Doctoral Student Investigates User-Innovation by Patients


Leid Zejnilovic foto 2 

For the last four years the dual degree doctoral student in Technological Change and Entrepreneurship (TCE), Leid Zejnilovic, has been studying the role of ‘users’ as sources of innovative ideas for new Telecom/IT products and services. His most recent paper titled “User-Innovation by Patients” focuses on the health sector, an area which is still “understudied” but “very rewarding,” because “it touches the lives of so many people,” he explained. 


Leid Zejnilovic clarified that “the study in Portugal is, to the best of our knowledge, the largest survey of rare-disease patients designed to explore their innovation efforts.” According to some preliminary results it is possible to say: ”innovations developed by the patients have contributed to a significant improvement of the quality of life of the innovators.”

Leid Zejnilovic who is co-advised by Pedro Oliveira, from Católica Lisbon School of Business & Economics, and by Francisco Veloso, from Carnegie Mellon University (CMU), is also a member of one of the Portuguese leading research groups in this area, which has established an innovative social network for patients called Patient Innovation. This is a platform designed for patients and caregivers to show and share their answers and practical solutions developed to fight their diseases. For Leid Zejnilovic “this research is an exciting endeavour with the unique reward of helping others.“

CMU Portugal: You have been studying, during your dual degree Ph.D., the role of user-innovation in different sectors. In your second paper, you embrace the theme "User-innovation by Patients." Why did you and your advisors select the health sector?
Leid Zejnilovic (LZ): The opportunity to investigate the health sector came through my advisor, Prof. Pedro Oliveira from Universidade Católica Portuguesa - Lisbon. Among other research streams, Pedro Oliveira and his research team have been studying the role of patients in developing new treatments and medical devices. For me, it was easy to decide to join this project as a part of my Ph.D. thesis, for a number of reasons. First, the role of patients as innovators is understudied, and the existing literature indicates that their contributions are very significant and valuable. Personally, and as a researcher, I see this area very rewarding to work in, as touches the lives of so many people. Second, despite the remarkable knowledge already available, many people still do not have solutions for the health problems they face. The number of diseases and their complexity is so big that the system cannot cover them all well enough. This is particularly true for rare diseases, as for many there is no cure and even correct diagnosing is a huge problem. Third, understanding innovation efforts by patients is an important step towards creating a system that enables and stimulates patient-innovations and their diffusion to other patients who may benefit from them.


Patient Innovation brochure 2 

CMU Portugal: According to the abstract of the paper, you are investigating innovation efforts by rare-disease patients in Portugal. What have been the main conclusions so far?
LZ: The study in Portugal is, to the best of our knowledge, the largest survey of rare-disease patients designed to explore their innovation efforts. So far we have seen that more than 50% of 500 randomly selected interviewed patients claim investing some efforts to innovate. 15% of them have introduced some innovation, as compared to the existing practices. If we consider the estimations of rare disease patients, there may be about 7.5 million patient-innovators in Europe alone. Their innovations are mostly related to changes in behaviour and strategies to cope with the symptoms. But patients have also developed new treatments and medical devices, which is what we expected. Considering what makes them innovate, we find that it is the subjective perception of need that matters. Our results indicate that the innovations developed by the patients have contributed to a significant improvement of quality of life of the innovators.


CMU Portugal: In what ways do you think these conclusions can have implications for public policy?
LZ: Public policy in the health sector completely ignores the valuable knowledge generated by patients. There was never a serious attempt to measure or understand the patients’ innovative efforts at a national level. Furthermore, patients often experience strong resistance when they try to introduce their innovations. Once they solve some of their problems there is no incentive for them to move forward and diffuse their solutions. Judging by the observed motives for innovating, policy incentives designed to stimulate profit oriented entities do not work well in the case of patient-innovators. Our research opens a debate on the issues that policy makers need to consider for society to be able to benefit from these neglected innovation efforts.


CMU Portugal: What can be the potential for using innovation efforts by patients to improve research in rare diseases?
LZ: Today every individual is equipped with information and knowledge that is made relatively easy available through Internet. Patients are not an exception. They have strong incentives to search for knowledge and solutions for their illness. These incentives are stronger than those of hobbyists or individuals looking for online entertainment. Patients are also the ones that know very well their personal experience with a disease. One of the ways to externalize their tacit knowledge about the disease is through choices they make, solutions they come-up with and the way that affects their life. Knowing what patients are doing to cope with their health-condition and how they approach that process is a very important message. If these experiences are collected, evaluated, improved, and made available for both researchers and other patients, it can certainly help in guiding efforts and informing what can or should be done. 


CMU Portugal: Your research work is based on the perspective of user-innovation theory. Could you explain the importance of using this perspective and not another?
LZ: A common approach to look at innovation in medicine or health-care is to see what the scientific community (e.g., research labs and universities) as well as the big pharmaceuticals are doing. This approach has merits and has played an important role in understanding how to improve health-care. Yet, innovation by users is diverse and widely distributed. The solutions developed by patients typically tap unique individual strengths, knowledge, and abilities. Since there is a general increase in user-innovation due to the increasing knowledge and widespread technology tools, focusing on user-innovation enriches our understanding and improves chances to help a broader population faster and better.

CMU Portugal: Are there other research works related with "User-Innovation by Patients," or is this an innovative area?
Published research on the topic of user-innovation by patients is still scarce. Our research group is certainly among the leading groups worldwide. The topic is gaining interest, and this year at our annual meeting of open and user innovation community in Brighton (UK) there were several papers on user-innovation in health-care.

CMU Portugal: Could you tell me more about your research group?
We are a very dynamic, interdisciplinary and international research group that keeps building upon state-of-the-art knowledge. For example, in a different study, we are exploring how patients validate their self-developed solutions, and how to help them gain more credibility and visibility. Also, as a result of our research, since we observed that patients don’t have incentives to diffuse and lack a channel to facilitate the diffusion of their innovations, we have established a social network for patients. We think this project can be truly revolutionary and have an impact on the lives of many patients. It has quickly gained support from very distinguished individuals, such as Nobel Prize winners in the health-sciences, and other reputable researchers from different fields, like innovation, law, and medicine. More importantly, it has been enthusiastically supported by patients and patient groups. I feel this research is an exciting endeavour with the unique reward of helping others.


Leid Zejnilovic started his dual doctoral degree in the academic year 2009/2010, at the Instituto Superior Técnico of the Universidade Técnica de Lisboa (IST/UTL), at Católica-Lisbon School and Carnegie Mellon University (CMU), within the CMU Portugal Program, which is funded by the Portuguese Fundação para a Ciência e a Tecnologia (FCT). His research interests are Information and Communication Technologies, Innovation and Public Policy.

September 2013