For the past 5/6 years I have been given some fantastic opportunities and invited to be part of a number of very special events and a few events which are still to come.
Yesterday was one of those events.
Rewind 6 years and I would never even have thought I would be at ease public speaking let alone sitting in a room with a selection of people from big pharma companies listening to me speak about involving patients across the value chain working in partnership and not in a hierarchy.
It was thanks to one of the Scotland lacrosse team who suggested me to attend the event. It was a pan European forum for Patient Centred Pharma. A totally new challenge for me. I have for a few years now worked with Astra Zeneca and their patient partnership program but this was a number of different pharmaceutical companies together in one room to discuss and share their views of what works, what doesn’t work and the challenges they have faced. Myself and another patient advocate who refers to herself as an independent advisor when it comes to patient advocacy and engagement (I have borrowed the term independent advisor for myself due to the number of different groups I am part of) were invited to speak about our thoughts on patient involvement and insights.
The day before the meeting I travelled to London. It was great as I travelled by train and in first class. It made the journey so much more comfortable to have some leg room and space along with the complimentary drinks, snacks and meal. Once in London we had a dinner before the meeting the next day. I would really recommend this to anyone who is holding an event that you will have patient representatives at as it really put me at ease and get to know the people who would be present at the meeting. Not only did the dinner break the ice but it was phenomenal. In the most amazing restaurant right on the River Thames followed by a night in an equally fantastic night in the most luxury hotel I have ever been in. The LaLit hotel was out of this world. Gadgets galore int he room, so much so I struggled to work the phone. I gave myself a fright with the heated toilet seat but also a toilet with a variety of different buttons to self clean, deodorise and so much more. It was very apt that the room number I had was 007 as Bond was known for his gadgets!!! Enough about the hotel and more on the meeting.
Again a venue looking out onto the River Thames with Tower Bridge, the Tower of London and London Bridge as my view for the day it was hard to concentrate at first but once down to business I was able to focus on the job at hand. Once myself and the other patient representative had spoken about the value we feel we bring and how we can aid pharma companies business and enrich their products and knowledge it was mainly round table discussion from the various companies and how they develop their patient centricity. It was a range of those new to patient centricity and partnership to those who have it well established and embedded in their company and strategies.
As with any of these type of events I was nervous to begin with and had to take a deep breath and take the leap to voice my thought or opinion. Participating in the discussion is very different from giving a talk. When giving a talk it is your talk, your knowledge and your time. In discussion it is more about challenging and responding to other peoples comments or statements which you may or may not agree with. What you say may be challenged and you need to justify your belief.
One part of this which I find hard to get my head round I guess and that is the money aspect of it. To me I am the patient and want to see the new treatments developed. It is as simple as that. I don’t need to worry about the financial side of it, that is up to the National Institute of Clinical Excellence (NICE) or the Scottish Medicines Consortium (SMC), they decide what costs too much and what would be of most use. In pharma it is a business, they need to make money to continue operating. They need to be able to justify costs and show where value is and what is of value to them. They also need to look for profit. As a patient I feel conflicted because I don’t care about profit. Part of me thinks they are looking for profit off the back of people being ill but then they are a business and how can they move forward as we move towards precision medicine being the norm rather than more generic medications to treat a group of symptoms rather than the cause.
A very different experience from anything I have done before. The people who attended were fascinating to speak to and find out where their drive for patient centricity comes from. I really hope they all found it helpful having patient representatives present and able to speak to us. Healthcare culture is changing and it is such a different relationship from what once was the patient did as the Dr said, it is more of a 2 way conversation and discussion about a treatment plan and what would be the pros and cons. It is a very exciting time and I hope I can continue working in this area of healthcare and industry in the future.