Prof. Laurie Hendren - Patient Researcher at the Winter School

John Kildea

March 2015

Prof. Laurie Hendren is a Full Professor and Canada Research Chair at McGill’s School of Computer Science. She completed her B.Sc. and M.Sc. degrees in Computer Science at Queen’s University, and obtained her Ph.D. from Cornell University. She has been an active professor and researcher at McGill University since 1990, has led many large software projects, and was made a Fellow of the Royal Society of Canada for her contributions to research in compilers. She was recently treated for breast cancer at the McGill University Health Centre, which led to her current involvement with an interdisciplinary research project there analysing radiation oncology patient data. This in turn led to her invitation to join the Winter School faculty. Below is a brief summary of her presentation.

Over the course of her 45-minute talk to the Winter School delegates Laurie outlined the various hats that she has worn - first computer scientist, then breast cancer patient, and now “patient researcher”. The delegates learned that designing an optimizing compiler to produce efficient code is not totally unlike treating a patient for cancer. The code and the patient are similar. They each need to pass through a number of transformations - surgery, chemo and radiotherapy in the case of the patient - so as to emerge new and improved. The main difference though is that the clinician only gets one go at it with the patient whereas the computer scientist can try over and over again...

Laurie talked about her medical data and how she got a letter in the mail congratulating her on a cancer-free mammogram, while her family doctor got the actual data that in fact indicated the need for further tests. Upon being diagnosed, Laurie consulted with colleagues, did her own research and decided she didn’t want breast conserving surgery, but rather discovered another option, a bilateral Goldilocks mastectomy (The Goldilocks mastectomy, Heather Richardson, and Grace Ma International Journal of Surgery, 2012-01-01, Volume 10, Issue 9, Pages 522-526). Realizing that she only had the standard 10 minutes with her surgeon, she prepared a 10-slide powerpoint presentation to convince him to try this new procedure. It worked, with both the surgeon and Laurie very happy with the outcome.  

After surgery, Laurie asked to attend her tumor board, but despite repeated requests she was not allowed. Thus, she required several meetings with oncologists to convince them to order the OncoType DX test, and to come to an agreement with her over the treatment plan once the results arrived. Based on her results she chose not to have chemotherapy, but did have radiotherapy.

Laurie spoke about waiting for her radiotherapy treatment plan, not knowing where she was in the system and how much longer she would have to wait. She was told that her plan would be ready in two weeks - the standard delay that patients are told. In the end it was done much earlier. Had she known she would have better prepared. There are many many waits than one must endure as a cancer patient and Laurie outlined the pain that is involved. Sometimes she had to wait extended periods in the waiting room with other patients, some who were very sick, others who had been coming for weeks and were used to it. It would have been nice to have had an idea in advance of how long she would have to wait so as to schedule her day and her life accordingly.

Laurie wondered why she, as a breast cancer patient had to wear a gown, when no sooner had she put it on that she had to take it off again. She asked the audience a question and got them to respond by holding up their hands. She then made them continue to hold their hands in the air and encouraged them to stretch them backwards as if they were on a breast board for treatment. Why, Laurie asked, do breast cancer patients have to go through this painful experience everyday? Is it necessary? Do we explain to the patients why they must do it? Do we think about why we treat in this way or do we just do it because we always have? Likewise, why do we advise patients not to swim during treatment? Is it because of the marks - Laurie found some great waterproof markers on the internet - or is it because of damage to the skin? It was hard to get a clear answer from her treating team and Laurie found that internet blogs by former patients were often more helpful.

As is standard practice, Laurie was not offered access to her data during her treatment and she only discovered later when preparing her Winter School talk that her treating team had a 3D skin-rendering plot showing the beams entering her body, see image. Had Laurie herself had access to it she would have known where to apply sunscreen to protect the irradiated area of her skin when outside in the summer. She has since shown her dose distribution to her physiotherapist who now better understands which of her muscles were affected by her radiotherapy so she can provide appropriate exercises.

Laurie highlighted many forms of personalized information that her planning team could have provided to her either directly or through the therapy/nursing staff that would have made a big difference. Why don’t we provide our patients with personalized information about THEIR diseases and THEIR treatments and why not let them help us help them? Laurie’s talk brought home the great need for patient-centered care and the great benefits in terms of improved patient experience that such care can provide.

Just after the Winter School, in February 2015, Laurie was listed by Business Insider among 54 women who rocked the Tech World -  she is the five of diamonds in their deck of cards. Laurie also rocked the Winter School and the organizing committee are delighted and very grateful that she accepted our invitation.

You can check out Laurie’s blog at flatchestedwarriors.weebly.com.