Sunday, 10 March 2013

4th MS Research Day Feedback

Headline results:







"These headline results indicate that we must be doing something right! Thank you!"

"We would like to thank Bayer-Healthcare, Biogen-Idec, Genzyme, Merck-Serono, Novartis and Roche for their generous unrestricted educational grants that were used to host the day. Unrestricted, in this context, means that the companies played no part in the organisation of the day or the content we presented."

Detailed feedback:



Comments to improve next year's research day:
  1. Try to make sure that there are better signs to each room. You want signs that people see and interest them. Details were in the program but you want something to be more obvious. 
  2. Too much on at once, but maybe that's me being a bit greedy. 
  3. The format duration and content seem about right to me. 
  4. The decisions on what to attend, and what to miss are very hard. Perhaps some advance warning might help us to plan the day or a chance to see the talks online? But it was as good as all the previous ones. 
  5. The day was a very positive experience. The presentations were made easier to understand and interesting enough to keep the attendees interested and following on what's new and where research on MS were going. Thank you for all your hard work and for making the day an interesting one. 
  6. That the agenda/ running order should be sent out prior to the event. This was done in previous years, people want to know what is going to be discussed! 
  7. Talk were perfect length and pitched at the right level. More frequent breaks in between talks would be good? The venue wasn't very accessible. It would be great if the next one was! 
  8. Spring a bit better time when slightly warmer (I hope!!). 
  9. Seating areas at lunchtime:-). 
  10. Revert to last years practice of answering most questions outside of the main hall.
  11. Really difficult to say. I would've like to have attended some of the non-presentation sessions but that didn't seem possible with the scheduling as it was - I think, but am not sure. 
  12. Please use a location in Tower Hamlets. 
  13. Please keep doing it! 
  14. Please do them more than once a year. Please give us direct access like this to consultants and scientists much more often. It's really hard to MS patients to see and speak to their consultant and it shouldn't be. The scientists are brilliant - they have so much information and experience and patients/families/friends are looking for this information - please do this more often. It's brilliant. 
  15. Please continue, I appreciate the effort and cost but it really does provide help for people like myself. 
  16. Please avoid parallel sessions, as both of them would be interesting. Maybe the day could be slightly extended. 
  17. Perhaps a session on how research impacts actual cases of MS maybe via a few patient histories? 
  18. Perfect. 
  19. Not so many good and interesting presentations/discussions on at the same time on the same day. More missed than attended. 
  20. Not really - just keep us informed of continuing research into MS. Thank you 
  21. None that I can think of, I personally had a very positive experience and have recommended it to others. 
  22. No, just keeping the emphasis on the latest research results. 
  23. Neuropsychiatric aspects. 
  24. My problem is being torn between talks &the other things which are in the different rooms. I have always sat through all the talks and never gone to the other rooms. I would like to go to the other rooms but the main reason I go is the talks and I would feel very rude leaving/arriving part way through a talk. 
  25. More tables and chairs for lunchtime. Hope the tube is working properly next year.
  26. More seating for lunch! 
  27. More of same please. 
  28. More emphasis on current psychosocial research. 
  29. Maybe one less lecture. I would have liked to spend some 1x1 time but also wanted to see all the lectures. Maybe you could remind people early on that these will be repeated on the web. 
  30. Maybe do half the itinery and run it twice a year. 
  31. Lunch lay out was poor for those in wheelchairs - not enough helpers or tables plus an odd menu Otherwise the day was really good - will be back next year! 
  32. Longer time at the end of the day so that people can speak with the professionals as they are always in demand! 
  33. Less presentations in favour of one or more with more depth. 
  34. Keep on the good work. well done! 
  35. It might be better to start a bit earlier and then have a short, 30 min, break so that you could attend the other venues. Also it´s hard to stay concentrated all the time. 
  36. Is there any work on nutrition in relation to MS? Also perhaps an explanation of the effect of stress on exacerbation of disease. 
  37. If the day was slightly longer but broken into three parts (so maybe a longer morning with a tea/coffee break and a later lunch), it would give people a bit more of a chance to go between the presentations and the lifestyle discussions/Let's Talk about the Brain discussions. It felt a bit rushed this time because there was so much to fit in! 
  38. If possible have patients talk about their experiences about the medication/drug being mentioned. 
  39. I'd like to hear results from the siblings trial and to retain this year's interest in primary progressive MS. 
  40. I would be very interested in research that is related to diet and other interventions that people with MS may feel helpful but the evidence might not be at RCT level. i.e. research that is less drug orientated. 
  41. I think the question time at the end of each talk has been better organized in the past. If people have particular issues they could perhaps be asked to speak to one of the presenters privately afterwards. It would give more time for general questions that are of interest to everyone. Perhaps the Prof or someone with similar authority could be on the platform while the questions are being asked to regulate things a bit. 
  42. I felt too split between excellent but short talks in the main hall and wanting to chat to the Experts in the side rooms. How lucky we are to have such excellence free and grateful thanks to those who gave up their Saturday. 
  43. I am happy with the research day I think that it should carry on as it allows me to understand more about the research that is being done. 
  44. Hold it in a more central part of the UK and ask the Researches to travel, as this would present less problems than people with MS. 
  45. Having a coffee break in the morning and/or afternoon as many of us wanted a break but couldn't bear to leave the room as we'd miss a great talk. Perhaps 3 sessions over the day with two breaks, one of which is lunch. 
  46. Have more fun stuff! 
  47. handouts that are optional to pick up ( I'm crap with computers and just old fashioned). Always update us fully on all the drugs coming up and trials. 
  48. Given each MS research day has been better than the last I would hesitate to make suggestions on what is clearly a winning formula. 
  49. Format of the day needs to be reconsidered as people with MS get very tired. Lectures in the morning. Discussions with researchers, one lecture and wrap up in the afternoon. Two sessions a year to cover all the topics. More seating in the dining hall so that people can sit down to eat. Especially people with MS. Best research day compared to others I have attended. It gets better each year. Well done to all the team. 
  50. Excellent organisation. Everyone was very helpful. 
  51. Don't stop sending invites re research days and events. 
  52. Could you possible mention to single issue groups that SOME questions are interesting, but dominating the proceedings detracts from both the purpose of the day and their cause. 
  53. Could do with some information sheets on each subject to refresh memory of content of each subject. 
  54. Be tougher with people asking questions; limit them to only one at a time, some people took the opportunity to carry on a conversation with the presenter! 
  55. Ban men with pony tails ! Allow only one question per audience member to each speaker. 
  56. Access seemed difficult for some MS suffers in Wheelchairs. Overall I learned lots and enjoyed the discussion 
  57. A venue with comparable plus points in north east east or more central London great. 
  58. A different venue. Better seating arrangements for people in wheelchairs or motorised scooters. More seating in the dining area. Maybe questions could be handled better. 
  59. A bit more on the causes and understanding cognition - particularly how best to cope as a carer. 
  60. "Handouts" are vital for someone like me who is there representing a large number of MS sufferers who are our members.