With a background in IT and the healthcare system, Con Hennessy became CEO of OpenApp in 2017, having joined the company shortly after its inception, in 2002. He talks to RARE Revolution about the importance of patient-centricity and customer focus, and how integral his highly dedicated and collaborative team are to the success of OpenApp
CEO Series: meeting the beating hearts behind the RARE brands
What made you want to move into the wide world of rare disease, and then specifically OpenApp and what did that journey look like?
My introduction to the world of rare disease was mostly from a technical perspective working with the national health system in Ireland and seeing the significant difference translating a clinical challenge into a usable, long term sustainable technical solution can mean to the system.
OpenApp has been working for nearly two decades in the health domain. In hospitals we supported clinical teams around oncology patients, the data for team decisions and the clinical workflows. Progressing from this to work with the national health system around analysis of large sets of data across multiple aspects of the system including in-hospital data, family doctor data and community data.
It was through this relationship that we were introduced to the European Cystic Fibrosis Society Patient Registry (often acronymized to ECFS -PR) and were contracted to provide development and support for a rewrite of the patient registry platform. ECFS-PR was deployed by OpenApp in 2012 and continues to collect data to help improve standards of care, identify parameters for clinical trials, monitor efficacy of new treatments/medications, conduct research studies, and promote advocacy.
After delivering this platform to ECFS we decided to participate in ECRD in Berlin in 2014. It was here that our eyes were opened to the needs of many other rare disease communities. Since then we have been investing in our registry platform adding features to support the needs of patient groups, clinical requirements, academic needs, regulatory interactions and industrial partners. Today we provide and support systems for many different types of conditions all over the world.
What do you anticipate will be the biggest challenges and opportunities for your organisation in the next two years?
As is the case with most organisations, we anticipate that the consequences of the pandemic will be our biggest challenges. From lack of opportunities to meet patient organisations, to the pressure on the health systems to redirect funding for general health care, to the focus of researchers on many facets of COVID 19—all of these contribute to less opportunities to work with groups in the rare disease arena. Even with the uncertain current health landscape, we anticipate the registry market will continue to grow. We firmly believe in the merit of registries as a means for organisations dealing with rare disease to bolster community engagement with researchers, advance support of treatments, assess drug efficacy/safety and longitudinal data collection.
What is your proudest moment in your career thus far?
OpenApp was founded by Mel McIntyre in 2002 and I joined shortly afterwards. In 2017 Mel sadly passed away, and I moved from a primarily technical role, to managing the organisation. My background is quite a technical one, but I have been able to embrace my new role, in no small part due to having such a dedicated, motivated team around me. It has been a pleasure seeing them flourish and progress over the years. Thankfully, we have been able to grow and develop over the last couple of years while still upholding the company values Mel instilled. I’ve grown myself both personally and professionally, but would never have been able to do so without the help of many others around me.
What and who are your personal and professional inspirations and why?
I do not really put anyone on a pedestal as an idol, but I do like to understand the aspects of those I work with that makes them successful in their respective fields. From former colleagues I’ve learned that focussing on the user and listening to them will open your mind to the actual problems they need you to solve. From Mel, I’ve learned that generosity of spirit with co-workers and clients generates such a strong partnership where we are all pulling in the same direction. I’ve also been hugely inspired by the rare disease communities, especially when I hear the personal stories and the battles people have fought. Indeed, I challenge anyone not to be inspired and awe-struck by the determination and resilience shown in the face of such adversity!
What advice would you give someone considering working in the rare disease space?
Working in the rare disease space requires a lot of patience—mostly patience with yourself to understand all of the aspects that affect the various stakeholders, from proper data management, to health technology assessments, from GDPR to ethics, from Patient Reported Outcome Measures (PROMs) to phenotypes. Patience and understanding also with the client engagement as many organisations have limited funds and, rightfully, take their time when deciding who to partner with and how best to allocate their budget.
Do you think the government does enough for the rare disease community at a local and central level, and what gaps do you see currently or emerging?
I think it is fair to say that it is only in the last few years that most government agencies have started to understand the rare disease communities and the daily burden they bear. As these agencies develop their understanding, they are also coming to the realisation that the barriers are numerous and varied. Some of these barriers need a coordinated approach within the system such as improving the awareness of rare diseases, to the time taken to the correct diagnosis, to the availability of genetic testing and subsequent counselling, to the streamlined care pathways, and community support. Beyond these there are other gaps that need a wider regional and maybe international and inter-agency collaboration, and definitely the engagement with organisations beyond the health or social care space. These gaps include supporting research, streamlined ethics for research across many institutions, support research in the care setting, support of patient advocacy groups, and newer models of engagement with academia and industry.
What would you say are some of the biggest motivators for your employees?
We have a diverse team of employees hailing from many different backgrounds and nationalities. They are all highly motivated and focussed on the customer experience, to deliver a usable system to the end users, value for the customer, and a consistency of service. As would be expected, we also have many employees with direct experience of the rare disease communities and the problems encountered there. So they are passionate about helping the communities in meaningful ways too.
What are the toughest parts of being a CEO, and conversely what are the most rewarding?
Making decisions knowing that some of them will be wrong can be tough, but it is softened by knowing that the team around me gets behind decisions, and yet are still open minded enough to challenge my approach when the circumstances change or results do not evolve as expected. One of the more rewarding areas is fostering a relationship built on trust and teamwork with my managers, and seeing the quiet evolution of those around you into highly effective, mature team players.
What would be your one wish for OpenApp for the year ahead?
My one wish for the year ahead would be to expand the number of organisations we are working with, to enable them to collaborate and bring value to their members. Also to build upon our existing client relationships to ensure that we continue to provide the best service possible.
If you weren’t CEO of OpenApp, what was Plan B? What did your 10-year-old self want to do as a job?
My 10 year old self was enamoured with travel and flying and I had ambitions of becoming a pilot and flying all over the world—yes a very common ambition back in the day! I’ve been lucky enough to have travelled quite a bit and to have lived abroad for many years, but the life of a pilot was not for me. With the expanse and togetherness of the rare disease community I can still experience different cultures through my work, albeit in a completely different way than my 10 year old self would have expected.
To find out more about the work of OpenApp please visit; www.openapp.ie