Doctoral student Mohamed Chekli met SPM member Matthew Katz MD (radiologist), and asked for help with a survey:
Would you please put me in touch with people in your network who are offering personal health records (or patient portals) to individuals dealing with chronic disease to empower them and help them with the self-management of their disease? I would like to ask them if they can invite their patients to take an online ANONYMOUS survey about “Personal Health Records and Chronic Disease” which was developed as part of my doctoral thesis?
Most of the questions are about PHRs, but it's within the context of researching how to manage chronic conditions, and a few questions later on are specifically about chronic conditions.
The survey is long, and most of the questions are about PHRs and online access. But it's within the context of researching how to manage chronic conditions, and a few questions later on are specifically about chronic conditions.
Here's the request, specifically:
Please, help improve chronic disease prevention and care by taking an online ANONYMOUS survey about “Personal Health Records and Chronic Disease” at: http://ww3.unipark.de/uc/ca_
Your participation would be greatly appreciated and may be beneficial for improving healthcare services for individuals with chronic disease… And do not hesitate to spread the word and invite people you may know to participate to the study.
It’s deceptive to state this is a survey for chronic disease patients when it is a survey for those who use electronic medical records systems. Please don’t waste people’s time.
I don’t know how far you got through it – it is indeed long, and I should have said that.
Most of the questions are about PHRs, but it’s within the context of researching how to manage chronic conditions, and a few questions later on are specifically about chronic conditions.
I apologize if you feel misled, and I’ll edit the post accordingly. Thanks for speaking up.
I met Mohamed while giving a talk, and he is genuinely interested in trying to improve medical care. He is genuinely interested in patient empowerment. My apologies to Dave, who generously posted this communication here after I made an e-introduction.
I agree the information could have been presented in a more clear format. I take responsibility for that in part, since I thought it would be helpful to introduce Mohamed to S4PM.
However, constructive criticism and civility are more productive responses in my opinion. If society members want to encourage patient participation-oriented research then honey goes further than vinegar.
Dave, thank you again. My apologies again to you for not helping prepare something more formal but was simply trying to help.
It’s all good, Matt – in the old days we had lengthy vetting processes before anything got seen publicly, but that’s kinda old-school now. Sometimes things don’t go completely as planned, but it’s nothing to lose sleep over. IMO, anyway.
There’s far more good to be gained from bringing folks together online than there is harm from something unclear. And Pat’s comment led me to realize it could easily be better for everyone in the future so I made the fix – quick, easy.