Second up in our brand new CEO Series is OPEN Health co-founder and COO, Sandy Royden. Sandy shares how she has been guiding the brands growth in the rare disease space and her aspirations for the future.
CEO Series: meeting the beating heart behind the RARE brands
What made you want to move into the wide world of rare disease, and then specifically OPEN Health, and what did that journey look like?
Given my pharmacy background, I have always been interested in the pathophysiology of disease. Rare Diseases therefore fascinate me – as they ’fall outside of the norm’ in terms of common ailments and conditions. I strive to understand their genetic links or inherent causes, and then thrive on the opportunity to help communicate and explain this to a wider audience – HCPs, patients, family and carers. Being able to rationally explain a disease and potential treatment options, particularly in the rare disease space where their population rarely get any support, is hugely gratifying. This personal interest is also reflected across OPEN Health, where there are a number of like-minded people with similar interests. In particular, our director of rare disease, Gavin Jones, does a great job of really understanding the impact of a rare disease from a patient’s perspective, and communicating this across our business, so that we all share the same empathy, passion, and desire to have a positive impact on the treatment of these conditions.
What do you anticipate will be the biggest challenges and opportunities for your organisation in the next two years?
From a rare disease perspective, I think it is a case of constantly challenging ourselves to find innovative ways of supporting our customers. The landscape is rapidly evolving with significantly different ways of treating patients very much on the near horizon. You just have to look at the imminent introduction of gene therapies to see that healthcare communications and value recognition need to rapidly evolve. I think it is exciting that rare disease could be seen as the platform to promote new relationships between the varying stakeholders in healthcare including patients and their advocacy groups. We would like to be seen at the forefront of this new world and are busy working to create solutions to support improved communications and outcomes both now and long into the future.
What is your proudest moment in your career thus far?
My proudest moments are when you actually hear about ‘real’ patients who have benefitted from the treatments we have worked on. At the end of the day our goal is to ensure stakeholders are educated on relevant aspects, across a variety of different diseases and specific treatments, and that by effective communication initiatives we can optimise patient access to medicines.
What and who are your personal and professional inspirations and why?
I take personal inspiration from Audrey Hepburn – there was nothing she couldn’t do - she was a humanitarian, dancer, actress and member of the Dutch resistance. What I take from her is ‘endless optimism’ –‘Nothing is impossible’ – in fact the word itself says I’m possible! From a professional perspective, with pharmacy at my core, I want to ensure we drive patient access to new and innovative medicines and technologies.
What advice would you give someone considering working in the rare disease space?
Whatever role you are considering playing in the rare disease community I would say go for it! It is very fulfilling to work in this field and supporting improved outcomes where there is significant unmet need. You will experience a close connection while making a difference for rare disease patients and their families. Whatever role you are in, my advice is that you develop a clear mantra in what you are trying to achieve and the benefit this will have within the rare disease community. By living and breathing this mission you will find that your voice will more likely be heard and you can have a greater impact.
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 one of the most concerning gaps is the challenge of gaining appropriate funding for the use of medicines and therapies in rare disease. Given the numerous emerging new treatments and technologies there is rightfully a lot of hope within the rare disease community. However, these medicines will often come with a high price tag and their value to health systems may not be realised for some time after they are introduced and initially used by patients. This combined with health technology appraisals that are not best suited to assess value in rare disease and we have an issue. This is playing out at the moment with a number of high-profile cases not gaining approval for use in various health systems. We need to have more open dialogue across the different stakeholder groups in rare disease so we can ensure equitable access to the most effective treatments for patients.
What would you say are some of the biggest motivators for your employees?
I believe our culture is something that is incredibly important to our employees. We have a very diverse range of capabilities within our business and with that come wide ranging skill sets and personalities. Collaboration is so important to us in enabling people to positively work together in supporting improved outcomes for our customers and the patients they are striving to serve. Everyone in our business, from our creative directors to our admin staff, recognises that they all play a part in improving healthcare for patients which in turn motivates all of us to make every effort in making a difference.
What are the toughest parts of being a CEO, and conversely what are the most rewarding?
Being a CEO can be extremely rewarding - particularly seeing and supporting people within our organisation to grow, develop and achieve their personal and professional aspirations. But alongside that comes some of the tough decisions – reducing resources and cutting your cloth during the challenging times.
What would be your one wish for OPEN Health for the year ahead?
I would love to see OPEN Health continue to grow and further enhance our reputation in the rare diseases space. I want us to be able to deliver truly innovative programmes that have a measurable and positive impact on patients’ lives.
If you weren’t CEO of OPEN Health what was Plan B? What did your 10-year-old-self want to do as a job?
I always wanted to be a pharmacist, and once qualified and more experienced in the various career opportunities. I sought out a clear path through marketing and healthcare communications. To be honest, if I had failed to achieve the grades to study for pharmacy, I was going to have a total career change and study hotel catering and management………who knows where that would have taken me!
To find out more about the work of OPEN Health please visit www.openhealthgroup.com