We met Liz at the British Association for Sexual Health and HIV (BASHH) conference last year and it was brilliant to get to hear from her about how Preptrack is being used in their practice. Liz is a Consultant in Sexual Health and Clinical Lead for the Saint Helen’s Sexual Health Service in Merseyside, she’s also the BASHH HIV and Blood Born Virus Secretary.
Liz has added Preptrack to the information and advice that her service provides to patients and finds it particularly helpful for people starting on event-based PrEP. She’s found that recommending the app to service users is reducing the number of patients coming to her with questions about PrEP allowing her to focus more on priority cases that need her specialist help. We were really pleased to get to talk to Liz about all of this. Watch the full video below or scroll down for the transcript of our conversation. Hear more from Liz on Twitter @LibOkecha
We’d like to chat to more people that are using Preptrack. If you’d like to share your experience please get in touch via social media or email email@example.com.
Q1: Can you tell us who you are and what you do?
My name’s Doctor Liz Okecha. I’m a Consultant in Sexual Health and HIV and Clinical Lead for Saint Helen’s Sexual Health Service in Merseyside. I also have roles within BASHH which is the British Association of Sexual Health and HIV as the HIV and Blood Born Virus Secretary.
Q2: What is PrEP and why is it so important?
For me PrEP, pre-exposure prophylaxis, represents a real game changer in managing and tackling HIV. For a long time people have not felt in control of whether or not they might be exposed to HIV. PrEP has allowed people to engage in sex in a way that their anxiety is lowered. We don’t see as many people coming in to see us for PEP which is the emergency medication used if somebody’s had an exposure. Chlamydia, gonorrhoea, all these things can be treated with antibiotics but, time and time again, people are wanting to be able to engage in sex and enjoy it really as well and I think pleasure is such an important part of of what we do. We should be promoting health but pleasure as well. So I suppose in a nutshell that’s why I think it’s important that we can actually improve people’s well-being with effective medication.
Q3: What stops people from using PrEP?
I think the word I would use is stigma and that’s a big, big issue. Some people might not necessarily consider themselves to be at risk and requiring PrEP. We know that certainly there’s data from UK Health Security Agency certainly from last year, the number of people who are testing positive for HIV is going down within the gay and bisexual men who have sex with men community. But in communities such as my own, heterosexual Sub-Saharan African, the uptake is quite poor in those communities and so really what I hear from patients sometimes is: “I don’t think that’s for me, that’s kind of for other people” and actually it’s kind of about getting risk across to people and kind of getting them to realize that actually this is a prevention tool as much as condoms.
I think the other thing that hasn’t really helped is that when PrEP was first available, particularly in England, it was part of the IMPACT trial and the criteria be enrolled on that trial was people who were deemed highest risk, and when I say that I say it in terms of multiple condomless sex, and so therefore to be eligible, the kind of perception, and again this is language that patients were using, was: “Well if somebody’s taking PrEP they must be having lots of sex with lots of people and I don’t want to be anywhere near that.” So actually having to then unlearn some of that, recently, and kind of see the progression since that trial to where we are now. In that actually people, especially within the gay and bisexual communities, the people saying: “Well actually you’re not on PrEP. What’s going on?” So it’s been really interesting seeing that transition over the last five years to see actually most people are generally taking PrEP and it’s the minority that aren’t. But I think we still have a long way to go.
Another thing I was thinking about was just generally some people don’t like taking medication and so actually saying to someone: “Well, actually, you have to take this medication, even if it’s just for a few days, or potentially daily,” can just be a barrier for some patients. And whether it’s a fear of side-effects or potentially disclosure. We see that a lot as well, that sometimes if someone’s living in a shared house or if they are in a long-term relationship but they’re having additional partners, then they might be worried that their partner might find out about their tablets. So lots of people have lots of reasons why they don’t use PrEP and we find our role certainly is to give people the information in order to make that informed decision.
Q4: How did you hear about Preptrack?
So it was really through social media. I am quite active on Twitter and I clicked on the link and I thought it was really great and the next day I spoke to one of my colleagues about it and we went on the website and the thing that I really liked about it was just the bright colors. It’s really fun, engaging, and also the fact that it’s validated as well and supported by Prepster and 56 Dean Street.
Q5: Why is Preptrack exciting and who should use it?
I just think it’s a fantastic app. It’s just the fact that: (A) It’s free. (B) It’s the way in which the language, the wording, which I really love about it. You’ve really, really thought about the experience of someone taking PrEP. The countdown, you know, actually you don’t necessarily have to be trying to work out when was it that I last [took PrEP]. As long as you put your data in, a lot of the questions and the things that people generally ask us are already answered just by nature of using the app.
When someone starts on PrEP there’s a lot of information that we give to patients. And sometimes I worry that they might not necessarily be able to retain all of the really important information. The main thing that is really crucial is that they understand how to take the medication. And, particularly if someone’s taking it event-based [PrEP], that can sometimes cause real issues in terms of what we perceive as the patient understanding what’s being said and then when they come for their follow-up appointment what actually happened.
So the thing that I really like about Preptrack is that, particularly for those patients who I worry might not quite have been able to retain all of the information that’s told at that first appointment, that actually you can plug in when you’ve taken the medication. It’s also personalised so it tells you exactly when you’re going to be protected, when you’re not protected, and then that reminder, that’s really specific for PrEP.
Now, I do mention about other applications that are used [to track PrEP] but particularly for people who are taking PrEP event-based, and it’s something that’s relatively new to them, finding something that is uniquely for PrEP is really useful for that patient because it speaks to them in a way that allows them to interact and self-manage their care. And I think a lot of sexual health really should be about self-management. We’re here to provide the tools and then it’s sort of up to the patient then to be able to to use those tools to navigate their own personal sexual health journey.
So that’s what I really like about it. That it’s targeted at the community, for the community and just how it’s also backed up by the clinical side as well. So I would just say thank you for saving me time as a clinician because, as you know, our time is precious because we are incredibly busy hopefully trying to manage as many STIs and PrEP patients as we can. But anything that frees my time is of the utmost important to me and I think, if anyone who’s doubting Preptrack or wondering about whether or not to use it, I would absolutely encourage you to do so because I think it’s a really useful adjunct to our clinical care.
Q6: What would you say to colleagues about Preptrack?
I would say it’s something that you can very easily incorporate into your electronic patient record system and and we’ve just added it to our SMS leaflets. Most clinics now are texting leaflets and PDFs to patients. What is useful for us is that all the nurses are aware of it. So if somebody has, for example, a telephone consultation then we can send them a link to a PrEP information leaflet butalso send them the Preptrack app so then they’re aware it before they then come to their new patient appointment and we do discuss it again obviously when they attend.
If you’re working, for example, in a service like mine and thinking about who’s going to be calling me to ask a question about should I be taking my medication or not taking my medication a lot of that can be answered by the app. So actually it saves me time because I’m not having to take lots of phone calls from people worried about what they should be doing with their medication. And it does mean that the phone calls that we do get tend to be from people who have had an issue and they have missed a tablet or they’ve missed a series of tablets and they really genuinely do need to know what to do.
But it’s something that actually we know that people are using online services. We know that actually people want to have access to information quickly. So, you know, we do advocate things like pillboxes, if people need to use them, and reminders. But I find that for some people that can be a bit analogue and actually what responds well, and maybe it’s a combination of a bit of digital, a bit of analogue, is using those combined tools to say that actually that’s going to promote them taking their medication and preventing them from from acquiring HIV.