Redefining healthcare: How patient innovators are making a difference
Jean-Marc Bourez, CEO at EIT Health comments on the potential of patient innovation to transform healthcare.
There is progressively more recognition of the fact that patients are experts in their own conditions. Patients can be resourceful and highly capable of conceiving cutting-edge ideas and developing sophisticated solutions that best meet their needs. To reap the full benefits of patient-driven innovation, the perspectives and contributions of patients must be foregrounded at the earliest opportunity in innovation pathways. To ensure that new models of healthcare take root and more meaningful patient outcomes are achieved, it is crucial that greater efforts are made to support the development of patient ideas and ensure continued patient input along the entirety of the innovation pathway.
A new frontier for healthcare innovation
Historically, innovation in healthcare has been synonymous with the development of breakthrough therapies, drugs, and medications, pioneered by big industry players, such as pharmaceutical and medtech companies.
Yet, faced with frustrations that current care options on the market do not always effectively address their daily needs; a desire to be able to enhance the management of their health conditions, and further heightened independence and ownership over their experience with care; patients are more widely acknowledged as powerful innovators.
Indeed, there is an increasing recognition that patients have unique insights that enable them to develop meaningful, ‘out-of-the-box’ solutions capable of improving their ability to manage their health conditions and address market shortcomings.
Just take EIT Health-backed, Barcelona-based company Biel Glasses as a case in point. When Biel was born with low vision, his parents explored existing solutions on the market to help their son overcome the many debilitating challenges he was facing; falls, injuries and disorientation, which resulted in an inability to move around independently. When solutions available on the market didn’t meet Biel’s bespoke needs, his parents, medical doctor Constanza Lucero and electronics engineer Jaume Puig decided to explore, with their combined professional expertise, whether they could create a solution, not just for Biel, but for others affected with the same condition.
Jaume Puig, CEO & co-founder of Biel Glasses said: “As parents, we refused to accept that our son Biel would be held back by his impaired vision. Frustrated by the lack of adequate solutions on the market, we were determined to find a product that allowed Biel to live life to his fullest and explore the world around him - without the hazards associated with low vision. The result has been truly life-changing for not only for our Biel, but for many others with low vision.”
Jaume and Constanza successfully created an advanced, affordable, and personalised solution that continues to empower patients with impaired vision to adapt to the world around them. Developed by patients and for patients, Biel Smartgaze are the first smart glasses device on the market aimed at improving mobility for people with visual impairments by recognising and signalling obstacles, ground changes, and traffic lights. Biel Glasses is just one of the many EIT Health-supported success stories to have emerged from patient-powered solutions.
Just from this one example, we can see the clear value that the patient perspective and active involvement can provide - empowering them with the necessary tools can lead to the development of solutions that have the potential to meet the most important outcomes that matter most to patients, thereby boosting the effectiveness, and efficiency of the options available to patients.
Patient innovation as a complement to existing innovation pathways
Despite the promising potential of patient innovation, there are still barriers to overcome. It is yet to be considered mainstream, and patients are often side-lined from the innovation process. As a result, too often, their insights are only sought in the final stages of product testing and validation.
This disconnect between developers and end-users has real-life implications. If patient experiences and needs are not incorporated into the product development process at the earliest stages – assessing unmet need through insights generated directly from patients, as well as ideation itself, solutions coming to the market may miss the mark in effectively reflecting the outcomes that make the most meaningful differences to the lives of patients.
Further, not all conditions receive the same level of attention and investment, meaning there are specific health needs that go unaddressed. Indeed, thousands of rare diseases are chronic and pose life-long challenges for over 30 million patients in Europe living with them. Yet, the complex process of developing treatments for rare diseases is primarily attributed to their predominantly genetic characteristics and the limited patient pool available for clinical trials. This leaves patients suffering from rare diseases with limited avenues for treatment and management.
Regulations governing clinical trials also pose financial and time obstacles for innovators looking to get their solutions to market, thereby holding them back from bringing their solutions to fruition in some cases. For example, to gain CE marking on medical devices in the EU, producers require Medical Device Regulation (MDR) compliance, which is a lengthy and expensive process.
In the words of Jaume Puig: “Patients are agile and willing to overcome barriers, but they don't have the financial resources to deal with MDR costs and other barriers to bring their innovation to market. The innovation and regulatory ecosystem in the EU must change to make it easier for patients to innovate. It is necessary to create specific R&D grants and incentives to facilitate patient innovation. We don’t want to be heroes, we want to live a normal life, find solutions for ourselves or for the people we love, and not lose the ability to care for ourselves or for them by having to make an epic effort to innovate.”
Championing patient innovation
EIT Health is uniquely positioned to foster the reinforcement of the patient innovation revolution by encouraging a cultural shift to value-based, patient-centric models of care. By leveraging its extensive network of healthcare stakeholders, including industry partners, academic institutions, healthcare providers, and policymakers, EIT Health is fostering an ecosystem where patient innovators can thrive.
The healthcare organisations that pioneer Value Based Health Care or High Value Care catalyse transformation around core values such as patient involvement, team empowerment and accountability, end-result transparency, and continuous improvement. This cultural shift reconnects medical teams with their humanistic aspiration to deliver outcomes that matter to patients. By raising awareness of the value of patient-driven advancements, EIT Health can help with this shift and mobilise industry actors to support the development of these solutions. Training and mentorship programmes, such as the Patient Innovation Bootcamp, which we help implement with our Partners, provide patients with the necessary expertise and resources to turn their ideas into market-ready innovations.
EIT Health can also contribute to shaping innovation-friendly policies by engaging with stakeholders in critical conversations about current healthcare challenges and opportunities.
Looking ahead: putting the ‘patient’ back into patient care
Patient-driven innovation represents an exciting dimension in the broader healthcare system. Empowering patients as problem-solvers will enable us to address the blind spots in our traditional model and take us one step closer to building a system that places patients at the fore.
Yet, the transformative potential of patient innovation will go wasted if we do not mount concerted, conscious efforts to support policy, practice, regulation, and research that will sow the seeds for patient-powered solutions to flourish.
The challenge to measure Patient Reported Outcome Measures (PROMs) and Clinician Reported Outcome Measures (CROMs) is related to the fragmentation of multiple proprietary systems and data repositories which makes it hard to develop a holistic view of the individual’s health or the care the patients have received. However, for most data platforms the process is simple. Patients complete an online PROM survey while waiting for their appointment. The survey results are then immediately available during the consultation and stored in a searchable database. With access to this new data, clinicians and patients can devote more time to discussing the best possible care options.
On the policy front, there must be a strong push to provide critical support for innovators and patients to become meaningfully involved in the development of medical breakthroughs. Both EU and Member State level actors must play a stronger role in helping to democratise the traditional process, breaking down the barriers that have long side-lined patients from the development of healthcare solutions.
There should also be a critical consideration of the existing methods and approaches currently employed to support patient involvement in health innovation. At every stage in the process, healthcare disruptors, researchers and regulators must commit to including patient insights and experiences to ensure a more participatory process.
For the fruits of patient innovation to take root, there must be enhanced public advocacy. Through research and regulation, we can begin to build consensus on the principles underpinning meaningful involvement, implementation, and evaluation from stakeholders across the ecosystem.
As leaders in the European health innovation space, we at EIT health, supported by the European Institute of Innovation and Technology (EIT), a body of the European Union, certainly have our work cut out for us in continuing to shape the environment for patient innovation to thrive. Yet, driven by the conviction that patient innovation can plug the gaps in our current healthcare system and improve the lives of patients across the continent, we are energised by the work that lies ahead of us on our road to championing patient-powered breakthroughs.