Stakeholder Feedback and Comments

Meeting #1 presentation (PPT #1)

  • The website looks great and the project is structured to bring focus to some very important issues! Thank you for your work and for including me in this effort.           
  • The background information that was provided on the website was extremely helpful to clarify the goal of this study.

PPT #1: Project's website

  • I think that your Powerpoint presentation/introduction to the project is very comprehensive and understandable. I'm happy to be part of your CAB for this project.                     
  • The PowerPoint presentation was well written.  I think there is some additional benefit to be gained by interaction between the presenter and audience.                   
  • There was a lot of information to digest. Would be good to send members a reminder as to where they can find the information on the website and maybe have a condensed version/summary available for them to go back to.             
  • I think sharing the study goals at a higher granularity by Dr. Talebizadeh with collaborators would be helpful initiating discussion for future sessions.    

Memorandum of Agreement (MOA)  

  • I viewed the MOA online.  I should have printed a copy.  My recollection is the MOA did not require my signature.   

PPT #1: Suggested structure for the meetings      

  • My only concern is that I don't understand how I will provide better input back to the team. Will there be an opportunity for a discussion of the topics? A conference call or GoToMeeting?        
  • Regards to having collaborators on this sturdy from different time zones and schedules, I think PowerPoint presentations are very useful and convenient. 

PPT #1: Selection of topics to be covered during the course of this project           

  • I think less reliance on electronic mail and PowerPoint presentation and more personal interaction would be helpful.            
  • Could also consider adding a topic of barriers to obtaining genetic information (i.e. in clinical practice I frequently have parents who want to do genetic testing but have trouble obtaining prior authorization from insurance companies to cover testing which is often quite expensive). Additionally, physicians have little if any training on how to identify appropriate testing and how to identify resources to facilitate ordering genetic testing.
  • I agree, but I think this agenda should not be fixed yet and it is key that we obtain buy-in and additional input from CAB members and prioritize the topics to be covered.    

PPT #1: Overall comments/suggestions

  • I look forward to this.
  • I think that this PCORI initiative has been well-thought out and has a high probability of producing valuable information regarding patient input into the availability/use of genetic data.
  • The project appears clear. I think you have a good number of stakeholders.
  • What a blessing it is that our paths have crossed.  I have a TREMENDOUS interest in this area and I couldn't agree more with your proposed study. I am sincerely looking forward to working with you and the team on this project.
  • The materials are very well thought and nicely written with appropriate contents.
  • This is great, I am sorry I was slow!
  • Really fabulous materials!! You are doing a great job!
  • Thank you for making it easy to contribute to this amazing effort!
  • I would consider providing patients/families with the resources that they can learn about the disease condition and related risk factors or in general raising awareness related to genetic diseases and risk factors is as a prerequisite. Patients and families can help this study by sharing a list of questions they have about the condition, their concerns and worries, related to possible prevention or treatment protocols and so on. Thank you!
  • Thanks for including me.

Meeting #2: presentation (PPT#2)  
  • I thought it was good, the slides were well-laid out and easy to follow and very comprehensive!
  • I think an earnest effort was made to impart the information in a manner that was easy to understand.  Unfortunately, for those of us who lack a scientific background, understanding genes and genetic structure was a daunting task.  I think my difficulty had more to do with the subject matter than the presentation.                                         
  • Needs a bit of framing to understand the context and perspective of this information                                                           
PPT #2: Information about the concept of genetics      
  • The genetics was wonderfully presented and could be easily understood by a patient with no background in genetics.                                        
  • Same comment as above.                                       
  • Not really the focus of this and several stories were not clearly attributable to genetics - which is ok                                           
  • All info is in secondary resources.     
PPT #2: Information about the Precision Medicine Initiative (PMI)   
  • It was easy for me but not sure about the general population without scientific and medical knowledge                                           
  • I felt like my understanding of Precision Medicine Initiative was better than my understanding of genetics.                                           
  • Not the focus of these anecdotes, i don't think.                       
  • I would not assume that everyone knows what the Precision Medicine Initiative is.

PPT #2: Patient stories     
  • It looks great!  I am also interested in the stories of the other patients. I also wanted to say that I very much appreciate what you are doing to try to help all these people like me and my family.  Thank you again                                           
  • Very moving stories                                           
  • I think the patient personal stories were helpful.                       
  • They are very impactful stories, just not sure what the 'message' was.           
  • I liked the patient stories.                                         
  • Very compelling                                           
  • Great stories! Love the 23andme one, very interesting

PPT #2: Project website
  • Project website is very well designed and presents the information in a straightforward helpful way.                                           
  • This study is well organized.  The subject matter is difficult for this respondent but presented in a manner that was easier to understand.                             
  • The personal stories were incredibly touching and serve as a great reminder of why this work is so important for current and future generations.                       
  • I think having as many videos with transcripts of what the person said (in case a video dose not work) allows makes for a more interactive website. "Teasers" such as 'Why my child's cancer treatment didn't work' might be better than 'Click this video'.                   
  • The patient stories were excellent and illustrated in a concrete way exactly what people hope to get - and often don't get - from genetic testing and precision medicine today.               
PPT #2: Overall suggestions/comments       
  • Is there a schedule that breaks down what each of the study presentations will cover? I just see the number, but not the subject/goals of the presentations on the calendar.            
  • Happy to see increasing engagement and interest in this topic               
  • The information presented, particularly about the output of 23andMe was very helpful.  It's also good to know about other people's experiences in dealing with complex disorders.       
  • Nice selection of information (videos, reading material, websites, etc) and patient stories to provide a nice learning experience.                               
  • Thanks for the explanations and links, very helpful in understanding the 'big picture' of what this project is trying to do.                                           
  • I enjoyed learning about this slide series.                                                                                       
Meeting #3: presentation (PPT#3)

  • I wanted to tell you personally what a great job you did on the PPT#3 presentation.  It was so professionally organized and all the stories were very compelling.                                 
  • It was a little more challenging than previous presentations due to the more technical research study descriptions.                                        
  • I felt it was quite over my head.                                        
  • Some of the research details get dense.                                        
  • Very comprehensive summaries
PPT#3-Patient stories

  • Really enjoyed Kelly Ranallo's video.                                       
  • I appreciated the links for the videos.                                       
  • These stories were very interesting.  However, if our group had more non-health professionals, I think some of the information would have been fairly difficult to understand.                               
  • I was unsuccessful after multiple attempts to open Kelly's YouTube video.
  • Stories really helped frame the information.  
PPT#3-Examples of published epidemiological/patient outcomes studies     

  • I'm not sure how you could improve this area.  It's complex.                                       
  • Again, very informative, but not as easy to understand.  Hard to evaluate this question effectively and question #2 since you are asking two (more than one) evaluations.                        
  • Again, as a non-medical person, I felt they were a little technical.                                       
  • A better way to convey the messages might be to use visuals instead of text.                               
  • Not clear the strength of correlation.                                       
  • Very informative                          
  • Attempted to click the links to access references, but was unable.                                       
  • Tables were very clear and concise.   
PPT#3-Examples of genetic research done by our CAB members (Scientists)

  • I really like the CAB profiles!!
  • Fascinated by the sleep/synapse connection.
  • Since I do not work daily with genetic data, it took me some time to understand it.
  • Some of the genetics research is hard to understand.
  • Studies are very exciting.   
PPT#3-Project website

  • Website looks great.  
  • Great job in putting together a very informative presentation on person experiences involving personalized medicine.
  • Keep adding stuff. It’s great.
  • Enjoyed clicking here and there, nice job!
  • Separate "informative" and "easy to understand" in evaluation question.&
  • The researchers may provide clearer description of what their research means to patients.
  • I like the collaborative nature of this.
  • I would present data so that non-scientific or individual form other science clearly understand.
  • I would consider using easier to understand language when describing the genetics research. The researchers are clearly very bright and it is great data, but dense to get through.
  • Further interactive sessions with the CAB scientist members would form a great addition to ask additional questions about each others' work and to see whether cross-collaborations between different fields are possible. Perhaps these types of interactions will be scheduled later on in the trajectory? I found the work presented very interesting and would love to hear more about it.     
  • The presentations were informative and easier to understand.&
  • Awesome presentation!   
PPT#3-Overall suggestions/comments     

  • Both of my kids are adopted.  My younger son was adopted from Thailand.  We don't know any details about his birth family.  When I read your study I think of him and how important this is going to be to adoptees who have little data on their birth family.&
  • It would be good to understand the sources of information used for the studies. Are they all primary sources? Or were there secondary data sources that were utilized?
  • Overall the 3rd PPT was very good. Sharing parent/child stories and related research is nice. Thank you!!!
  • I found the genetic research tied to autism of great interest to me both as a parent as well as a provider.  We have often discussed the implication of Autism like symptoms that exist in our girls with Turner Syndrome (close to 100%) and varied based on level of mosacism. Sleep disturbances are common in our TS population.  The discussions make me wonder if we are seeing the same subset of problems due to the lack of estrogen which we know is present or is there something on the second X chromosome that protects typical girls (XX) from the incidence of autism which is why our XO girls and boys are more likely affected.  Good conversation on why genetic information even that which crosses over disease states may be relevant to understanding clinical symptoms.
  • I found the information very interesting - especially in ways that genetic information can be used to improve care, teaching and patient/family knowledge and adherence.
  • The YouTube video of Dr. from George Washington U. was helpful to understand her part/her research.
  • I like what Dr. Hu and Dr. Veatch are doing.  Is there something we can do to help them make progress on their research?
  • I have enjoyed the patient experience formats. It is great to hear a perspective from a fellow scientist who has had a family member affected by genotypic variations. 
Meeting#4 presentation (PPT#4)     

  • There is too much information on the slides, and putting links to videos where there is additional description needed is not efficient. Viewers (like me) are highly unlikely to click a link to watch a 3 minute video when they are already short on time. It would be better if you had slides with less content and recorded a speaker who describes what they want viewers to get out of it. As an example, when I have to do online training for OSHA and other work-related certifications, a slide set with an audio recording, followed by questions that demonstrate the viewer understood the key elements of content, would be more efficient.
  • I thought it was well put together but some of the slides were quite "dense".  Perhaps if I had time to view all of the presentations on YouTube, it would help. 
  • Some of the technical information was over my head, but presented in a nice fashion!
  • There was a lot of information. Still not entirely sure what these companies do. I didn't watch the associated videos or read the websites but that may help my understanding.   
PPT#4: Overview of existing resources (PCORnet, eMERGE)                   

  • Having the actual findings from eMERGE phase I and II would be helpful – and/or a list of publications that were a result of the effort.  Same comment maybe for PCORnet.
  • The extensive explanation of PCORnet was very helpful.  
  • I will dig to find out more about PCORnet, as there may be a collaboration opportunity.
  • I had some difficulty opening a few videos, Prometheus and Pathfinder.   
  • eMERGE seems like it is a great opportunity. I was not aware of this project previously.
PPT#4: Examples of technologies (Prometheus, LLC and Pathfinder HI)           

  • I was unaware of many of these companies previously and this PowerPoint introduced me to them.                                                   
PPT#4: Examples of Electronic Medical record systems                       

  • Can a patient and/or guardian access their own EHR?  Do PHR's exist?  How does an individual get access to their PHR?                                           
  • The links were really helpful.
PPT#4: Project website                                   

  • The definition and description of PCORnet was extremely helpful in providing a framework for how we researchers could access genetic data and incorporate it in research to improve health outcomes.                    
  • Materials are very well designed and presented!                            
  • Maybe there would be a suggestion at the beginning about how much time this PP takes, just so I can best set aside adequate time.  I could just add up all of the video times as well. :)  I really like the information, thanks!                       
  • To help update some of the eMERGE projects, I am sending a presentation via email to Dr. Talebizadeh. I recently gave this talk at a symposium on personalized medicine in Beijing. This provides an overview of some interesting projects eMERGE is conducting and gives website addresses linking to some nice tools that are available.
PPT#4: Overall suggestions/comments                           

  • So far the information has been really helpful! I’m learning so much about PCORI and PCORnet. Very exciting!       
  • The PowerPoint presentations continue to be informative and very helpful.          
  • The final slide (#29) says "Please respond to the survey at your earliest convenience".  I suggest replacing this sentence with an actual due date so participants know the turnaround time. 
  • Thank you for all the hardworking behind this.                         
  • Thanks for the explanations and links, very helpful in understanding the 'big picture' of what this project is trying to do.                                           
  • I have enjoyed participating in the in-person group discussions. I was disappointed I was out of town for the last one.
  • Would be good to have a summary slide with the most important features of these initiatives and how these compare to one and other. The same comment applies to information shared about technologies and health record systems.