Optimism. My faith and my family support provide me with the emotional boost to work hard towards our goal of a myeloma cure and a cure for other blood cancers. I am confident and optimistic that it can be done.
In recent years, Big Tech has gotten a bad rep. But of course many tech companies are doing important work making monumental positive changes to society, health, and the environment. To highlight these, we started a new interview series about “Technology Making An Important Positive Social Impact”. We are interviewing leaders of tech companies who are creating or have created a tech product that is helping to make a positive change in people’s lives or the environment. As a part of this series, I had the pleasure of interviewing Jenny Ahlstrom.
When Jenny Ahlstrom was diagnosed with multiple myeloma in 2010, she anxiously searched for treatments and research for a cure. She noticed gaps in solutions for patients — most importantly the need for simplified information that would help patients obtain better outcomes. Jenny noticed that childhood cancer clinical trials had 85% participation rates while adult cancers had dismal 3–5% participation rates. Many research projects were not completed because scientists could not find willing patients with these types of rare diseases. She set out to help educate patients and encourage them to participate in trials in order to move research forward at a faster pace. Through her experience in systems engineering and marketing, as well as her husband Paul’s experience in entrepreneurship, Jenny saw an opportunity to empower patients to take action toward accelerating cures for rare diseases.
Thank you so much for joining us in this interview series. Before we dive in, our readers would love to learn a bit more about you. Can you tell us a bit about your childhood backstory and how you grew up?
I grew up in San Jose, California for my entire childhood. Growing up in the Bay Area just as major tech companies like HP and Apple were getting started surrounded me with a culture of innovation that has affected me deeply. Watching someone build something out of nothing is inspiring and something I realized was possible. My early jobs were a reflection of that, and I was able to work in tech during my summer home from college. I went to Utah to college at BYU and then stayed in Utah, working at IBM as a Systems Engineer. My parents now live in Utah and I have two sisters. My husband and I have 6 children, five boys and a girl.
Can you share the most interesting story that happened to you since you began your career?
My husband told a family friend that I had just been diagnosed with cancer. His response was a surprising “Congratulations!” When my husband probed at the strange reaction to the news, our friend said, “Now you have a reason to look at the world differently.” His son had died on the operating table during a simple adenoid surgery. He was able to donate his son’s organs to help other children and then started a foundation for organ donation. He was right. Being diagnosed with multiple myeloma, launching the HealthTree Foundation and serving other myeloma and blood cancer patients has changed the way I view the world and how I spend my time. It has also influenced the lives of our children, who have become involved in supporting and helping patients. They are able to develop new skills as we work together as a family serving others. In many ways it has been a blessing.
None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are? Can you share a story about that?
My husband is my rock. He is a serial entrepreneur and investor (private equity and venture capital). He led out, taking immediate action for my care, finding support for the kids to keep the wheels on the family as I started my challenging tandem transplants (two transplants back-to-back). He has incredible problem-solving skills and has invested into or started over 150 companies. Because we know why startups fail, it was essential that we follow the guiding principles of startups as we searched for ways to help accelerate a myeloma cure using technology. Every time I would create a new program or platform, he would think of at least two more that would be helpful for patients. His strategy skills are unparalleled, and it has been his vision, unconditional love and consistent support that have brought us to where we are today. His confidence in me and the collaboration we share give me the strength to keep going. The creation process with him has been incredibly fun. He is truly amazing.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
None of us can escape adversity. It’s a part of life, whether that adversity is economic, health-related, relationship or otherwise. When I hit adversity, now I ask three questions:
1) What should I do? There are usually practical things we need to do in a crisis. Our first task was to find a myeloma specialist who could give me the best possible suggestions for treatment as soon as I was diagnosed. Because your first remission with myeloma is your best and most durable, finding the right treatment for your myeloma type is essential. My next task was to investigate potential clinical trials because more than 90% of myeloma patients eventually relapse. These “must-do” tasks led to the creation of many programs.
2) What am I supposed to learn? Adversity is a great teacher if you are open to the lessons. I’ve learned so much by having multiple myeloma and creating the HealthTree Foundation and its tech and programs. I always ask what I am supposed to learn from every stage of the process.
3) Who am I supposed to serve? Others struggle with similar forms of adversity. I like to ask myself what I can do to help relieve suffering. It helps others and it’s healing for me.
You are a successful business leader. Which three character traits do you think were most instrumental to your success? Can you please share a story or example for each?
1) Impatience. This is typically a character flaw, but having impatience around a cure for multiple myeloma has pushed me into the unknown to build things that didn’t exist before. Our fundraising slogan is “Can’t Wait for a Cure” because as patients we feel like we are playing “beat the clock” with an average survival of 5 years. That impatience led to the creation of the first crowdsourcing campaign to fund specific research. It also led to the creation of the first patient portal called HealthTree Cure Hub (www.healthtree.org) that provides practical benefits to patients who are trying to navigate their disease and doubles as a research portal. Now, we have almost 9,500 patients who participate in advancing real world research.
2) Determination. I am able to push through difficult things and tedious tasks. I have confidence that even though I may not know how to do something today, I can probably figure out how to do it, or find someone else who knows how. Patients have never been given the permission to become involved in their own cure. They lack programs or tech tools that can facilitate their involvement. But they have so much to add to the equation. For example, only 8% of an individual’s records sit in the Electronic Health Record (EHR) portal. The other 92% is scattered across various healthcare clinics or sits in the patients’ heads. Why not ask them to share it to advance a cure? Thankfully, a patient’s greatest asset is freedom. They can do anything they want with their data, so we provided them with tools to help them navigate their disease and invited them to participate in advancing research.
3) Optimism. My faith and my family support provide me with the emotional boost to work hard towards our goal of a myeloma cure and a cure for other blood cancers. I am confident and optimistic that it can be done.
Ok super. Let’s now shift to the main part of our discussion about the tech tools that you are helping to create that can make a positive impact on our wellness. To begin, which particular problems are you aiming to solve?
There are two key issues preventing progress today:
1. Disease research is too slow. It takes, on average, 17 years to go from an idea to an approved medication. At each step in the process, there are time delays that could be shortened. For example, patient recruitment for clinical trials is a major issue. Only 5% of adult cancer patients participate, so how do you advance the science in faster ways? Make it easier for patients to join clinical trials by building tools that help them contribute in meaningful ways — both in research for new drug development and in research of real world data. Unless you have real world outcome data, even technology like machine learning and AI is open loop.
2. Patients need immediate help to navigate a terminal disease. When you receive that “you have cancer” call, your world is turned upside-down. How do you find a specialist to treat your condition? Where do you go for accurate information? How do you decide on a therapy? What do you do at relapse? We provide practical, helpful software tools to help navigate these questions.
How do you think your technology can address this?
The HealthTree software suite includes over 8 integrated software platforms to address patient and research needs. The tools are successful because our criteria for creating a new tool has to answer two questions: 1) does this help advance a cure? 2) Does this build patient trust? If the answer to either question is “no” then we don’t do it. Inside of a non-profit, we’ve built a full product solution for patients and are expanding the tools to address the needs of researchers. They include:
- A news platform to share information about progress in myeloma in patient-friendly language (ex: myelomacrowd.org)
- A specialist directory
- Community forums for topic-based discussions
- Community events platform that can host live and virtual meetings
- HealthTree University, a one-of-a-kind “university” taught by specialists across the globe that answer any question a patient may have on the disease. The curriculum is organized from the most basic to the most complex, so newly diagnosed patients can binge-watch their way through the series of courses. (University.healthtree.org)
- A coach/mentoring platform to facilitate one-on-one interaction (myelomacoach.org)
- A clinical trial finder tool to make finding and joining a clinical trial easier
- HealthTree Cure Hub, a patient data portal to help patients track their disease, find appropriate treatment options, find “twins” with similar disease types, see relevant patient side effect solutions and a research function that allows surveys and studies to be performed.
Can you tell us the backstory about what inspired you to originally feel passionate about this cause?
Getting a diagnosis of multiple myeloma at age 43 was all it took.
How do you think this might change the world?
Our healthcare system is not set up today to find cures. Innovation in healthcare is incremental and takes too long. Having tools that both support patients while engaging them to participate in research will help speed research and develop new hypotheses. A survey that would have cost 250,000 dollars and taken two years to get approval can be done for free in 2 months with hundreds of patient responses. Study of data from thousands of patients can identify the best possible treatment paths, even for individual subsets of the disease.
I’m not familiar with those programs. Expanding the tools to other diseases require people who have pure intent to cure the disease.
Here is the main question for our discussion. Based on your experience and success, can you please share “Five things you need to know to successfully create technology that can make a positive social impact”? (Please share a story or an example, for each.)
I have three suggestions are taken in part from my husband’s book Nail It Then Scale It: An Entrepreneur’s Guide to Innovation:
1. Identify the problem you are trying to solve. (www.bigideacanvas.com). There are many examples of failed businesses because people failed to solve a real problem.
2. Create an MVP. Creating tech tools can get out of control fast. Spend as little money as possible and if you are going to fail on the idea, fail quickly. You can create a PowerPoint or alpha tool and show it to users to obtain feedback.
3. Do things that don’t scale. In 2018, we put 4 of our boys in the car and went on a listening tour. We traveled to 50 cities and met with over 860 myeloma patients in person to hear their feedback on the HealthTree Cure Hub software tool. We iterated on the product nightly. We slept in our beds 6 days that summer. While this approach doesn’t scale, it was necessary in the early stages to build a product people wanted to use.
If you could tell other young people one thing about why they should consider making a positive impact on our environment or society, like you, what would you tell them?
You can use adversity to your gain. Outward service heals the inner soul. If we want more meaning and joy in our life, get out and serve others.
Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch, and why? He or she might just see this, especially if we tag them. 🙂
Peggy Noonan. I am a fan of people who are willing to seek and tell truth.
How can our readers further follow your work online?
Thank you so much for joining us. This was very inspirational, and we wish you continued success in your important work.