We have seen over the past decade that patient self-education and participation in their own care have been steadily increasing with availability of the Internet.  It has enabled patients and caregivers to look online for information as well as to connect with other people in the patient community who can provide both knowledge of available treatment options  and support. 

 We often hear that online educational resources and communities are helpful for patients and caregivers, but we actually know very little of how and how much beyond that basic statement.  While many note that their care has been improved, we still lack actual data about the benefits realized and the impact on health care.  We need to present and discuss some actual data to the oncology community to convey the potentially constructive impact of epatients, Janet Freeman-Daily (@JFreemanDaily) and I are hoping to work with others in the lung cancer/ #LCSM community to develop a survey that can help convert some of the anecdotal strands in patient stories and discussion forums into interpretable data that we might present to cancer specialists to help health care professionals become more receptive to epatients and the value of online resources.

At this point, our first step is to address the key topics to cover in developing such a survey. We would like to dedicate the upcoming #LCSM chat on July 17^th (8 PM Eastern, 5 PM Pacific) to a crowd-sourced discussion of the most valuable questions to ask and results we should hope to report.  The chat will cover these central questions:

1)     How can we determine what the most useful  information is and where people are most successful in finding it?  

2)     How can we assess how HCPs receive/respond to information presented by patients & caregivers?

3)     Can we assess how this info is used in shaping care? Is there some way to learn if/how it improves outcomes?

4)     Will there be enough interest in this to expect many pts to participate? And how best to reach online pt community?

5)     How long a survey (time req’d) would be appropriate before it’s excessive?

We hope you’ll join us for the #LCSM tweet chat on July 17^th! Just follow the hashtag and add it to your Twitter comments. This is a great way to help contribute to the voice of the online community in speaking to what the experience means today and how it shapes cancer care.