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Con Hennessy of OpenApp

18/9/2020

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

1.	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.

2.	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.

3.	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.

4.	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!

5.	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.

6.	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.

7.	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.

8.	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.

9.	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.

10.

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

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Daniel Lewi of The CATS Foundation

11/9/2020

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When Daniel Lewi's daughter was diagnosed with Tay-Sachs, he discovered there was no dedicated UK charity offering support to families such as his, and so along with his wife, set up The CATS Foundation. He talks to RARE Revolution about the incredible support network his organisation has created, and about their involvement in the first clinical trial; ever hopeful of finding a cure

CEO Series: meeting the beating hearts behind the RARE brands

1.	What made you want to move into the wide world of rare disease, and then specifically The CATS Foundation and what did that journey look like?

My eldest daughter Amélie was diagnosed with a rare disease called Tay-Sachs in 2011 when she was 15 months of age. At the time there was no dedicated charity in the UK or Europe providing information or support about the disease. My wife Patrícia and I started speaking with other families and although we were told at Amélie’s diagnosis that we probably wouldn’t meet another family impacted by the disease, we started to realise that this wasn’t actually the case. Research at the time was still in its infancy, but for us the main thing was that we, as a community, needed support for each other, from each other. So, we put things in place and set-up the Cure & Action for Tay-Sachs (CATS) Foundation to provide support to families affected by Tay-Sachs and Sandhoff disease (known as GM2 gangliosidosis together) in July 2011.

The journey at the beginning was very daunting, but we were lucky that we had a motivated community who wanted support and wanted to help each other. We’ve also been fortunate to be members of groups like the UK LSD Collaborative who have been instrumental in sharing best practices, advice and guidance as we have navigated the realities and challenges of running a viable charity for a rare disease. This is not only focussed on what support we can give, but help on funding and making us sustainable–this is the most important part as families will always need support. Other groups, like Findacure have really helped us with the fantastic workshops they run and the rare disease community in general is very collaborative, we are always helping each other when we can.

Daniel and his beautiful daughter, Amélie

2.

What do you anticipate will be the biggest challenges and opportunities for your organisation in the next two years?

Our biggest challenge is always going to be funding, although I think this is a concern for all small charities. We need to ensure that we are sustainable and that we can continue to do the great work of supporting people. Opportunity wise, we are fortunate that we now have an active research community who are investigating various different treatment options. This in itself will bring challenges because we have to manage expectations of our families about what these treatments can do. But, it’s an exciting place to be and when we look back at how far we have come in nine years it’s a testament to hard work and a close-knit community!

3.	What is your proudest moment in your career thus far?

The proudest moment is seeing families smiling at our family conferences. It’s the old cliché, but we do all become one big family and the genuine feelings of warmth that we have for each other always brings a tear to my eye. We have families who have lost children to the disease, have a newly diagnosed family member or they themselves suffer from Tay-Sachs and Sandhoff who attend our family conferences and it’s amazing to see everyone relax and just be themselves.
Another proud moment was the recruitment of the first trial. We have been involved in this from the very beginning and it’s remarkable to see a treatment started that we, as a community, had so much involvement in.

4.	What and who are your personal and professional inspirations and why?

Amélie and my other children Grace and Seth are a big inspiration to me. How she coped with suffering from Tay-Sachs for eight years was inspiring. She showed such determination and strength each day and was an amazing role model to her siblings. When she died, she died on her own terms peacefully at home with her mum holding her hand. It’s the worst thing to happen to you as a parent to lose a child, but we really believe she left us on her own terms.

Grace and Seth are massive drivers for us. They were always aware that Amélie was different and needed more help from us and it is truly remarkable how much empathy they both have at such a young age. Grace, who is now the age that Amélie was when she passed away, is such a force and she is constantly getting involved in the projects that we do at The CATS Foundation–it makes us so proud.

My other inspirations are the families and children we have met over almost 10 years. They are all so strong and continue to be so and we’ve made friends for life within our community.

5.	What advice would you give someone considering working in the rare disease space?

It is an all-consuming environment! It’s not just a job, it’s actually enforcing change and helping people who are, in some cases, going through the worst moments in their life. You can 100% make a difference, but you have to be willing to commit. The rewards are amazing though–the first trial we got started is one of those moments I will never forget and to know you are part of something like that really is a key driver.

6.	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?

You can never do enough for the rare disease community. Sadly, it’s up to the charities and our communities to be constantly banging the drum to get our voices heard on a local, regional and national level. My major concern is that this trend of people having to fight for a treatment option will continue and I hope that the government will step up, take responsibility and stop putting the price of someone’s life against the cost of a treatment. I find that morally wrong and it must stop.

7.	What would you say are some of the biggest motivators for your employees?

Everyone at The CATS Foundation has a personal connection to Tay-Sachs or Sandhoff disease. We have all lost a child to these awful diseases and are fully committed to doing anything to help families after a diagnosis and to drive forward the research for treatments.

8.	What are the toughest parts of being a CEO, and conversely what are the most rewarding?

As a charity CEO the toughest part of the role is handling the responsibility of an entire community. I’m fully aware that we are fighting for our children all the time and every time we lose a child it breaks my heart as it means we still don’t have that all elusive cure. It’s something that will never get easier. But each year we are getting closer and the work by doctors, researchers and pharma will, I’m confident, get us there in the near future.

For me, the most rewarding part is seeing families supporting each other. As a charity we were born out of the fact that there was no other environment where families could turn to each other and discuss the reality of the disease. By that, I mean the harsh reality. The topics like how you handle taking a doubly incontinent eight year old child out for the day, how do you manage having carers in your house, how do you juggle work, how do you function on sleep deprivation. We now have this community and I find that the biggest success. Our research has moved forward, treatments are close, but families no longer feel lonely. That to me, is a success.

9.	What would be your one wish for The CATS Foundation for the year ahead?

In the next year I’d really like us to expand our support offering so that it has a real nationwide reach. The current pandemic has restricted our ability to hold face-to-face conferences and catch ups, but I really hope that this time next year we will have had a family conference for 2021!

10.

If you weren’t CEO of The CATS Foundation, what was Plan B? What did your 10-year-old self want to do as a job?

Before I was drawn into the rare disease world my life was very different! Like many people who set-up rare disease charities we never had an intention to enter this world, but now we are here to stay and make a difference.
However, as a child, I wanted to be an archaeologist. Or, as my mum tells me I used to say, a dinosaur digger-upper!

To find out more about the work of The CATS Foundation, please visit;
www.cats-foundation.org

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Con Hennessy of OpenApp

Daniel Lewi of The CATS Foundation

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Rare Revolution is published by NRG Collective, a not-for-profit media company specialising in rare disease content
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CEO​Series

Con Hennessy of OpenApp

Daniel Lewi of The CATS Foundation

Author

Archives

Categories

Rare Revolution is published by NRG Collective, a not-for-profit media company specialising in rare disease contentContact UsEditor: editor@rarerevolutionmagazine.com​Advertising: rstewart@rarerevolutionmagazine.com

CEO
Series

Rare Revolution is published by NRG Collective, a not-for-profit media company specialising in rare disease content
Contact Us
Editor: editor@rarerevolutionmagazine.com
Advertising: rstewart@rarerevolutionmagazine.com