Giving a voice to patients
Saturday 5th October 2019
Day Two Part One After yesterday I’ve been thinking a lot about the role of patients voice in Heart Valve Voice and heart valve disease more broadly. I love my role as a patient advocate, I take it seriously and yet last night I had to pinch myself sat in the beautiful Portuguese evening as I thought you don’t often get the opportunity to give back and in such wonderful places!
Patient voices feel so important to me. Learning from shared experiences is such a vital tool. I feel like I can give people the comfort and confidence to make more informed choices based on what happened to me as well as what i have learnt through Heart Valve Voice. I also think it would have given my family great comfort to listen to someone who had experienced the treatment already, before I went through mine.
I spoke to Gianluca Lucchesse about the role of patients in the future of heart valve disease care and why they felt patients voices were important. Gianluca said the element of personal touch and care seemed invaluable to patients and clinicians. Clearly our voices are impactful for other patients and their families, but it was illuminating to hear the practical impacts patient voices had too. He also stated that regarding clinicians, it was good for their working practices to hear about why patients propose to them a particularly treatment as this sometimes differs from normal surgical decision making ie, caring responsibilities, hobbies, willingness to accept second procedures etc.
What struck me most about our conversation was the power of patient’s voice. HVV obviously understand this, but to see the rest of the community acknowledging it too was empowering. We spoke about different ways patients can get their voices heard and how Global Heart Hub will bring patients together from even further afield. You can read more here about that!
It feels to me the patient voice will be key to access, choice and confidence. Our ability to give comfort and confidence based on personal experience should be at the centre of future patient experience. As well as this, clinicians, charities and policy makers should be harnessing our voices power to drive practices, guidelines and policies forward.
I think for me, I have thought about the relationship between patient voice and patient experience. The two seem embedded within one another. My voice, as well as the voices of other patients, need to be at the forefront of the future of heart valve disease. Fundamentally, it is our voices which should inform the narrative which can help people make better, more informed and more confident choices when it comes to treatment. The future of patient choice is in the power of our voice.