The Pursuit of Transparency
As we approach the next International Consortium for Health Outcomes Measurement (ICHOM) conference in November, we thought it was time to recollect one of the most touching outcomes talks from last year, “From Bedside to Boardroom: the Pursuit of Transparency” by Beth Daley Ullem. Beth is a mother and an advocate for improving children’s healthcare outcomes. In the talk, through telling her personal story, Beth describes the true importance of outcomes.
Whilst pregnant with her second child, Beth experienced interventions, which sadly resulted in the death of her newborn. Although Beth admits that there are a lot of great professionals working in the field, she also says that it is meaningless to only consider the good things, whilst refusing to take into consideration the things that didn’t quite work out.
Beth’s story also emphasises how difficult it can be to change the system. Firstly, not being a medic she found it hard to argue with the doctors. In her words, “the information and knowledge on both sides of the doctor-patient relationship is highly asymmetric”. On the other hand, Beth admits that she was lucky enough to have had access to academic papers, but for someone with no academic or medical background, challenging the system would be even harder.
After her infant’s funeral, Beth started asking herself which policies could be amended in order to make sure other families would not have to go through similar misfortunes. As she puts it herself, she has:
“grown up thinking how to make this world a better place and how to do better with the talents we have been given”.
Beth started by asking what a set of metrics to have good oversight into safety and quality looks like, and how organisations learn from that data to train the care team, improve processes, and change policies.
A few years later Beth got pregnant again. The baby she was carrying had a cardiac defect, which not only required multiple open-heart surgeries, but was also accompanied by other genetic anomalies. Beth decided that this time she had to use her skills and abilities to find the most suitable care provider so she was able to get the best outcome. To do so, she started looking for data points for numerous outcomes, including variations in surgical approaches and surgeon experience.
To her total surprise, the data she was looking for wasn’t out there. So Beth decided to collect as many data points as she could in the short period of time she had before her due date. What she learnt was that the most commonly used traditional surgical approach for the heart defect produced such adverse “side-effects” as altitude & exercise restrictions, and ADHD in later life. However, along the way she found that valve sparing operations for tetralogy, which were a big innovation in this field, could have better outcomes. Additionally, using this innovative approach would mean just one operation instead of multiple operations.
Having collected as much outcome data as she could regarding valve sparing surgery and high-risk pregnancy care outcomes for all the hospitals she was considering, Beth realised that every hospital had varied clinical outcomes across a broad range of different parameters.
At the end of her talk Beth concludes, “It takes the whole system to deliver good care. Sometimes it doesn’t matter how good the repair itself is, if some details go wrong, the whole care pathway might go wrong.”
Just hours before Beth went into labour with her second child, she was walking in a park, where she saw a quote by Margaret Mead:
“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”
Only groups of thoughtful and committed citizens can make our world a better place to live in, and Beth is definitely one of them. Click here to watch her talk at ICHOM.