The Synergist is a non-profit organisation that brings together the right people and organisations around the table, combining knowledge and experiences to provide overall strategic direction and coordination. Mark and I were asked to join with this group, working on personalised medicine, creating awareness and building the conditions for better access to targeted medicine in oncology and beyond. We would be working with the group, ‘Patient Education and Awareness’. We were delighted when Peter and Tielo felt confident for us to represent Inspire2Live.
The aim is to make personalised medicine an accessible reality for all those who could benefit from it, starting with cancer and testing, and in an ethically responsible way. Mark and I bring the patient experience to the table and work among scientists, researchers, pharmaceutical industry and patient organisations. As founder members, we are structuring a comprehensive framework, starting with cancer. We have agreed to start with patient empowerment and building a value case. It would be fantastic if Inspire2Live advocates have a story to share that we could use to highlight the significance of personalised medicine.
We do not wish to raise false expectations among the patient community, so we will start with communicating within proven clinical areas such as known cancer biomarker testing where a targeted treatment exists, known mutations, pan-cancer. Parallel to this, we will advise and help patients ask for testing as soon as they can in case there is a treatment that works for them. This will progress to emerging biomarkers. We aim to provide an adaptable toolkit for patient organisations and help with mapping the patient journey. We would provide a glossary of commonly used terms. Incidentally, various terms are used by industry to cover the same meaning and this is very confusing for the patient. We aim for a consensus of language.
It is quite daunting for a newly diagnosed patient to face the huge choice of treatment that can be offered today. Most would not know where to start. Equally, it is quite a responsibility to provide this information, knowing the difference it can make to one’s life.
We will try to identify and prioritise patient information needs. In this situation, they may have to deal with barriers. I remember the difficulties that Mark and I faced, when I was ill, trying to access the drug that actually saved my life. Most importantly, we will write a plain language introduction to personalised medicine and the complex science behind it, including the different types of testing.
There is, of course, much more and discussion from each group will be shared and discussed before the kick off Board Meeting at the end of June. The Launch of the Project is in July and we will be part of the working group looking at Branding and Identity.
This is an exciting project and we are privileged to be working with so many knowledgeable people with strong opinions. We compliment Helena Harnik and Nicholas Brooke, the Programme and Executive Directors, with their skills in bringing together these ideas.
Barbara and Mark Moss
Patient Advocates Inspire2Live