Patient Entrepreneurs: The New Driving Force for Developing Health Solutions
Karin Hehenberger

atient entrepreneurs are another emerging category of patients, along with groups like patient influencers, who are changing the landscape of healthcare and drug development. They are a new driving force behind the development of health solutions that are “by the patient, for the patient.” Industry partnerships with patient entrepreneurs are growing, and they are increasingly paving the way for further embedding patient-centricity into the healthcare ecosystem. But how and why is this happening?

The global healthcare environment is changing. Where historically providers and payers made all decisions regarding treatment plans, the consumer, i.e., the patient, is gaining power. Patients are paying a larger share of the healthcare bills through higher copays and deductibles, so they are gaining awareness of costs and are seeking options and influence. The reach of these individuals is being scaled through social media, influential blog series, and of course by disease-specific organizations.

However, a growing group of patients are taking more and more control of their own and their peers’ destiny, the so-called patient entrepreneurs. They take ideas generated by their own “lived experience” and start new ventures that may become companies, large and small, through which they push the limits of innovation driven by a personal interest and importantly, a personal need. In fact, patient entrepreneurship is the opposite of “being patient.“ Because of their experiences, people who become entrepreneurs in their own disease may be more eager, more motivated, and more passionate about solving problems than regular entrepreneurs, and that indicates enormous impatience!

Patient Experience Makes for Good Entrepreneurs

I am such a person. Thirty-two years ago, I was diagnosed with type 1 diabetes and vowed to not let it stop me, but rather to drive me to work harder and faster to be “better” than if I had just been a healthy young person back in Sweden. I pushed myself almost to the point of no return, and I allowed my disease to almost kill me; it rendered me close to blindness, in kidney failure, and a walking stroke risk. It was not until I was “repaired” physically, over a period of approximately 10 years, that my mental state caught up and I knew what I needed to do, for myself and others. I had gone through major procedures such as kidney and pancreas transplants, multiple eye treatments, and a pacemaker implantation. With important learnings, I committed myself to helping others. I built a company (Lyfebulb) that was founded out of a determination to strengthen the voice of the patient and bridge the gap between patient communities and industry, because connectivity between patients as well as between care partners is key to empowerment. Innovation can be generated from those who experience disease, not only from those who treat disease.

Patient Entrepreneurship in Action

Industry is starting to recognize the value of patient entrepreneurship and is getting involved in the development of this area. Some companies, such as Lyfebulb, organize innovation challenges and other gatherings where patient entrepreneurs are connected to industry and their ideas and products are presented. The goal is to increase visibility, raise capital, and importantly to deliver products to an appropriate market, so that many people beyond the entrepreneur themself can be helped. These goals are aligned with those of the specific biopharmaceutical partner; hence it is a win-win situation.

The impact these products and companies have on society is huge, not only for their actual value as innovative products or services, but also for the benefit they provide to people who otherwise would be patients and now are productive leaders who employ peers and healthy individuals freely as the companies take off and become sustainable.

The following are just a few examples of successful patient entrepreneurs:

  1. Jeff Dachis, a marketing expert, who was diagnosed late with latent autoimmune diabetes in adults (LADA), reacted to his diagnosis a little differently than most: He speculated that the knowledge of the masses could help each individual and launched One Drop, leveraging big data and digital marketing to create a huge community of diabetes patients who share data that is then analyzed for the benefit of each person. So if a patient does not know how to dose their insulin ahead of a meal of nachos, there is probably someone in this community who does. And that knowledge is among many other benefits that patients gain by being part of Jeff Dachis’ community. Another important aspect, of course, is the knowledge large corporations can gain from these data points as they develop new drugs or devices, which is one reason why collaborating with patient entrepreneurs should be on the radar of companies in the life sciences industry.
  2. Jason Da Silva, a person living with multiple sclerosis who is almost completely disabled physically, has created AXS Map, a crowd-sourced data company that enables people to screen locations (such as restaurants, post offices, etc.) for their disability friendliness. The more people who input data, the better his tool becomes.
  3. In substance use disorder, patient entrepreneur and recovering addict Lisa McLaughlin has created an entirely new method of becoming sober. It also addresses mental health through Workit Health, a digital and live service platform for those who may not fit the model of Alcoholics Anonymous. She has shown that her model can be scaled. She contracts directly with insurers and employers to improve outcomes for patients.

Finally, patient entrepreneurs are leaders of not just early-stage companies; some of the world’s most impactful healthcare companies have been founded by patients. The founder may not always lead the company through growth and change, but in some cases, they do stay on and continue to further the initial mission that came from their personal experiences.

Novo Nordisk was cofounded by Marie Krogh and her husband August. He was a Nobel Prize–winning scientist; she was a physician treating type 1 diabetes patients who also happened to live with type 2 diabetes. She visited Indianapolis with her husband a few years after the discovery of insulin (Banting and Best in 1921) and was inspired by Eli Lilly’s manufacturing and commitment to people living with diabetes. She convinced August to bring back insulin to Denmark and started importing it to be part of what was then called Nordisk Insulinlaboratorium. Eventually they set up manufacturing in Denmark, leveraging the large pig population there for extracting the original insulins to be sold to patients, saving their lives.

As an example, Lyfebulb alone has now run 13 challenges across eight different therapeutic categories with hundreds of participants, creating a new network where development of quality-of-life solutions is shared and marketed solutions are co-promoted. Further offerings, including hackathons and workshops, can yield earlier stage opportunities that can also be partnered with and incorporated into biopharmaceutical companies’ pipelines and market research. Almost all patients can be trained to think more like entrepreneurs and thus take their advocacy to a different level and be more solution-oriented, improving outcomes beyond themselves. We see this in advocates who take their blogs beyond journalism and start advising and creating. Among some of the examples are patients who become food bloggers (Amanda DeJesus in transplantation), exercise experts (e.g., Charlie O’Connell and Fitscript for diabetes), and mental health coaches (Tina Clark in transplantation).