If I had to be honest I was not sure what I thought would be the outcome of the Stakeholder Board Meeting for SHARP an ERS Clinical Research Collaboration. During my time as a patient involved in research I have been to many meetings, board meetings, scientific meetings and each time gone into the meeting with ideas of what might come out of the meeting. More often than not my ideas/ thoughts are:
- The patient group might get a chance to have a slot on the agenda (but if we do I bet it is at the end of the last day of talks when everyone wants to go home)
- The patient group might get to speak
- Patients might get chosen to have their questions answered
- Patients might get included in the small talk at the start and end of the meetings
- If there are discussion groups we might get included in the discussion if the chair sees the value in patient involvement
So naturally I had this slight thought although some of those thoughts were already quashed because the patient advisory group (PAG) asked for our session to be changed and it was. It was moved to the very first session after the introduction. It did mean I felt very stressed right at the start as being deputy patient chair for SHARP I was speaking in the introduction and then also in the PAG session too and then facilitating a group discussion but it all went well.
I should never have doubted it would not go well because ever since I first rejoined SHARP (I took time away from it due to my health and work) I have felt nothing but welcome and even when I took on the role of deputy patient chair I have always been made to feel part of it. No question is too silly and I have felt comfortable asking questions. I felt so comfortable that I was able to attend a meeting on the day I was discharged from hospital and everyone was so kind and appreciated the effort I went to to join. Throughout the 2 days of the meeting patients have been as much a part of it as the next person. In fact in some instances our opinions were specifically requested compared to other experiences where there has been a lot of patients present and then you hear researchers or Dr’s making assumptions about us rather than us being asked. I felt very much an equal (until the talk turned to something mathematical and that was way over my head) and my voice was just as important as any other person there.
Naturally as meetings go on you hear conversations and are sometimes included in conversations about potential ways forward in the asthma research field and medication development. This leaves you feeling really inspired and hopeful that there will be changes ahead, new projects to be involved in or to look out for but then the months go by and you hear nothing. But today as the meeting wrapped up there were groupings assigned, patients asked which groups they wanted to go too and then everyone sent on their way with the parting message that something needs to be done. Talk has to be followed up with action. This made me feel hopeful as it is different from the norm. The chairs- myself included can ensure that action is taken and it has not just been talk.
Looking back I wish other meetings had gone this way. I am not saying it was perfect as nothing can ever be perfect and we do have to improve our patient involvement but this was a really good step with how the meeting was conducted and also how it was concluded.
The part of the meeting that struck me most was when one of the chairs said how inspired she was hearing some of the comments from the patients but equally I was speaking to another PAG member and we both felt inspired by all the professionals who attended the meeting as they are dedicating their careers to try and make our lives better. To me that is inspiring. Having mutual inspiration for each other I think is a good thing and is unique to SHARP.
I plan to type up my talk that I gave on why I feel patient involvement is important and why I keep doing patient involvement in research.
I will always look back on this meeting fondly because although I have only ever met 2 of the 60+ people that attended I feel that I know most people who attended and would be able to have some sort of conversation with them if I was to see them at future events.