Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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PCOS study at Cornell

Discussion in 'Active Clinical Studies' started by jess100, Jul 21, 2016.

  1. jess100

    jess100 Senior Member

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    Women With Polycystic Ovary Syndrome (PCOS) Needed for Research Study (Cornell University)


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    Researchers at Cornell University are examining the medical experiences and health-related beliefs of women diagnosed with PCOS between 18 and 38 years. The online survey will take 10 to 20 minutes to complete. Participants will enter a raffle for one of many $50 Amazon gift cards!

    Please select the link to take the survey:
    https://cornell.qualtrics.com/SE/?SID=SV_395wUNtaoxscJPn

    For more information, please contact Professor Marla Lujan at show contact info
     
  2. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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    Health-related beliefs of the patients? Why?
     
    Valentijn likes this.
  3. Snowdrop

    Snowdrop Rebel without a biscuit

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    When people say what they think about something the problem is in thinking that the analysis is valid when what it is is a static representation of a fluid (not sure what word is quite right--construct?) That is ask me a decade ago about my health issues, 5 years ago, today. Understanding evolves, things change.

    I'm sure by now that researchers know to to consider experiences of women of colour as potentially different. I do appreciate that researchers want to know these things but I find approaches to collecting this information so limited and poorly conceived.

    Do the researchers have some thoughts on what they might find? Questions that have lead them to explore the issue? You can have questions without bias--just wanting to do an exploration to validate or not what you think might be happening is worth further investigation. Then pick a few people who are representative of different groups of people and do an open exploration of in depth interview with these few that would help bring to light any further things to explore with a wider group. There are so many variables that the questionnaire design seems overly simplistic.

    I suppose this approach is more anthropological than psychological and no doubt the first complaint would be expense. But money gets sucked up almost daily it seems on studies that are destined to be nearly useless and decisions are made based on it. That is an institutional problem. We often make early designs of things better. If we're going to continue to explore psychological aspects of medical experience more needs to be done (a lot more than I've said here) to approach the issue with better tools.

    Also there should be a change in thinking among researchers--an exploration of their bias particularly toward not believing what women say about their health and accepting as the first default explanation is to invalidate whatever information they collect. First question the questioner--indeed why are they asking about beliefs?. . .
     
    GreyOwl likes this.

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