April 18th, 2014
It’s no surprise that when it comes to intimate matters, people want anonymity, confidentiality, discretion. Privacy concerns play a big role in people’s decisions to get tested for HIV and other sexually transmitted infections. They want to keep their test results private, especially given the stigma surrounding sexual health.
Health care providers know that privacy concerns are an impediment to testing—but to what extent?
The BC Centre for Disease Control conducted a survey with people who visited its STI and HIV clinic for testing between July 2012 and March 2013. The focus was whether an individual would be deterred from testing if personal health information were linked to a provincial electronic health record, which would allow health workers outside of the clinic to access the information.
The data shows that privacy concerns would have a huge impact on willingness to test.
Many people didn’t want other health workers to be able to see their information:
A significant proportion of participants did not think it was acceptable for other health professionals to have access to their clinical data from the STI clinic, including family physician (23%), pharmacist (50%), medical specialist (25%), nurses in other STI clinics (26%), and public health nurses doing follow-up (20%).
Further, many people said they would be disinclined to test if their sexual health information was included in electronic health records:
Possibly of greatest concern, 31% of participants stated they would be less likely to get tested for STIs and HIV if health records from their visit to the BCCDC Provincial STI/HIV clinic were made available as part of the provincial EHR. There was no correlation between likelihood of not testing for STIs/HIV and age, gender, sexual orientation, cultural group, or education level.
And perhaps more significantly, the data suggests that if people knew where their health information was going and who had access to it, they would not bother with testing—the survey framed the implementation of electronic health records as a hypothetical scenario, but in practice this has already happened.
April 11th, 2014
by Janet Madsen | @janet_madsen
I attended a webinar on Wednesday about women and HIV. It featured Dr. Mary Kestler of Oak Tree Clinic, and Alana, a woman living with HIV. Both women made some great points on HIV care, relationships, and risk.
Alana talked about the details of diagnosis- her extreme seroconversion sickness, an alarming viral load. When she started HIV treatment she had side effects that made her very sick, so she worked with her doctor to change the regime and make it more manageable. Thankfully, now she’s healthy and doing well.
Alana also talked openly about the stigma she’s experienced in First Nations communities. One time she was turned away from a Sundance because people were afraid they’d be at risk for HIV. One of her personal goals is to confront the resistance she sees. She says people don’t want to talk about HIV, and she wants to change that. She hasn’t seen a lot of First Nations people disclosing their status publicly, so she wants to lead by opening up the conversation.
Mary covered clinical aspects of HIV care: the differences in diagnosis, treatment and relationships. Women are often diagnosed when they are much sicker than men, and can have nastier side effects to HIV drugs. I liked that Mary talked about the important connection between a woman and her doctor. She said that she sees some women who want to go off HIV treatments and seek out spiritual or alternative healing. While Mary’s training as a doctor makes her think it’s not the best care available, it’s important to honour the therapeutic relationship between herself and her patients so the door to care remains open.
One of the questions Mary was asked was about transmission risks for serodiscordant couples. When a couple approaches her about getting pregnant and asks if they can try to conceive naturally, Mary says there isn’t one answer for all. Some couples are comfortable forgoing condoms if the viral load of the positive partner is undetectable. Some want to time it perfectly and do it naturally, others don’t want to take any risks. Everyone has different risk tolerance.
Alana finished up the webinar talking about the “us and them” that stigma brings: “We all have HIV status whether we’re negative or positive.” If I think about a key word to sum up what Alana and Mary said, it would be together. Together a community can face the fears of HIV and work against stigma. Together couples can make decisions about risk and confidence. Together a doctor and woman can talk about the best individual treatment and care. It’s about working together for respect.
Posted in Body Health
, HIV pregnancy
, HIV Prevention
, HIV progression
, HIV stigma
, HIV testing
, HIV Transmission
, HIV Treatment
, Risk factor
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