Jamie O'Hara founded HCD Economics to combine his career ambitions with his passion for advocacy. He talks to RARE Revolution about the importance of evidence based advocacy in ensuring all rare disease patients have access to the appropriate healthcare, and his drive to establish equity in the healthcare system
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 HCD Economics and what did that journey look like?
My professional background is in life sciences and health economics. Early on in my career I worked on economic evaluations in areas such as diabetes, rheumatoid arthritis and psoriasis. Looking into the pipelines and evidence generation for haemophilia, it quickly became apparent that the real-world insight into the burden and unmet need was poorly studied and quantified and there was very important work to be done in haemophilia and also in other rare diseases. Consequently, evidence-based advocacy for access to improved medical care in rare diseases required focus and investment.
I am also a severe haemophilia A patient, and am committed to evidence-based advocacy, specifically in support of access to medicines and healthcare provision for patients, like me, who have rare diseases. I set up HCD Economics, eight years ago, so I could dedicate my career ambitions with my advocacy ambitions. We have grown to be a multi-disciplinary Real-World Evidence (RWE) team of 36 excellent colleagues, working across a number of rare diseases, engaged in dozens of types of RWE research and consultancy assignments.
Jamie O’Hara delivering a presentation at the world federation of haemophilia conference in 2018
What do you anticipate will be the biggest challenges and opportunities for your organisation in the next two years?
I am passionate to have the opportunity to be involved in establishing equitable healthcare access. A large part of the cost to our healthcare systems is born out of failed public health policy and in many cases moral hazard. There is a real opportunity to reassert the difference between equity and equality. All too often rare disease patients are denied appropriate access to health resources due to the confusion between the two concepts. The challenge is that budgets supporting evidence-based advocacy in the rare disease space will be further constrained moving forward, there is a real risk that rare diseases patients could suffer.
Equality and Equity often get confused, but you can see they are actually two very different things. Photo: Interaction Institute for Social Change | Artist: Angus Maguire interactioninstitute.org and madewithangus.com
What is your proudest moment in your career thus far?
Aside from this interview… I have enjoyed watching HCD Economics grow, and mentoring staff members who often come to us as graduates, to develop and grow into balanced and respected senior consultants who are able to lead on complex projects and support the communities in which we work.
What and who are your personal and professional inspirations and why?
Personal inspiration: my wife and children who have been very supportive during what has been an intense period of development and growth of HCD Economics. Professional inspiration: I’ve had the pleasure of working with many top-level professionals, from whom I always try to learn to develop a composite of professional principles. These include lecturers from university, previous managers, and patient community leaders and of course the great team I work with day to day at HCD (and Steven Gerrard).
What advice would you give someone considering working in the rare disease space?
Understand that this area works differently from more common diseases, there just isn’t the same evidence and knowledge via the same conventional pathways in rare disease
To properly serve the rare disease communities there needs to be a much more targeted approach to fully understand the complexities of each individual rare disease
Take a more pragmatic approach to truly understand the unmet need and burden of a rare disease as conventional research approaches may leave the story only half told.
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?
It’s clear that for many therapy areas things have improved, however there is still evidently room for improvement. Health Technology Assessment (HTA)—which is the main point of access into a system for drugs to be accessed by patients, is currently a very rigid framework that doesn’t necessarily fit alongside rare disease complexities. Often rare diseases are life-long which can result in the emergence of a disability paradox. In effect patients and caregivers don’t know of a different reality and are unable to give an objective assessment on the impact of the condition. This is a problem particularly in the UK where we use Quality Adjusted Life Years (QALYs) which can significantly undervalue the benefit of an intervention because of the described paradox. It would be great to see initiatives that more explicitly utilise Multiple-criteria decision analysis (MCDA) to incorporate rarity/equity paradox.
Jamie O’Hara presenting to patients at the Haemophilia Society conference in 2019, explaining about the disability paradox—the concept that patients with haemophilia perceive their quality of life to be better than externally is it
What would you say are some of the biggest motivators for your employees?
Aside from the monthly pay check…. Working in a research consultancy and having a close relationship with many charities/patient advocacy groups makes the job emotionally as well as professionally rewarding. Each colleague gets to see up close, the impact our research has on these underserved communities. The technical challenge and the workload are intellectually stimulating (Burden of Illness, time trade off methodology, various technical analysis, discrete choice experiments etc).
What are the toughest parts of being a CEO, and conversely what are the most rewarding?
It never stops but I wouldn’t have it any other way. The team and the collaborators (University of Chester, Patient representatives and clients), have been based on fun productive solid relationships, as in any business nothing is perfectly smooth, but for the best part it’s a lot of fun and I’ve made many friends along the way.
What would be your one wish for HCD Economics for the year ahead?
For all the staff to be able to get together before the end of the year and enjoy one of our team building days, a nice activity and a curry and beer afterwards.
HCD Economics team on a white water rafting away day
HCD Economics team enjoying a team building afternoon in the North Wales countryside
If you weren’t CEO of HCD Economics, what was Plan B? What did your 10-year-old self-want to do as a job?
The plan B was to be a university professor in economics and my 10-year-old self-wanted to be a footballer at Liverpool Football Club.