#SXSW : Fertility Insights, Part 1

As a first-timer at SXSW, I had no idea what to expect. I wasn’t primarily attending as a reproductive endocrinologist, but because I never really take that hat off, I dropped in on some great sessions that I couldn’t help but filter through my professional lens. Here are some of the insights I found most thought-provoking:

How much health information do people want? The first session I attended was about empowering people to own their health data. I was thrilled to hear from one of my former #dukemed professors, Robert M Califf, who set the stage for this question:

• On the one hand, the principle of autonomy suggests giving patients unfettered access to their lab results or even the ability to choose what tests they should have.
• On the other hand, some individuals may not want this level of detail, may not have sufficient health literacy to process such information, may suffer from depression or dementia or altered mental states that interfere with processing the information, or so on.

There is no one-size-fits-all approach. The challenge is figuring out how to personalize what information people need, and something I have to think about constantly in the fertility world. Some of my patients want very detailed explanations of every lab test that was drawn and what it means; others mostly want to know if everything was okay or not.

I think one of the great luxuries of my job is that having an hour-long introductory consult means I have a lot of time to explain the basic diagnostics. If someone tries to get full preconception or fertility counseling during their 15-minute annual examination with their gynecologist, this level of detail is hard to reach. I have lost track of how many women have come in with lab results or diagnoses they don’t really understand, and later said to me, “wow this is the first time all of this [fertility stuff] was explained to me like this!”. Women should be empowered to be the keepers of their own fertility and reproductive health, and we can and must address barriers to this goal.

What kind of healthcare do people want? Bray Patrick-Lake, another excellent panelist and patient advocate, said something I haven’t been able to shake. She said that her impression of her primary care provider was that she’s not cutting edge because her visits focus on screening for seatbelt use, domestic violence, cancer screenings, and she was discouraged from bringing in her extensive self-research into her genetics… and that if she ever received an actual medical diagnosis, she would probably find a new doctor.

I felt for her PCP. These screening questions are all mandatory ones (that can and do save lives), but unfortunately, they often take up the majority of time modern-day U.S. physicians are allotted with each patient. There is a reason that the concierge medicine concept is taking off. However, the point is well-taken. What can we change in the U.S. healthcare system to allow clinicians the time and resources to provide evidence-based preventative screenings and to also go beyond, in whichever ways an individual patient would find helpful? (Hint, I don’t have space to tackle this here but there are a ton of possible fixes!).

What does this mean to fertility patients? Well, reproductive medicine is exploding — both in terms of industry invasion into the “fertility space”, and in terms of scientific advancement. A visit that shuts down discussion of the latest technological options (like expanded genetic carrier screening or preimplantation genetic screening of embryos during IVF), complementary treatments (acupuncture, for example) or lifestyle modification (optimizing weight and general health before conceiving) is one that will (and should!) turn people off. And yet, I know that I’ve had to learn about complementary treatments on my own time — and that many doctors will avoid touchy lifestyle topics like weight loss, even if it can lead to a healthier pregnancy, mother and child. Again, we can do better.

What health information would make a difference? Examples were given in this panel, as well as another on a data-driven approach to the Cesarean section epidemic, about the limitations of providing complete data. Dr. Califf and Ateev Mehrotra (who works at Ariadne Labs with my friend, former college classmate and general rockstar in the world of quality maternity care, Neel Shah) both described studies in which some people were given comprehensive healthcare information, others not, and their decisions observed. In the latter case, also in the world of reproductive medicine, users of a pregnancy app were offered information about the Cesarean section rates of hospitals in their geographic area, with the hypothesis that such information might push them to choose hospitals with lower rates. It didn’t. Why?

I wonder the same thing when I see second opinion consults for patients who have pursued IVF at a center that has pregnancy rates much lower than the local or national averages, and I think the answers are very similar. Chances are: they didn’t know this information was publicly available, the statistics were overwhelming (there is an insane volume of data for each clinic!), they liked their doctor, they were referred there by a friend who got pregnant, the office location was convenient or well-appointed, they believed they’d beat the odds regardless of which center they used, etc.

If we want to use market forces to drive individuals toward the best places (and to thereby encourage other places to catch up), we must do a better job of figuring out what information, and which method of presenting it, actually speaks to people.

Are these questions all coming from a place of privilege? There is an important social justice angle to this discussion. If data indicates zip code and credit score are among the biggest determinants of health, and if there are stark disparities in maternal mortality rates by state, and if many people cannot afford appropriate medical [such as IVF!] treatments (all 3 are true statements made by SXSW panelists), then shouldn’t we first focus on access to quality care?

I think pursuing the issues of access and quality aren’t mutually exclusive or necessarily ordered, but that we must be careful to not only focus on more and more application of resources and technology to the wealthier segments of society. I would love to see more brilliant minds tackling fundamental issues of healthcare knowledge, access and disparities. For example, why is it that non-White women have lower IVF success rates in the U.S., even after controlling for other factors? What can be done to improve access to and comfort with fertility care among Black women, who have historical and ongoing reasons to distrust the healthcare system and who access fertility treatment at lower rates and after longer delays?

I asked the panelists: how can we improve the PR of scientific research and evidence-based medicine? Dr. Califf relayed a quote that made me laugh: “For every question, there will be an answer on the Internet. Making up the answer is more satisfying than research-based approaches.” Given that, I ardently support their answers: improving Google search results [because patients are gonna Google!], better utilization of clinicaltrials.gov [so people can better access and understand research], lay summaries of studies and guidelines, more people reading specialized health-related blogs, and greater ability to break through the barrier of medical jargon. My own related wishlist item is expanding access to PubMed — the online repository of peer-reviewed scientific papers to which not even every doctor necessarily has full access!

Final thoughts for today: In thinking about the first few SXSW sessions I attended, my fertility-relevant takeaway was that we need to better answer these questions: What reproductive health information actually matters to women? How can we intervene and package pro-wellness messages to make them more meaningful and impactful in (1) driving healthy lifestyle choices, (2) influencing the selection of healthcare providers and hospitals/clinics offering the highest-quality care, and (3) encouraging the most appropriate healthcare decisions?

These are big asks! Happy to see any thoughts in the comments. And thankfully, Insights Part 2 is not as high-level in asking such daunting, almost philosophical questions — so stay tuned!