From day one, Patient Power has been about giving a voice to patients and addressing the real concerns and issues of patients and caregivers. That’s one reason we do regular visitor surveys, such as our current Spring 2012 survey. We constantly strive to better understand the people we serve; their needs and concerns; and the impact of what we provide. The initial results are fascinating and I wanted to share some here (click here to see the up-to-date results) . If you haven’t already participated in the survey, please add your voice right now.
- While 94 percent of survey respondents who visit Patient Power are confident in their knowledge about their health concern, 9 percent are not confident their doctor is knowledgeable. And 26 percent say they doctor does not do enough to help them as patients be more knowledgeable or in control.
- 35 percent say they look for updates on their condition every day.
- The number one reason they come to Patient Power is to see or hear interviews with experts in their condition.
When we asked them to rank the sources of their information:
- Doctor or Nurse was number one but Patient Power was a very close second followed by patient advocacy groups.
- Pharmaceutical company websites were at the bottom of the list and the general news media was only slightly higher.
When you wonder what people do with the information, the survey told us:
- 84 percent said they have or will discuss what they learned from Patient Power with their doctor and the number one benefit they cite is that it gives them more confidence in their discussions
- 97 percent have or will recommend Patient Power to others
My takeaways from this:
Among patients with serious illnesses, like those we serve, patients are becoming very savvy and active as they search for information frequently. They wish their doctors would do more, but since they don’t patients go searching themselves and become confident in what they know.
Despite millions spent by pharmaceutical companies and general health sites, patients eventually zero in on sources that are the most specific and current for them. That remains their doctor or nurse or niche websites or advocacy groups that speak directly to them. Then they depend upon these sources as their “radar” to tell them when there is something new and to put it in perspective.
I am gratified Patient Power ranks so highly and that visitors recommend us to others. If you are one of them, thank you! And you can be sure we are noting your suggestions and will improve with your guidance. We know what we do can make a huge difference in your health and we honor the trust you put in us.
Wishing you and your family the best of health!
Andrew
I’m a newly diagnosed CLL victim with CD38 and ZAP70 negative – ‘no’ phish testing has been done as I’m assuming the oncologist after a cursory pat down believes it’s not necessary given the CD and ZAP and visible lymph node status.
Do you think the phish test is necessary? I’ve read that CD and ZAP cannot always be relied upon for an accurate diagnosis of indolent stage.
Thank you
I would like to know if there is an extensive study of a sizable CLL population (statistically significant) that summarizes what is common about peoples background history leading up to the day of their diagnosis?
I know I would contribute such information.as 20 years of 2nd hand smoke; eating fruit and grapes from orchards in the DDT and nuclear fallout era,
working as an engineer in manufacturing environments (is CLL occupationally related) and
have flown to Asia many times enduring lots of
gamma radiation. What about ones diet and period
of life (ie hormonal changes)etc.