There is an increasing desire in the research community (public and private) to include patients throughout the medicines development process. This involves a big change is the way these organisations interact with us. It is a challenge, as working with the public and patients often requires a different way of preparing for and organising of meetings. Sometimes, the public/patients have not used the tools the company uses, or are capable of doing things which healthy people find so easy, they don’t even realise people with disability could find very difficult.
On Wednesday, I attended a meeting with a pharmaceutical company. It was the second meeting I attended with them. The first one was difficult for me, for several reasons, and the meeting this week was a disaster. It was 4 hours, but I could only last for an hour and 15 minutes. The format was wrong for me. After the meeting, I sent an e-mail to them outlining the challenges for me. This is what I sent.
The E-Mail I sent the Company
Since 2017, I have been at many meetings, both face-to-face and online, and the meeting I attended yesterday was one of the worst. These are my observations and I have to be blunt, as your actions caused me pain.
- The group size was too big if you want everyone to participate
- The participants were not comfortable using Miro
- There was no need to first let people find themselves on the Miro board, then to find their campsite, and then go to a group.
- The e-mail with the pre-reads did not indicate we should select 5 most important of the topics.
- The moderator/organiser was not prepared for issues, and could not manage the meeting.
- We were asked to attend 5-10 minutes before the start, I thought to have an informal chat, and say hello. Not to listen to music.
- Two 10-minute breaks over four hours is not enough.
The Impact on me
- I really dislike music as it is a trigger for my pain.
- I had to have two windows open on my computer, one for Miro and the other for Microsoft Teams. Fortunately, I have two screens, but I had to keep switching from one to the other. This was disorienting.
- Time was wasted training us on how to use Miro.
- Too many people speaking at once. This was very difficult for me as I cannot separate voices, so I had to really concentrate to hear anyone. The deeper I have to concentrate, the less time I have available.
- The facilitator was speaking too fast, walking all around his office/home, and demanding who was speaking. If he was in front of a screen, he would be able to see who was speaking. His continual movement was very distracting for me.
- The process of finding where we were on the Miro board, and then moving to a campsite and then to a group were completely unnecessary steps. Our time is precious. I have a ten hours a week to contribute and I lost an hour in that process.
- If we could have voted on the 5 top topics before the meeting, we could have been allocated to our groups at the start of the meeting. An hour was lost voting and finding our groups.
- It is impossible for me to concentrate on reading something if there is other movement on the screen. Having 20+ arrows buzzing around made it extremely difficult to read, let alone comprehend, the idea’s on the Miro Board.
- By the time we got to our groups, one hour into the meeting, my headache had reached a pain level of 7 on a 10 point scale.
- I left the meeting after 1.25 hours, had something to eat, and then went to bed for the rest of the day. Today I am still feeling the effects of the meeting.
- My opinion of the Company’s ability to actually engage with patients has dropped significantly. It seem’s to me the meetings are conducted to suit the needs (organisational) of the hosts, not the attendee’s.
- Patients time is precious, do not waste it.
- Just because a tool has a function it isn’t necessary to use it. Only use the function if it will save time, energy or cost.
- Use the communication before the meeting to be clear about what will happen and when. Try to use the pre-reads to save time in the meeting.
- The length of the meeting was too long, it should be increased to two or three meetings of shorter length, and with more focus.
- We should have been put in our breakout rooms from the start, or at least in the first 10 minutes.
- The 10 minutes before the meeting should have been left for a chat. There was a conversation happening when you decided to play some music.
- The meeting should be in a format suited to the attendee’s. Many patients have fatigue, pain & concentration/cognitive symptoms, so we need a different format if we are to give you the full benefit of our experience.
- The Company needs to listen to patients, not tell us what you think we want. We are capable and have extensive knowledge, but you will never hear it if you insist on doing things the way it suits you.
I hope that what I have written today will change how you interact with patients. We are not healthy like you and we have many different needs, which must be accommodated. If you do not adapt, you will fail with this idea of using [patients] as a catalyst for improved research, leading to improved quality of life of the patients who purchase your medicine. It will just be another gallery of posters, statues, and quaint quotes to make you feel good, not us.
We all make mistakes. This is normal, but if we don’t learn from these, we shall continue to fail. My hope is this company, and by me sharing this here, other organisations, can learn what these errors are, and most importantly, learn how to avoid them.
I have experienced excellent example, the primary one being my work on the COB-MS trial. Perhaps I have been spoiled, as when I talk with Patient Advocates who have been working in this role for decades, my experience last week was usual. Perhaps this company is the exception, but it cannot continue, if they want to enhance their offering to patients worldwide.
Over the next few weeks, I hope to learn more about why this happened. It is also a hope that they will learn and change. This will need support throughout the organisation, especially from the senior management. Without their support, nothing will change.
If they take this opportunity to critique their way of interacting with patients, and make substantial change, they will reap the rewards. The treasure contained within the many patients who want to help them, it will improve the quality of their products, reduce waste and unnecessary cost, and ultimately improve the quality of life of their customers.
That is a goal worth achieving!