Saving face: GMFA's sexual health messaging service

This article originally appeared in HIV Treatment Update, a newsletter published by NAM between 1992 and 2013.
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Gay men’s health charity, GMFA, is launching a new service to make telling sexual partners about STIs less daunting. Gus Cairns investigates.

You’re at the GUM clinic for a check-up and have just been told you have a sexually transmitted infection (STI). You’re ushered in to see the health adviser. Maybe you’re embarrassed, maybe you’re in shock from the news of an HIV diagnosis; either way, you only half-hear them saying “...it’s a good idea to contact people you’ve had sex with recently and let them know. One of them infected you and may not know it, and others may have caught it; they’d want to get a check-up too.”

You know this is the right thing to do, but it’s scary.

Glossary

sensitivity

When using a diagnostic test, the probability that a person who does have a medical condition will receive the correct test result (i.e. positive). 

pilot study

Small-scale, preliminary study, conducted to evaluate feasibility, time, cost, adverse events, and improve upon the design of a future full-scale research project.

 

post-exposure prophylaxis (PEP)

A month-long course of antiretroviral medicines taken after exposure or possible exposure to HIV, to reduce the risk of acquiring HIV.

referral

A healthcare professional’s recommendation that a person sees another medical specialist or service.

syphilis

A sexually transmitted infection caused by the bacterium Treponema pallidum. Transmission can occur by direct contact with a syphilis sore during vaginal, anal, or oral sex. Sores may be found around the penis, vagina, or anus, or in the rectum, on the lips, or in the mouth, but syphilis is often asymptomatic. It can spread from an infected mother to her unborn baby.

So you reassure the adviser you’ll contact the two people you’ve mentioned (she doesn’t need to know about the other five), but know you won’t. Clutching your prescription, you exit guiltily...

Which would be a pity. Contact tracing is one of the most efficient ways of detecting STIs. An audit at London’s 56 Dean Street clinic in July 2010 found that the rate of HIV diagnosis in men who have sex with men (MSM) referred by a sexual contact was 23%, significantly higher than the estimated prevalence of HIV amongst MSM in London (about 10%).1 Contact tracing may also be a good way of detecting recent infections.

Now there’s an alternative. The gay men’s health charity GMFA is piloting an STI notification scheme – the Sexual Health Messaging Service (SHMS).

SHMSs are a new idea in the UK, but launched in the US in 1999, after a sudden upsurge in syphilis cases in gay men in San Francisco. Public health workers found that the only means many men had of contacting partners was through their online profile name. A collaboration with a dating website enabled the scheme to contact 40% of the named partners of men diagnosed with syphilis.2

An SHMS does the partner notification for you. In GMFA’s scheme, if you know your partner’s email address, mobile number or profile name on one of four gay men’s dating sites (Manhunt, Fitlads, Gaydar or Recon) and the dating app Bender, it can send an automated message that you’ve been diagnosed with an STI and they should get a check-up. You can be anonymous, or identify yourself but let the system decide what to say.

GMFA’s Donal Heath found that: “A lot of people I talked to at first said ‘You can’t do that’.” But after he explained how it would work, many clinics and potential users came round.

GMFA’s system “is a hybrid of two approaches”. US services have varied from open-access systems not even requiring proof of diagnosis to ones where messaging is done by health advisers.

inSPOT (www.inspot.org) is an open-access messaging system developed in San Francisco in 2004, now covering the US and Canada. You could in theory use it anywhere, though there is only referral information for these countries.

It emails illustrated e-cards to your contacts, bearing the heading “From a concerned friend”. A typical one reads: “It’s not what you brought to the party, it’s what you left with. I left with an STI, you might have too. Get checked out soon” and directs them to inSPOT. You can be on-record or anonymous.

A 2006 report3 showed that 16,000 e-cards were sent (over 75% anonymously) to 26,000 recipients in 2005; 38% of recipients sought more information.

The snag with inSPOT is that anyone can access it, so it lends itself to stag-night pranks. Donal says: “Though inSPOT seems well used, a lot of bogus messages have been sent.”

Another approach is a collaboration between clinics and the gay dating site Manhunt. Here there’s no direct contact, even anonymous and net-filtered, between patient and recipient. Health advisers from clinics and voluntary organisations put up their own profile on the site and do the messaging when someone is diagnosed.

“It seems to have been quite successful; what’s great about this approach is that recipients of messages can reply and ask questions of the health advisers,” says Donal. But so far there’s not a lot of evaluation data.

However, it’s resource-heavy in these austere times. One problem is that this approach still relies on the patient telling the truth about who they’ve had sex with. There’s also the matter of people’s contact names. “It might feel OK to tell the adviser about Niceguy42, but Rawfukka42 less so.”

GMFA has compromised between the two systems. You can only get on the system if you have a diagnosis and are given a unique ID and PIN; then you can contact people yourself by logging in to a secure website address - delivering messages as an email, an SMS text or a dating-website message. The four-stage process feels familiar to anyone who’s shopped online.

The subject of partner notification will still have to be handled with skill and sensitivity, but this provides one more option. Donal Heath, GMFA

You don’t have to specify your STI diagnosis (people may be scared of disclosing the more serious STIs like HIV) but GMFA’s own research found that recipients were much more likely to seek help if they were told, and more likely to respond to named rather than anonymous informants.

Then you add the contact details of your sexual partners and specify the messaging method. Messages are tailored to the specific medium. Typing in a profile name will pull up the profile so you can check you’re messaging the right person. You then preview your message, tick boxes to say you understand the terms and conditions – just like internet shopping – and send. You can also ask your clinic to do it for you.

Donal sends a test SMS to my phone. A couple of minutes later my phone pings and the following message arrives, from ‘gmfaNoReply’: “Someone you had sex with has been diagnosed with an STI. We advise you to get checked at a GU clinic.”

The notification contains a reference number and a web address to contact a clinic for a fast-track service. This reference is anonymous but detects that someone has responded, enabling clinics to measure the effectiveness of contact tracing. You or your clinic can also use it to tell the system about a check-up and any treatment. If people don’t respond, they get one reminder message.    

The project is a pilot, provided by seven GUM clinics in London, Brighton, Sheffield and Manchester, and relatively few people have used it so far.

“There’s only a proportion of people for whom the SHMS is the ideal thing,” says Donal. “In some cases it’s not the right thing: for instance, if you are diagnosed with HIV and need to contact someone so they can get post-exposure prophylaxis (PEP).”   

The websites have been cautious about their users’ possible reaction to getting unsolicited STI warnings. On Gaydar and Recon you have to specifically allow messages from GMFA. Gaydar is about to launch a publicity drive about the messaging service and will have a button on your profile to allow messages. If the pilot is a success, there are plans to expand it.

The SHMS system can’t make partner notification completely painless. One study of gay men, two-thirds of them with HIV, commented that several with HIV “felt too consumed by their own thoughts and fears to consider engaging in partner notification”.4 Equally, as Donal says, “People say they want to be informed, but finding out that you might have been in contact with an STI can blind you… Partner notification is a no-brainer, but where STIs are concerned emotions still have the power to overthrow logic.”

“The subject of partner notification will still have to be handled with skill and sensitivity,” concludes Donal, “but this provides one more option.”      

More information

You can find out more about the scheme at www.gmfa.org.uk/shms. (Note: this is NOT the weblink you’ll be given if you are diagnosed.) Alternatively you can contact GMFA on 020 7738 6872 or email aboutgmfa@gmfa.org.uk.

References
  1. Gill R, Natha M HIV partner notification: does it matter? BASHH 9th annual Spring meeting, 2011.
  2. Klausner JD et al. Tracing a syphilis epidemic through cyberspace. JAMA 284(4):447-449, 2000.
  3. Levine DK et al. inSPOT.org: a unique online partner notification system. 2006 National STD Prevention Conference, Florida, abstract 61, 2006.
  4. Mimiaga MJ et al. Partner notification after STD and HIV exposures and infections: knowledge, attitudes and experiences of Massachusetts men who have sex with men. Public Health Reports 124(1): 111-119, 2009.