Reflections and Synthesis
Conducting 15 interviews last week helped us to get on track. This week we slowed down a little and started to concentrate on synthesizing all the learnings from our interviews. We completed seven more interviews with patients and physicians and were fortunate to speak to a biomedical engineer, Dr. Harris, whose lab focuses on hydrocephalus and shunt devices. We are still on the customer discovery stage, but we started noticing many similarities and patterns in between the patient’s and doctor’s needs.
We received a new perspective and insight after our conversation with Dr. Harris. To the question, “what realm of hydrocephalus needs improvement: diagnosis, treatment, or post-op everyday life?”, she replied, “all of the above!” Hydrocephalus is considered to be not a common disease which is why there has not been a lot of research progress. But according to Dr. Hamilton, many older patients with hydrocephalus are misdiagnosed with Alzheimer’s disease. Therefore, awareness and education about hydrocephalus need to be enhanced. We asked Dr. Harris if there are new approaches to the treatment of hydrocephalus in which we could get by without the shunt device. She explained that in most of the cases, the problem is not in the CSF production but its absorption. More research is underway in understanding the pathophysiology of the disease for better and permanent solutions for which the patients so anticipate.
Talking to patients constituted a larger portion of our interviews. Having engineering backgrounds and spending most of our time in laboratories, interactions with patients were new to most of us. It was a completely different experience. I changed my view of hydrocephalus after the very first patient interview. Although we read about this disease and we heard neurosurgeons talk about it, patients transformed our understanding and made it real for us through their stories.
We talked to patients not only from the US but also Canada, Australia, and the UK. The healthcare system of these people varied — some of them never had to pay for any part of the treatment — but they all had many common problems associated with hydrocephalus. It really opened our eyes to some of the compounded struggles for Hydrocephalus patients living within the United States, who had to worry about thousands of dollars of out-of-pocket payments on top of a life-long disease. In terms of the treatment process, all around the world we saw that the problems tend to arise from the same source: the shunt. A patient from Australia diagnosed at the age of 61 could not be convinced by the doctors and his family to get a shunt. He said, “I am waiting for an alternative.” The psychological aspect of hydrocephalus is another common issue that we hear so often from our patients. These patients not only have to deal with a series of surgeries, insurance, lack of communication, activity limitations, missing school but they also live with a constant worry of their shunt failure. Our conversations with Amanda Garzon shed light on the mentally taxing effects of living with Hydrocephalus, sometimes leading to anxiety, PTSD, or learning and memory disabilities. However, despite all of that, what stood out the most was the strength of mind and positivity of every single one of these patients and their loved ones. With each interview, our team was warmly welcomed into their small Hydrocephalus community and everyone shared their stories with large smiles despite their challenges and obstacles. This past week, we also attended the Young Adult Hydro HA conference on Zoom where we were able to listen to more patients and parents and understand their struggles.
The plan for next week is to talk to more stakeholders and update our Business Model Canvas. Our team will also be (virtually) attending the Hydrocephalus Association Connect Conference — the 16th national conference by HA bringing patients, families, medical professionals, and researchers together. We are also working on a new set of questions for our customers with the goal of narrowing down our value propositions and converging on a single critical problem to solve.
