Can patients be innovators?

Pedro Oliveira is Founder and President of the Patient Innovation Association. He is Professor MSO with special responsibilities in healthcare innovation at Copenhagen Business School and Academic Fellow at the Cornell Institute for Healthy Futures. Previously he was a Professor at Católica-Lisbon School of Business and Economics and International Faculty Fellow at MIT Sloan. He received his Ph.D. in Operations, Technology and Innovation Management from the University of North Carolina at Chapel Hill.
 

Patient videos

Pedro Oliveira, founder of patient-innovation.com, explains how patients can come up with innovative solutions to the challenges they face.


It was during some research that myself, and my colleagues, came up with the idea for Patient Innovation – a free, online platform that has been running since 2014.  

The research was about user innovation – it was a multidisciplinary study on the role of users in the development of new health-related products and services. It was during this research that we observed patients and caregivers actually developing their own innovative solutions themselves. This was happening fairly often, and we found some fantastic examples of patient-driven innovation that was supporting people in the management of their disease or condition. In some cases, the innovations had even saved lives.

Patients began innovating because they couldn’t find solutions on the market that truly met their needs – whether a walking aide for a patient with mobility challenges, or a strategy for managing a child’s behavioural problems. The solutions that patients and caregivers were finding on the market were either too expensive, or they weren’t quite personalised enough for their specific needs.

This all tells us what we already know, that scientific innovation alone is not enough. However, what I believe we haven’t yet quite perfected is just how involved a patient should be in the development of health innovation.

Patients are great innovators because …

Patients and caregivers know their condition inside out – they have experienced, firsthand, every pain-point, every frustration, every emotion. Patients themselves have deep-rooted insight that no amount of user-testing or co-creation could match. Patients also bring true innovation because their only motivation is to make their lives more manageable.

Traditional innovators, for example commercial organisations, have certainly woken up to the value of involving patients in the development of new products and services, however they will never be approaching it from the same angle. Patients are focused on answering their own needs, while scientists and research and development departments often also have to focus on achieving technological breakthroughs or achieving their commercial goals. There is a place for both; however the balance needs to be right so that everyone’s needs can be met. Patients should be firmly in the driving seat if we want a solution to truly meet the needs of the patient.

Why we developed Patient Innovation …

Such great examples of patient-led innovation existed, but they were not being shared. The challenges experienced by a patient or caregiver are likely to be similar to that of many other patients and caregivers. So, such solutions have the potential to help many others. Patient Innovation exists to facilitate exactly that – the sharing of patient-led innovation. By facilitating such sharing, we hope to give patients and caregivers the tools that can improve their lives.

It became clear that an online platform would be the best method of enabling this process, and so we set up patient-innovation.com, where people could share the solutions they have created. A team of scholars from Católica Lisbon School of Business and Economics, Nova Medical School, Nova School of Business and Economics, MIT and Carnegie Mellon University all contributed to the development of the platform.

So, how does the platform work?

The platform is simple – anyone can join by going to patient.innovation.com. If you want to browse what is available you can do that just by visiting our website. If you want to post a solution, you can register or contact the Patient Innovation team. Solutions that are posted are screened by our medically trained team to ensure that we are only making safe and effective solutions available via the platform. We already have over 1,000 innovative solutions available on the platform, including the three described below.

Clearing his lungs with sound

Louis Plante’s cystic fibrosis increased his risk of lung infections because the disease makes it difficult to clear mucus from his lungs. He used to spend four hours per day doing kinesiotherapy (chest clapping) to alleviate this problem. While attending a concert, he noticed that the vibration of the speakers had the same positive effect. Using his background in electronics, he developed a device that uses sound waves to help clear the lungs. After several years of R&D and clinical trials, the Frequencer was the first device on the market to use low-energy acoustic vibrations to reduce mucus viscosity and promote mucus flow in patients with cystic fibrosis.

App monitors ostomy bag

Michael Seres underwent a small bowel transplant followed by an ileostomy (with an ostomy bag). He had no control of the volume of stool output and had to learn to monitor its amount and consistency. He invented Ostom-i Alert: a sensor- based device that can be attached to any ostomy bag and sends messages via Bluetooth to a mobile app to warn the patient when the bag is close to full. The device has been approved by the US Food and Drug Administration as a Class 1 medical device and is commercially available through 11 Health, a firm founded by Michael Seres.

 

A shirt for showering post-mastectomy

Following a mastectomy, Lisa Crites was advised to avoid showering in order to prevent infection through the drain sites. Instead, she created a water-resistant garment to enable her to shower normally. Her Shower Shirt is patented, approved by the FDA as a Class 1 medical device, and commercially available in 36 countries.