Patient Contributed Cases
=========================

Over all observations:
-Mostly free text fields only
-Mix of personal and medical information
-Patients detailed specific information about medications, procedures,
and lab results. For example, "Ovarian cancer has a blood marker
called a CA125 which should be under 35. At the time of surgery mine
was 300 and then went down to as low as 95 then started rising again
and has been around 200. I had 2 cat scans that came back clear."
-Patients doing the research - "You have to stay strong and positive
and always do your own research."
-Cool feature: some breast cancer users had a pink ribbon as their
profile picture on Revolution Health

Internet Mental Health: Stories of Recovery and Personal Experiences
Mental Health Case discussing medications for diagnosed bipolar
disorder

Revolution Health: Personal Stories
-Stories divided by condition type (i.e. cancer)
Non-hodgkins lymphoma survior describing difficulties with
chemotherapy
Ovarian cancer patient discussing illness/chemo

Cancer Survivors Network: Personal Web Pages
(username: snoflingor pwd: 9957)
Structured Narratives:
How and when did you learn about your cancer?
What types of treatment(s) have occurred?
What have been the most important things that have helped you through
your survivorship?
What have you learned from your experiences that you would like to
share?
Are there positive experiences you would like to share?
College student with Hodgkins
Forum discussion on specific chemotherapy treatment

Fertile Hope: Survivor Stories
Structured Narratives:
Gender
Age at Diagnosis
Current Age
Primary Cancer
Current Treatment Stage
Cancer Treatments Received
Where were you in life when you were diagnosed and how did it change
your life?
Did you undergo any fertility preservation treatments before or during
treatment?
If you underwent or considered any fertility preservation treatments,
please share your experience. If not, please share with us your
reasons for foregoing treatment:
26 Female with Cervical Cancer

Live Strong: Hear Survivors Stories
-includes video
-tagging
-long narratives
Young bone cancer survivor

National Coalition for Cancer Survivorship: Submit your Story
Tell Us Your Survivor Story!
Use your experience to help other survivors navigate a cancer
diagnosis, whether you are recently diagnosed, post-treatment, or a
caregiver/family/friend. NCCS is collecting Survivor Profiles to
feature on our website and in other communication efforts. We are
looking for stories that are:
• Compelling
• Topic-Focused
• Easy to Read
• Relatable
• Short (1 page maximum per topic)
• Personal
Cancer Diagnosis
Treatment Date(s)
Topic: Please select one of the following categories that your story
fits into
Story: Please provide a brief summary of your story.
Example story

Diabetes Health: Personal Stories
-narrative, treated like "articles"
-ratings
Insulin Overdose Story

WebMd: Messageboards
-ratings of posts
Soliciting help for mother with type 1 diabetes

Diabetes Wiki
-unstructured
-links to terminology on other pages of the wiki
-ratings
-most visited
Young man with Type I diabetes