementing electronic health records (with piles and piles of stimulus money) in a manner that actually improves care. The Participatory Medicine folks are front and center in the conversation, pushing for patient-access to be the defining characteristic of meaningful. It’s all about liberating the mounds of data that will exist in electronic health records and letting innovators, policy-makers, scientists, and – most importantly – patients themselves use that data to improve health.

I have 10 minutes to speak but a whole day to connect and learn.  Here are my questions for you to help me make the most of this opportunity:

  1. What do you think are the most innovative ways women are using the internet or social media to have healthier, safer, and more satisfying childbearing experiences?
  2. What are the types and sources of maternity care data that you would most like to see become available?
  3. What kind of data do you think should be documented in electronic health records during pregnancy, birth, and the postpartum and newborn period? Think outside the box.
  4. What do you think would be the most important benefits (and for that matter, risks or drawbacks) of having complete, unhindered, timely access to your maternity care records?
  5. What ongoing or forthcoming projects in the maternity care world could use the insights or funds of outside (non-birth-enthusiast) social innovators?

The following week (June 12-16), I’ll be at the American College of Nurse-Midwives Annual Meeting.

ACNM

I’m only attending ACNM for one day, but traveling with my family for my kids’ first-ever trip to the nation’s capitol.  I’m giving two educational sessions that couldn’t be more different from one another. First, I’m presenting a talk called, “How Not to Get Duped by Obstetric Research” about the importance of thinking critically about evidence, and how honing critical analysis skills can can help midwives practice and advocate for safe and effective care. The other talk is a panel discussion with Amie Newman from RH Reality Check and Mary Murry, CNM, from The Mayo Clinic “Pregnancy Week by Week Blog,” moderated by Melissa Garvey from ACNM’s own Midwife Connection Blog. We’ll be talking about why more midwives should be blogging and how they can get started.  We recorded a really lively discussion about these issues on The Feminist Breeder & Friends Radio Show on International Day of the Midwife – a preview of our ACNM panel – which you can listen to here:

My questions for YOU:

  1. What do you think is the optimal role of midwives (specifically certified nurse-midwives and certified-midwives) in blogging and other social media?
  2. How can we protect the privacy and dignity of the women and families we serve (and for that matter, the people we work with) when midwives share about our work in social media spaces?
  3. What obstetric routines or beliefs would you most like to hear me critically analyze?  I promise to make at least a blog post or two out of my How Not to Get Duped talk. (Actually, what I’ll also do is write parts of the talk from my prior blog posts, so if you have any favorite posts from the archives that you think would make good case studies, please suggest them!)
  4. What are the best DC outings to do with a 3 and an almost-6 year old? :)

Lastly but Oh-So-Not-Leastly, I’ll be attending the Normal Labour and Birth 5th International Research Conference in July.

Normal Birth

I’m not speaking at this conference. I’m going for the sole purpose of blogging it! I wrote a proposal to the conference organizers suggesting that they let me attend and help disseminate the proceedings. They agreed!  I think this is a huge opportunity to learn from the people doing the research about how to optimize the health and safety of healthy women and their babies around the time of birth. We’ll also hear from leaders who are creating and maintaining integrated, midwife-led primary maternity care systems, the gold standard for achieving “woman-centered, safe, effective, timely, efficient, and equitable” care.

What happened when bloggers and other connected consumers attended the NIH Consensus Development Conference on VBAC was astounding and continues to deliver. Since that experience, I’m addicted to putting scientific findings in the hands of engaged, connected consumers, because, as Kay Dickerson from the Cochrane Collaboration says, “We’ll only get evidence-based healthcare in this country through consumer activism.” Today activists have more access than ever before to information and are getting increasingly social media savvy. There’s no telling what we can do if we put our innovative, passionate minds to it and work collaboratively.

So here’s what I want to know from YOU:

  1. Whose research are you most interested in hearing about? (Look over the Normal Labour and Birth agenda to see who will be presenting about what.)
  2. Would you rather have a little bit of information/analysis about more of the presentations or more in-depth analysis of fewer presentations?
  3. Are there any researchers you would like me to conduct a “Consider the Source” Interview with?

Finally, any readers who are planning to attend any of these conferences – I invite you to submit a guest post. I’d love to share multiple perspectives (not to mention the tremendous work of blogging all of these meetings!) Just email me at amyromano [at] Lamaze [dot] org.

Uncategorized , , , , , , , , , , , , , ,

  1. June 1st, 2010 at 00:18 | #1

    I don’t know how you do it. I was so mentally wiped from the NIHVBAC conference that I never even wrote about it on my blog (I hosted three radio shows! but never actually wrote about my experience on TFB.com.) I’ll be forcing my self to write about BlogHer because I’m contractually obligated (by my sponsors) to do so.

    To answer two of your questions:
    1 What do you think are the most innovative ways women are using the internet or social media to have healthier, safer, and more satisfying childbearing experiences?

    By sharing information, and experiences, with full disclosure. Women will say things online that they wouldn’t say to their friends, which keeps a truly open dialogue running.

    What kind of data do you think should be documented in electronic health records during pregnancy, birth, and the postpartum and newborn period?

    Many women have to dig through paper copies of their medical records when they seek a VBAC. Women should have ready access to the following information: Type of cesarean closure (double/single), incision type (vertical/bikini cut), whether their c/s was billed as elective/what the reason was.

    That’s all I can think of now, but anything related should be included.

  2. June 1st, 2010 at 08:24 | #2

    Amy, you know what I think is one of the most important things we need nationwide regarding data? Transparency! We need NATIONAL databases just like New York and Massachusetts have. It is a must, and it would be a step forward.

    We need to work towards making VBAC Bans illegal. Hospitals cannot and should not be forcing women to have unnecessary surgery, especially if they do not consent.

  3. avatar
    Greta
    June 1st, 2010 at 09:41 | #3

    Q: What kind of data do you think should be documented in electronic health records during pregnancy, birth, and the postpartum and newborn period? Think outside the box.

    Incidence of PPD, breastfeeding data. That’s all I can think of right now.

    Q: What do you think would be the most important benefits (and for that matter, risks or drawbacks) of having complete, unhindered, timely access to your maternity care records?

    Hospitals might include LESS in the records if we have immediate and open access to them, but that aside, I think that it might help people figure out what happened in the event of complications. It seems this would be a good way to get information since doctors can sometimes be less than forthcoming.

    Q: What obstetric routines or beliefs would you most like to hear me critically analyze? I promise to make at least a blog post or two out of my How Not to Get Duped talk. (Actually, what I’ll also do is write parts of the talk from my prior blog posts, so if you have any favorite posts from the archives that you think would make good case studies, please suggest them!)

    Dear god, there are like a million, and I’m going to generalize. Talking about induction, c-section, etc before it gets to that point, meaning before 40-42 weeks. Being anti-birth plan. Intervention-based. Not learning how to perform techniques that midwives know how to do (turning babies, clearing cervical lips, and other manual pre-intervention techniques). Suggesting to women that they should have c-sections before it’s medically necessary. I would like to see them all study NORMAL births with midwives, not only come in contact with midwives during transfers. Would also like to see more of them pushing for VBAC and not pre-term second c-sections.

    Q: What are the best DC outings to do with a 3 and an almost-6 year old?
    Go to the Smithsonian Air and Space Museum! Vietnam Wall is pretty amazing.

    Q: Whose research are you most interested in hearing about? (Look over the Normal Labour and Birth agenda to see who will be presenting about what.)

    Professor Soo Downe

    Q: Would you rather have a little bit of information/analysis about more of the presentations or more in-depth analysis of fewer presentations?

    A little about a lot.

    Q: Are there any researchers you would like me to conduct a “Consider the Source” Interview with?

    What is this?

  4. avatar
    Greta
    June 1st, 2010 at 09:43 | #4

    Holly Kennedy, FACNM, CNM, PhD too!!

  5. June 1st, 2010 at 12:45 | #5

    Let me second what Gina said–I don’t know how you do it! (Though I must say, I’ll take a birth conference ANY day over an academic philosophy conference. :-))

    Here are some responses to a few of your questions:

    What do you think are the most innovative ways women are using the internet or social media to have healthier, safer, and more satisfying childbearing experiences?

    We are connecting with other birth professionals and other birthing women online in ways that some of literally *cannot* (b/c of cost, travel, etc.) in a person-to-person context. With the help of other women online, we can find birthing/breastfeeding resources, research, and even peer-to-peer support. From personal experience, my online research *and* my online VBAC support board (on Babycenter) made ALL the difference in my second son’s birth!

    What kind of data do you think should be documented in electronic health records during pregnancy, birth, and the postpartum and newborn period? Think outside the box.

    I’m not quite sure how this would work, but it would be great if women could somehow contribute their own perspective to their maternity-related medical records. Admittedly, I can’t specify yet exactly *what* this would contribute to a person’s records, but it seems to me that it wouldn’t be entirely unreasonable to *allow* a woman a 48-or-so-hour period after an appointment/hospital stay/etc. to contribute 150-250 words about her experience (maybe even according to a particular prompt or question/answer format). And yes, this idea is borne of Tricia Pil’s recent article documenting the diverging viewpoints (hospital, records, and her first-person account) on her third birth. I just wish that there would have been some way for her to document her viewpoint *in* her records immediately after the fact.

    What do you think is the optimal role of midwives (specifically certified nurse-midwives and certified-midwives) in blogging and other social media?

    Midwives obviously have a unique perspective on maternity-related research, on hospital birth, and just on birth in general. As a doula–and as a birthing woman myself–I find that it’s enormously helpful to see this perspective online, whether in a blog, on FB, or on Twitter. And there’s nothing like a community of compassionate and intelligent birth professionals to get the critical thinking gears working!

  6. avatar
    Carol Van Der Woude
    June 1st, 2010 at 15:45 | #6

    What kind of data do you think should be documented in electronic health records during pregnancy, birth, and the post partum and newborn period?

    I like Kristen’s suggestion of the woman’s perspective on her birth. This would help to identify post traumatic stress.
    For every labor induction a bishop score of cervical readiness should be documented.
    All medications given during pregnancy, labor and birth should be included. Because we are still learning about the impact of the birth control pill on a woman’s health, the history of its use should be included.

  7. June 1st, 2010 at 18:43 | #7

    I’m going to try to be at the normal labour conference in Vancouver (really I don’t have excuses, UBC is very close to my house!). I’ll be looking for more info on how to lower our rising cesarean rate and improve options for VBAC-seeking moms. I look forward to meet you there Amy :-)

  8. avatar
    Karen Ruby Brown
    June 1st, 2010 at 20:58 | #8

    Hey Amy, I’m in Nicaragua at the moment, and there is a group of pregnant/childbearing ex-pat women down here using the internet to supplement and inform their efforts to educate themselves and their providers, who are by and large extremely medical. It’s an interesting microcosm; there’s not as much choice here and they are trying to recondition the prevailing medical culture using evidence and information they obtain online.
    What kind of maternity would I like to see? One that provides the same, evidence-based care to women of all classes and cultures. I’ll post this on your FB as well, and will come up with responses to your other questions.

  9. June 1st, 2010 at 23:57 | #9

    Hi Amy,
    lots of questions! Health 2.0 answers —
    1. What do you think are the most innovative ways women are using the internet or social media to have healthier, safer, and more satisfying childbearing experiences?

    not sure there has been much research in this area — for women who have a critical perspective on typical obstetric practice, using the internet for finding information and supportive e-friends. for women who have less or no critical perspective — they are posting their ultrasounds online, on YouTube, making online diaries/blogs to share with far flung family/friends.

    2. What are the types and sources of maternity care data that you would most like to see become available?

    2a. a standard questionnaire to be completed by every woman who gives birth in the US (in whatever language she speaks)

    3. What kind of data do you think should be documented in electronic health records during pregnancy, birth, and the postpartum and newborn period? Think outside the box.

    3a. in addition to demographic and medical information about the mother and baby — data on any/all procedures, drugs, etc. used in labor/birth/pp and not just those for which there is a ‘billing code’; data on medical care providers (name, degree, where educated, years practiced, # years at facility, # and type of training/skills workshops attended, # of safety/quality workshops attended; as well as each provider (including nurses) rates of outcomes like csections, instrumental procedures, episiotomies, etc.)

    4. What do you think would be the most important benefits (and for that matter, risks or drawbacks) of having complete, unhindered, timely access to your maternity care records?

    4a. benefits – facilitates changing providers easily when desired; close by in event of disasters; empowering for women
    risks/drawbacks – could end up in wrong hands/loss of privacy – some womens’ reproductive histories are not fully known by even those in their families (like past abortions or STDs)

    5. What ongoing or forthcoming projects in the maternity care world could use the insights or funds of outside (non-birth-enthusiast) social innovators?
    of course The Birth Survey; how about an angel investor for Lamaze online birth education for every pregnant woman?

  10. June 2nd, 2010 at 08:19 | #10

    Thanks Christine for this very thoughtful comment! I know you’ve thought about these issues so I’m glad you chimed in. I agree that there should be a standard form completed by every woman who gives birth. New Zealand requires this of all women who use midwives (which accounts for about 75% of all childbearing women). Not only does every woman fill it out, but every midwife must review her feedback as well as stats for her practice (percentage of vaginal births, etc.) every 2 years during an audit, which is conducted by a fellow midwife and a consumer representative. I think the 10 questions are great – they all have to do with how much the woman was encouraged to be an active participant in her care. http://www.midwife.org.nz/index.cfm/1,86,533,0,html/Consumer-Feedback-Forms-for-Hospital-Midwives I would love to see this part of the electronic record – which isn’t yet the case in NZ as far as I know.

  11. June 2nd, 2010 at 08:22 | #11

    Very interesting, Karen. When I worked in Guatemala before and during midwifery school, it was clear that the U.S. “exports” our beliefs about birth, along with our medical/surgical management practices. But with scarce resources it seemed like hospitals incorporated all of the worst parts of the U.S. medical model and retained none of the aspects that preserve at least some dignity or quality/safety assurance. It’s interesting to think about the role the internet might play in exporting some of the advocacy, support, and information sharing that is now such a huge part of the U.S. childbearing experience. What are you doing in Nica, btw?

  12. June 2nd, 2010 at 08:24 | #12

    @Elodie
    Thanks Elodie – Looking forward to meeting you there, too! How lucky you are that it’s right in your back yard!

  13. June 2nd, 2010 at 08:27 | #13

    Kristen :

    I’m not quite sure how this would work, but it would be great if women could somehow contribute their own perspective to their maternity-related medical records. Admittedly, I can’t specify yet exactly *what* this would contribute to a person’s records, but it seems to me that it wouldn’t be entirely unreasonable to *allow* a woman a 48-or-so-hour period after an appointment/hospital stay/etc. to contribute 150-250 words about her experience (maybe even according to a particular prompt or question/answer format). And yes, this idea is borne of Tricia Pil’s recent article documenting the diverging viewpoints (hospital, records, and her first-person account) on her third birth. I just wish that there would have been some way for her to document her viewpoint *in* her records immediately after the fact.

    I totally agree – Tricia’s story (http://www.pulsemagazine.org/Archive_Index.cfm?content_id=119) really got me thinking about what medical records might look like if they had the patient experience adequately documented. (Of course, it got me thinking about a LOT of other stuff, too. What a story.) Good news – Tricia is coming on as a contributor to Science & Sensibility to blog about the science (and sensibility) of patient safety in maternity care. I can’t wait!

  14. June 2nd, 2010 at 22:19 | #14

    Amy,

    You have so many questions, and already some nice answers…so I’ll just pick a few:

    Q: # What do you think are the most innovative ways women are using the internet or social media to have healthier, safer, and more satisfying childbearing experiences?
    A: I think sites like Angies List and even EmpowerHer.com are great for rating doctors and sharing honest womens’ health experiences. I’ve read about one doctor (an neurologist, I believe)who was trying to promote the practice of doctors REQUIRING their patients to sign a document stating they would NOT rate the physician on one of those sites…all this says to me is that a doc (or other health care provider) who asks their patients to sign such a document has something to hide.

    Q: What do you think would be the most important benefits (and for that matter, risks or drawbacks) of having complete, unhindered, timely access to your maternity care records?

    A: For patients who have complicated medical histories or situations, having access to their own medical info. can help expedite assessments by new consultants and, of course, their own personal research into their condition(s). I do believe hospitals/offices would delete or purposely NOT include info. in medical files if made electronically available to patients. Perhaps legislation should follow the digitalization of medical records, that deems such deletion of information a criminal offense?

    Q: # What obstetric routines or beliefs would you most like to hear me critically analyze? I promise to make at least a blog post or two out of my How Not to Get Duped talk. (Actually, what I’ll also do is write parts of the talk from my prior blog posts, so if you have any favorite posts from the archives that you think would make good case studies, please suggest them!)

    A: A couple of issues that drive me CRAZY as a healthcare provider and childbirth educator are: 1) the “advanced maternal age” card which “dictates” a higher level of intervention throughout a woman’s pregnancy and certainly approaching and during birth if she is over 35. 2) The numerous and often ambiguous “reasons” for inducing or augmenting labor…especially without sufficient informed consent happening (women are agreeing to these procedures and practices without REALLY knowing what the risks are).

    Thank you for all your incredible work for women, children and families!
    Kimmelin Hull

  15. June 3rd, 2010 at 18:44 | #15

    Part 1:

    1. Innovations on the Net

    I think we know that FB is a really important way for women who have the same mindset to keep together, but I don’t think it is the main way women actually meet and learn about different ideas regarding birth. I think Google is the main path towards exploring options. (Other Search Engines are probably involved, too, but Google is the SE I use.)
    I believe women look for help on the Net in the middle of the night after they’ve had a difficult/traumatic birth – wouldn’t it be nice to have a site that all questions that say, “I’m terrified because of my birth experience” or “I can’t stop thinking about my birth” or “I hate my doctor, can I cut his testicles off?” went to? I don’t think the Net has matured enough for such a website, but it’s a nice dream.

    2. Data I’d like to see

    Cesarean Rates: by Doctor/CNM/CPM/hospital/birth center/homebirth/County; Cesarean Rates by: Primary/TOL/Repeat/Maternal Request for Primary/Maternal Request after Previous Vaginal Birth; Genital Surgeries done within 1 year postpartum (note if after Vaginal Birth or Cesarean); Cesarean Incision Infection Rates up to 1 year postpartum… by Woman/OB/Hospital; Antibiotics women take for a birth-related infection up to one year postpartum (Vaginal Birth/Cesarean); Hospitalization Rates for Psych Disorder within 1 year postpartum (Note Vaginal Birth or Cesarean); Cesarean Rates: by Age/Education/Income
    I’m sure I could think of more if I kept going.

    3. Data that should be documented

    See above + what is hard about asking what we’d like would require even MORE charting by the nursing staff, taking even more personal care time away from the women. What I would like us to do is find a way to utilize the information there already is in charting and use it to our advantage. I would like to see classes/blog posts/articles about what charts are saying inside them. (I think I’ll start one now!) No discussion of charting can be complete without noting that charting is subjective. Numbers are not, but charting is. It’s vital for women to know that just because they read something in the chart doesn’t mean it is true.

    4. Benefits of electronic charts

    I have access to my chart now through Kaiser HMO and it has transformed my feelings of empowerment. My records are no longer in that Too-Holy-For-You-To-See place. By making medical records immediately accessible to each person/woman, our healthcare takes on an entirely new persona. Doctors/RNs/CNMs/CPMs no longer only answer to each other or a lawyer, but also to the client/patient; what is written will be seen. Having someone looking over your shoulder changes the way you speak/act/respond. I also believe it becomes a tangible mirror for what the patient/client is doing as far as self-care goes. Hearing test results is very different than seeing them, especially when you can see them serially.

    5. No idea

  16. June 3rd, 2010 at 21:56 | #16

    If I wait to write something longer, I might not write it! So: a friend who was a midwife in the UK told me that they had to chart the reason if baby was NOT skin-to-skin with mom after delivery. That sounds pretty good to me!

    Also: medical justification for every formula supplement given. A girl can dream!

  17. June 4th, 2010 at 02:04 | #17

    As requested, these are my “out of the box” thoughts for Health 2.0:

    3. What kind of data do you think should be documented in electronic health records during pregnancy, birth, and the postpartum and newborn period? Think outside the box.
    I haven’t personally seen many birth records for babies, but my impression is that what is documented amounts to little more than “is breathing and has a pulse.” (yeah, muscle tone, etc., from Apgars). My “outside the box” is that, really, birth is all about having a BABY, yet how the baby is impacted by their birth is almost never considered unless there are obvious physical/physiological problems. Add to that the obstetrician is no longer the infant’s care provider once they are out, which adds to the disconnect between birth and baby’s experience and longer-term effects. I’d like to see cortisol levels (saliva is easy to gather and less intrusive than suctioning) and subtle neurological signs documented (see Eishima, K. (1992). The effects of obstetric conditions on neonatal behavior in Japanese infants. Early Human Development, 28(3), 253–263.
    and http://tinyurl.com/2aepb2o for examples)
    From my own research, I’d like to see timing and dosage of medications used (e.g., how much Pitocin, how titrated, for how long and at what stage(s) of labor). It would help parents, and therefore therapists like me, make sense of the recapitulation patterns of infants and children and help them to resolve those effects earlier, rather than later. I want to know more about babies’ functioning in the newborn period. Sometimes “colic” can be tracked back to interventions and experiences at birth that baby has not had the opportunity to process. Good birth records could point the way. Would like to see suctioning/intubation etc., accurately documented—we know it affects breastfeeding in many cases¬—it’s a treatable problem if we know what actually happened.
    5. What ongoing or forthcoming projects in the maternity care world could use the insights or funds of outside (non-birth-enthusiast) social innovators?
    I don’t know about the projects, but I would like to see the insights from prenatal/perinatal psychology incorporated into projects in the maternity care world. Much as I know you are passionate about maternity care, the bottom line is the point of maternity care is the birth of a baby, with hopefully a healthy, happy mama and baby the result. We need to be questioning virtually every newborn intervention with fresh eyes and informed by research *and* “anecdotal evidence” (which, truly, comprises the reports of the real experts: parents, nurses, midwives, doulas, observant and sensitive MDs): why suction on the perineum and when is it actually useful. Why baby hats? Why Hep. B shots for all babies at birth? Why swaddle? Why have mother sitting up when her baby is given to her (as opposed to reclining or supine, both of which facilitate the breast crawl and instinctive correct latch) ? Why clamp and cut the cord in the first hour? Why move baby away from mother? Why a nursery stay for a healthy baby? Etc., etc. I’d like to see studies that support physiological birth from the baby’s perspective, as well as the mother’s. What supports attachment and bonding? What can hospitals do to facilitate these?

  18. June 4th, 2010 at 08:02 | #18

    @Kimmelin Hull, PA, LCCE
    I agree that the Angie’s List and similar sites are a very interesting development (and truly unstoppable by doctors, whatever they try to get their patients to sign). Do you know about The Birth Survey? http://www.thebirthsurvey.org. I think TBS has so much potential and is stronger than many of the other doctor-rating sites, but it seems like the phenomenal grassroots effort that birthed The Birth Survey has fizzled out somewhat. There’s so much data already in there – I would love to free that data set and see what kinds of insights we can find.

  19. June 4th, 2010 at 08:32 | #19

    @NavelgazingMidwife
    Thanks Barbara for your input here (and for blogging it on your site!). Your experience having access to your medical records through Kaiser completely echos so much of what I have heard from others in the Health 2.0 community – better care, better accountability, and better ability to track one’s own health and see patterns and take action. I’m going to interact with some people involved in Kaiser’s open medical record efforts while at Health 2.0 and will ask about how they are dealing with the disincentive to document adverse events, mistakes, etc.

    I agree that the internet serves a critical role in helping traumatized women find the support they need, share their stories, and make sense of what happened to them. But I would hope that our ability to connect and access information could help *prevent* some of these traumatic birth experiences. I know that involves system and culture change, but I’m bold enough to say that I think that we’re in the midst (or on the cusp) of system and culture change. I can hope so, anyway. BTW, do you know of Solace for Mothers? I think that’s the space where women *can* say the things you wrote. http://www.solaceformothers.org/ Whether Google can point a desperate woman there easily or not, I’m not sure.

    I think the point about not creating more charting is an important one. I took part in the MANA Statistics Project when I was practicing and, on the one hand, I absolutely supported and loved it and on the other hand it was literally 30 minutes more work for every birth I attended. It would have been easier if my own charting could link up automatically with the statistics project so I’d only have to document once. Do you know any home birth midwives using electronic health record programs?

    I’m not sure what the answer is to keeping data collection simple, although I think that linking the mother and the baby’s medical records (which would address some of Claire’s concerns) and letting the woman add to her own medical record would be part of the solution. I also think that you make a very good point about the need to link outcomes that are birth-related but don’t get diagnosed right away back to the birth. A good friend of mine recently had a c-section (first baby), went home on day 3 and found herself back in the hospital 4 days later hemorrhaging to near death, getting multiple transfusions, having a hysterectomy, and ending up in the ICU for several days. In addition to all the other thoughts and emotions I had when all of this happened, I thought to myself, “I doubt that hysterectomy and near miss event will even be collected as postpartum data.” Which of course serves to mask the dangers of c-section, because data collection so often ends with the hospital discharge. Another poignant example of this has been happening just this week on an old post that Henci wrote about cesareans and endometriosis that still gets steady traffic every month. Two women who are sure that they have cesarean-related endometriosis have found each other in the comment thread and the stories about their doctors not believing them, the multiple tests and treatments theyve tried, etc. are heart breaking. http://www.scienceandsensibility.org/?p=147 I think this is an example of where patient communities can help. CureTogether.com, where people can track their symptoms and treatments, is getting a lot of attention right now and I keep thinking that it would be great to get people with chronic pain or pelvic floor problems to be able to share their data so that we could see patterns including associations with obstetric interventions in labor and birth. http://curetogether.com/

    Even if we didn’t add to the data that is collected, think of how much data *is* collected and *never* used to improve care. And all of the things that get asked and documented 10 times during labor – for the nurses assessment, OBs, residents, anesthesiologist, admission personnel, etc. Imagine if the woman herself presented at the birth facility with her own medical record and everyone could immediately and seamlessly connect that data to their own records. She might be able to labor if they would all shut up and stop asking her if she has a living will or if this is her first pregnancy.

    Thank you SO SO SO much to all who are taking part in this conversation. I know data and conversations about electronic health record systems are kind of dry and boring (although not necessarily – everyone should go check out Regina Holliday’s mural work and advocacy! http://www.open-health.us/topics/reginas-advocacy-timeline), but I think moving to a truly mother-centered maternity care system will require us to free the data, reclaim the data, and start tracking more patient-centered data.

  20. June 4th, 2010 at 09:27 | #20

    Hi Amy, in the majority of public health maternity units in NSW, Australia, all the woman’s information is put into a database each visit and at birth etc. The woman is given her own copy of the information and she carries that with her where ever she goes; there were ideas about giving the woman a USB stick with her information on it, but privacy concerns stopped that idea. On the database there is a place for developing a plan for antenatal, intrapartum and postpartum choices. The woman and her midwife are supposed to do that together. Obviously, with one to one care models, there isn’t the repetition of the woman’s story, but everyone who has access to the database and who needs to know, uses a pin to access data. The system monitor people (senior midwife in each maternity unit) can check that all those who look at women’s records have a legitimate reason for doing so. The data is collated every month and produced as graphs to show the incidence of various aspects of women’s experiences and care outcomes and those graphs become a source of Quality Audit and improvement ventures. That’s how we got the data to compare the rates of PPH with matched cohorts, after Ethics and management approval. Skin to Skin time is part of the data collection; initiation of B/F timeframe and also birth position as well as the usual information. All very important information to evaluate what is happening to women and check if it is good.

  21. June 4th, 2010 at 10:05 | #21

    @Rebecca
    The duration of skin-to-skin contact and reasons for it not occurring are definite additions I’d like to see to the medical record. I wrote about efforts in this area in the wake of the new Joint Commission perinatal core measures and some interesting work Loma Linda University is doing in this area http://www.scienceandsensibility.org/?p=1171

    If you have other ideas, please share them. I’d love to hear from a recent MPH (in particular: you!) about how these issues are being discussed among the up-and-coming public health professionals.

  22. June 5th, 2010 at 12:58 | #22

    One thing that would help would be a set of truly informed consent forms together with documenting information on topics such as cesarean surgery, VBAC vs. elective repeat cesarean, induction, epidural analgesia, electronic fetal monitoring, episiotomy, early cord clamping, etc. that hospitals would be obliged to provide at the beginning of the third trimester to all women who planned to birth there. CIMS has one on cesarean on its website developed by Nicette Jukelevics and me with input by others, including Dr. Charles Mahan: http://motherfriendly.org/pdf/TheRisksofCesareanSectionFebruary2010.pdf. The materials would be developed by a group including all stakeholders and government funded, since the potential for improving health care while reducing costs makes the government the biggest stakeholder of all. I would nominate Childbirth Connection to manage the project as they have impeccable credentials. While we’re at it, all women should be handed a fact sheet on the harms of formula feeding at the same time along with a list of resources to assist women planning to breastfeed. CIMS has a fact sheet on breastfeeding as well: http://motherfriendly.org/pdf/BreastfeedingisPricelessMarch2009.pdf. Naturally, the information would be available in multiple languages and in simple language versions.

    Also, we know from the research that nurses don’t provide much in the way of supportive care. I can’t remember where I read this–probably in something by Ellen Hodnett–but what gets documented is what is considered important. Along the lines of the previous commenter who said that in the U.K. care providers had to document why the baby WASN’T put skin-to-skin, what if nurses had to document the provision of supportive care? Maybe it could be done as a checklist so it wouldn’t be too onerous. Come to think of it, a checklist might give nurses some ideas as well. The list easily could be generated from the research into supportive care.

  23. June 6th, 2010 at 08:18 | #23

    I just went to the US Botanic Garden and think that could be an interesting kid trip. There’s a room of touch, smell, and see activities and a really great canopy walk. I’ve also heard something about a butterfly conservatory that’s worth looking into. Oh, and of course the National Zoo is great for kids. It’s at the Woodley Park Metro station on the red line, which is the same stop as the ACNM Annual Meeting.

  1. June 1st, 2010 at 15:29 | #1
  2. March 6th, 2013 at 16:59 | #2