How Himss made sense

How HIMSS made sense to me

At HIMSS Europe 2022 two parts of me, previously quite separate, converged. Throughout my working life I have drawn a line between personal and career. Eli, 21 years old, my eldest, is severely disabled.

There was a time when talking about Eli would just make me cry. That is rare now but even when relevant I still tend to be cautious about including our experiences in work discussions.

This time was different. In fact, I was invited to talk about our journey with Eli in the opening keynote I moderated. I am pity averse and it felt particularly good to talk about Eli in front of such a pragmatic can-do crowd. HIMSS brings together healthcare and IT leaders. Its stated mission is to 'Reform the global health ecosystem through the power of information and technology.' Its vision : 'To realize the full health potential of every human, everywhere.'

As the mum of a heavily disabled kid, you can see the appeal!

Eli has drug resistant epilepsy, sometimes daily seizures, acute learning difficulties and autism. Together we battle a system that often seems to work against us. This fight has taken us from London to Lyon in France in search of better health and care. Aged 14 Eli had no school to go to. We co-founded a charity and a specialised school for kids and young adults with autism. Thanks to that, I have learned to talk more easily about our experiences. I am so proud of what Eli has achieved as well as the kids and families we have lent a hand to too along the way.

As the dust settles on the summit, I am still buzzing with the energy and optimism that pulsated through the gathering. A new sense of collaboration and determination appears to be one of the positives of the Covid pandemic. It feels like we are on the cusp of something big with the potential to to improve health outcomes across the board, including for Eli.

However, the onus of responsibility bears heavily on the decision makers, innovators and IT specialists at the conference. There appears to be a brief window to get things right, not only in terms of driving a digital transformation in health, but also ensuring the wave brings everyone with it. My invitation to talk, as well as the other patients and carers speaking, served as poignant reminder to the leaders at the conference. The spiral of exclusion must be broken, the spirit of inclusion has to move from words and be indelibly imprinted into ALL action.

The conversations I had in Helsinki, the people I met, the panels I chaired, helped restore a trust in the healthcare community that has eroded over the years. They also re-ignited hope, that maybe, just maybe, a digital transformation in health might offer new unimagined solutions, to the vulnerable and excluded. To people like Eli.

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