Health Data Management Expert | Technology Creative Leader | Health Innovation Specialist
A highly qualified information systems professional with a unique combination of skills and capabilities acquired via industry and educational experience. Possesses excellent interpersonal, managerial, emotional intelligence, and communication skills with the ability to adapt to challenging situations and prioritise tasks. Works well both independently and as part of a team, demonstrating the motivation and organisation required to meet targets, thriving in design /creative/technical environments. Key assets are strong attention to detail, critical thinking skills, and is quick to grasp new ideas, technologies and concepts, and translate same simply and concisely at different levels.
What attracted you to data management or IT, and why did you choose to pursue this career?
I suppose I was always quite inquisitive as a child and found technology fascinating vis-à-vis what it was capable of. Even though I started my career as a biochemist, I was very quickly drawn to information technology. Today, I utilize and combine both these technology fields in my day-to-day job.
Throughout my career I saw how deficient human decision-making can be, and how more often than not this was as a result of either missing or inaccurate data. The ramifications of poor data in healthcare cannot be understood, where diagnostic errors often result in misdiagnosis, incorrect and or unnecessary tests/procedures, in tandem with inappropriate/incorrect therapy regimes. With death or poor patient outcomes being the result. This in my opinion is unacceptable when remedies for such errors exist. And so, information within the diagnostic process has been a passion of mine for some time now.
What has been your greatest career accomplishment so far, and why has it been important to your career?
I feel that my greatest accomplishment is in how a key output from my PhD (a checklist to aid memory recall/information capture Cystic Fibrosis (CF) patients) has helped the lives of thousands of patients and careers, empowering them, reducing stress, improving adherence and memory recall/information capture and communication. This can be best encapsulated by one mother of a CF child who wrote to me:
“We received Your Medical Appointment Check List from CF Ireland recently. I just wanted to say a very big thank you for making my daughter’s life a little bit easier”
Moreover, the tool has made the diagnostic process for physicians that bit easier due to improved quality of data imparted to them.
What are the two or three biggest challenges you face as a data management professional / CDO and how can we address them?
Two of the most frequent issues that I come across time and time again are:
1) Lack of thought/due consideration regarding decisions and data, what I mean here is that the beginning of any decision-making initiative should start with several fundamental questions (which often are not asked or not given due consideration). For example: What do I want to know? Why do I want to know this? What will knowing this allow me do/what action will it allow me to take. How might I come to know this?
Believe me, the number of times I have encountered startups and innovators in the health space who have not given due attention around these questions is quite memorizing. Hence, I spend much of my time assisting my clients in the identification of relevant questions that they need to ask for them to make key decisions/take particular actions.
2) Not enough consideration into understanding a problem.
Fundamental to solving any problem is understanding it. Nevertheless, so many think they understand the problem and rush to deigning solution. The result, Type 3 errors, designing solutions for the wrong problem. This is a big problem in digital health solutions for patients, where designers expect patients to “shoehorn” into the solutions they created. Why, because the designers did not spend enough time with the patients to understand the problem though the patients lived experience of it.
In tandem with that we must challenge ourselves to look at a problem from different perspectives, from alternative disciplines, if we haven’t found/considered alternative viewpoints, we may well fail to understand a problem well enough, affecting the most appropriate articulation of the problem definition, and the successful design of a solution, or comprehension of why a solution functions as it does.
Going deeper in “problem formulation” will help to explain observed phenomena, highlight shortcomings in a solution, enrich problem definitions, resulting in a truly comprehensive understanding of a problem domain and the delivery of truly successful impactful solutions.
How do you see data management / the role of the CDO / IT changing in the next 2 – 3 years?
Data continues to grow, and this is especially true in healthcare, where data is growing exponentially. Not only do we need to consider the data that recedes within the traditional health system (Electronic Medical Records etc.), we must now also consider the datasets beyond, data gathered by patients’ (i.e., symptoms), wearables, apps, medical IOT devices, and so on. This data augmentation points to several key challenges for the CDO/IT that will need attention now and over the coming years:
Interoperability – currently there are far too many systems that are not able to “talk to each other” and share data, resulting in data silos. How then is a physician meant to be able to get an accurate representation of a patient’s health status? How is the physician meant to be able to make a correct diagnosis?
Analysis – we need to be able to get all data sets into one locale and use technology such as AI to gather insights, in order to make an accurate diagnosis on a patient, but also so that researchers may come to understand medical conditions and therapies better by looking at larger patient group data, enabling advancements in medicine, and of course improving patient outcomes.
Data/IT governance – of course we also need to make sure the date is secure, of high quality etc. Data governance is crucial, physicians must be confident in the quality of data they have in front of them in order to make an accurate diagnosis and recommend appropriate tests and therapies. Moreover, one of the core values in health is trust, trust in the data, trust between the patient and physician, trust in the science. Trust in our healthcare systems.
And so, data must be secure and protected from nefarious actors who would seek to exploit some for their own means. Security is and will continue to be a critical part not only of traditional health systems but also for companies selling various health devices, apps, wearables and so on. Governance will also be required around how our data is used and conversation will continue around who owns our data. Furthermore, ethics and ethical design will remain at the center of many conversations, especially as AI becomes more pervasive, we need to ensure that algorithms remove human bias and are not discriminatory as we have seen far too often of late.
Do you have any planned next steps for your career?
My real passion lies in realizing the insights (most remain hidden) /value that resides within health data. Assuming systems become interoperable and data silos are eliminated, the conversation changes to how might we use machine learning/deep learning to really advance medicine. This will start with: What do we want to know? and why? By cross pollinating datasets might we discover why certain patients become very ill with Covid whilst others remain asymptomatic? Why have certain HIV patients naturally recovered?
Hence, I think I will remain in health but hope to get closer to the data value/realization part of medicine.
What is the single best piece of advice you have received in your data management / IT career so far? Why has it been so important to you?
Enjoy life, find an area that you are curious about, that ignites your passion and follow it. Explore and be true to yourself and in what makes you tick. Then a job becomes the reason you jump out of bed, perhaps the reason that life makes more sense. Don’t be afraid to reinvent yourself, you too are an evolving entity, I have done so many times in my life.
Don’t take things at face value, stand back, take time to reflect, challenge your thinking, become self-aware regarding your own biases, become informed, enjoying assimilating knowledge, and don’t be afraid to question the status quo. Ask yourself why, why, why?
Life is for living, ask yourself what you want to be remembered for, what will your legacy be.
Once you have decided upon that get to work and make it happen….
Can you share something about yourself as a person that people wouldn’t know about you?
I lost my dear sister Jane to Cystic Fibrosis (CF) on the 29th of July 1997. The experience of her death has left an indelible mark on me, not only because of the pain of her passing but also as I have CF myself. I have also lived through the hardship that one endures with CF. I have faced the dark shadows that come into a room when gasping for breath, where one’s mortality becomes all too real.
After my sister’s death I had a choice; to let this disease define me and become a bitter, negative person who craved self-pity, or to embrace the positive aspects that the disease had carved out or sculpted into my heart and mind. You might ask what do I mean by positive? I mean the appreciation for life, for family, for fun, for being able to breathe. I mean the ability to empathise with others, to be compassionate to another people’s suffering. I wanted to make a difference, to give something back, as others have given to me, which has resulted in my own good health. I wanted to help others with CF who are travelling on their own difficult journey, a passage that has many dark and difficult days. And so, starting in 2014 this became my mission which eventually led to the above-mentioned PhD checklist which has impacted so many CF patients and caregivers.
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