Some of you will know about my blood clot history. Potted version – a larger-than-should-be-fair deep vein thrombosis after having a baby in 2008, unsuccessful vein bypass surgery in 2010, a stupid and unexpected clot in 2016, a few other clots here and there until TA-DA I’m fixed by venous stents in 2018.
Whilst the whole clot thing is literally a complete pain, I’ve been enormously lucky to be able to use the experience in a positive way after years of it being pretty horrid. I’ve now been involved in various activities as a patient advocate for a while, including being part of an International Consortium for Health Outcomes Measurement (ICHOM) working group to develop a standard set of patient-centred outcome measures for Venous Thromboembolism (VTE).
The experience of this has been fascinating, partly as a patient, partly as a health psych and partly as an impact person. In a nutshell, the process has involved a series of meetings over a number of months, where clinical experts in VTE and a number of patients living with venous conditions review, assess and vote on what outcomes “matter most to people (≥16 years old) with Pulmonary Embolism, Deep Vein Thrombosis, and other related conditions“. The first thing that struck throughout this was the equal weighting with which my voice as a patient was included in decision making. The ICHOM team and the clinicians involved really did try to ensure the patient voice was brought to the fore in all conversations. The second thing was the way the process effectively combined rigour with democracy, giving open platforms to discuss issues which were subsequently fed into group wide votes. Thirdly, whilst I can’t pretend to have always understood the clinical terminology, care was taken to clarify in the meetings or offer additional discussions to explain things further. I know I have an advantage as a patient already being ‘in health and research’ as it were, but that notwithstanding at no point did I feel my inclusion was tokenistic, rushed or glossed over. Quite the opposite.
The final ICHOM VTE outcome set has now been publicly launched and is free to access. It includes measures across four categories – Patient-reported outcomes, long term consequences of disease, complications and treatment related complications – covering the experiences of care, with what it’s like to live with venous conditions. The site provides a series of support materials, such as reference guides, and is a new contribution to the existing set of 40 (and growing) outcome measure sets for other conditions.
My hope is that this work will herald a new way of supporting patients with VTE, combining clinical excellence with patient experiences. Venous disorders can absolutely wipe quality of life from under your feet, but with a more values-led, comprehensive and standardised set of measures, over time we might just be able to make life a bit better. I’m enormously proud to have been part of this, and my huge and personal thanks go to the Chairs – F.A. (Erik) Klok (Leiden University Medical Center) and Stephen Black (King’s College London), the ICHOM project team and the working group members who worked so hard to get this right for VTE patients across the world.