“Patients look for healthcare information online” – healthtalk.org on bringing the internet into the consultation room
It is rare that someone can honestly say they have helped five million people in the last 12 months, but it’s a reality for Luís Carrasqueiro; Chief Executive of healthtalk.org, a leading, online source of people’s health experiences. The website is focused on sharing people’s stories through accessible, bite-size patient interviews. He sat down with us to talk about the website’s journey so far and to offer his views on why working with the internet – not against it, is key to improving patient outcomes and experience:
What is the healthtalk.org mission?
Our mission as a charity is to help patients, their loved ones, families and friends to be better informed and make better decisions. Because if you know what is going to happen, what may happen, and what it could feel like, you can do that.
The website equally benefits healthcare professionals, and can be used in lots of different ways – even academically; from sociologists to anthropologists, doctors and nurses. While the website is our main contact with patients, healthcare professionals are also a key audience for us and we find Twitter a key communication channel for contact with them.
In terms of who visits our website, we know that about two thirds are patients with a quarter of people are looking for information for a loved-one, while six per cent of our traffic is from health professionals.
80% of medical and many nursing schools teach using our website, so we also know healthcare professionals use our website as a training resource. We once had a medical student feedback that he loved our website because it was like “having patients on tap.” Not exactly charming, but to the point.
Healthcare professionals can use healthtalk.org to understand what really matters to patients, how they feel, what they value and what they don’t value. In a nutshell; what works and what doesn’t work.
Healthtalk.org is one of the internet’s leading source of people’s health experiences, how do you go about selecting the stories you share?
We work very closely with the Health Experiences Research Group – part of the Nuffield Department of Primary Care Health Sciences at the University of Oxford. They conduct or are involved in all research made available on healthtalk.org and create all of our videos. Once the research side is finished, our team of three prepare all content for publication, and carry out the promotional and charitable aspect of the work for ongoing public benefit.
After the selection process the research team will film patient/service user interviews. Very often people feel safest in their own homes, so we film, intimate, semi-structured interviews, in people’s own living rooms. We also have audio and text-only interviews, when people are not comfortable appearing in their own image, but the vast majority do.
They generally start like a story, with “tell me how it all began.” The interview will last between one-two hours, and the researchers will normally speak to 30-50 people per project, until they reach a point where they are no longer hearing anything new on the subject. A point when they have gathered a wide and diverse range of experiences is known as ‘maximum variation’.
The research and films are made with very strong ethics behind them, the interviewee’s comfort and needs are priority. It never ceases to amaze me how giving people are. They give us their faces and share their stories with us – often very intimate experiences. It’s so generous of them, and just incredible I think.
After the interviews are finished the researchers then spend around six months reviewing the content and identifying key themes, and it is these themes that drive healthtalk.org. If you go to the website and look at any condition, it’s broken down like a patient journey. From“when did you first discover something was wrong?” to going to the doctor, diagnosis, treatment types, sometimes right through to end-of-life care. All shared from the comfort of their own homes.
What drew you personally towards the organisation?
The story of how I came to the organisation is pretty simple. I used it. About 15 years ago my father was diagnosed with prostate cancer and his doctor just prescribed him a course of hormone therapy. They had literally just given him a prescription and sent him home. The only information given was that he would have to come back to the hospital at some point to have this injection, and he would need to do that every few months. That was it. No explanation of what that procedure or the condition would mean to him, or even what hormone therapy actually is. Nothing. Zero.
I immediately went online, and found this website – healthtalk.org. At the time it was called DIPEx and looked basic, but was stacked with people’s experiences, such as men talking to camera about what it was like to go through hormone therapy and to have prostate cancer. I was really touched by it. I then had a sit down with my family, explaining what was going to happen. Not particularly conversations I wanted to have with my parents, but necessary, and you know, it helped me too.
When the opportunity to work at healthtalk.org came along years’ later, I thought, “oohh I think I know these guys.” The website had evolved considerably but I still recognised it because of how much it had helped me. I could see its value and that it deserved attention and care.
What do you hope to achieve through your involvement?
I joined just as we had launched the new website, which was great, and very, very important to our mission and what we have been able to achieve. In the last year we have more than doubled our usage and are helping around five million people a year, which for a charity of just three staff isn’t bad going. Thanks to our Technology Manager Adam, we have improved our technology as the vast majority of our users (60%) are on mobiles and tablets. We are just about to do a very quiet redesign of the website, that most users won’t even notice, but it will make it more responsive to mobiles, something so important in today’s climate.
I’m most proud of the work we have done over the past year to measure our impact. Our Communication Manager Jo has put in so much effort tracking our user’s behaviour and feelings about our website.
We run many micro surveys which receive tens of thousands of responses. We have also just started a more in-depth, 26 question survey, about how people feel about the website and how it has changed their behaviour. We have also started tracking how the website has influenced people’s decision making during discussions with their doctors. We get lots and lots of responses that allow us to not just have the lovely anecdotal individual stories that I have shared with you, but also the key numbers to back up those sentiments. It’s important to know what’s working and what isn’t, so we can deliver the best possible service to our users. There are some areas where we are exceeding expectations, that I think reflect how our users feel about the website.
62% of our played videos are played from start to finish. Which for the internet is amazing. They aren’t long (2-5 mins) but people clearly stick around.
Why are engagement platforms like this so important?
One of the key reasons people come to our website is that they feel alone. If you have just been diagnosed with something, or are breast feeding for example, you can feel really lonely and isolated.
It’s the concept of it’s your problem, your issue – everyone handles that differently. One woman in one of the pancreatic cancer videos said “I wanted to know every tube that was going into my body.” She literally wanted to know everything. However, there was a man in a similar video who had the polar opposite feeling: “I normally want to know everything that is going to happen, but this time, I don’t want to know anything; ” because knowing was just overwhelming and upsetting.
I think whether you go to healthtalk.org or find another online platform where you can express yourself or connect with us others in similar situations, it’s important to know those outlets are there to turn to. We have lots of metrics that are impressive, but the one I think we are proudest of, isn’t necessarily the highest number. It’s 70%.
70% of people say they leave our website feeling less alone and better prepared for the journey ahead. To me that’s excellent, my favourite number and why I love what I do.
85% say it is the best information they have found anywhere – which is also great, but perhaps more subjective.
What are some of the most common patient experience issues people share?
People often have something to say about the care they receive, specifically their interactions with doctors. Sometimes this is flagged on the website, often people aren’t just thinking of other patients, they have direct messages for healthcare professionals. They will speak to camera and say things like “Doctors, don’t do this” or “stop doing that…” In other cases they will just want to say “thank you.” And for staff that is massively encouraging.
The thing that I have found most impressive is the sheer diversity of experiences available. There isn’t necessarily a common issue that comes up over and over again.
We have roughly 25,000 videos, so there is plenty of room for variation. Everything is spoken about. So, if you want to see how pets are important to patients, or, how patients are interacting with the internet etc. it’s going to be there.
A healthcare professional could almost think of us as an archive of possible questions, and as a research tool to understand what patients are saying in general. There is no agenda, it’s not overwhelming negative or positive, so there is always a balance of experiences which is important from a research point of view.
Do any specific videos or experiences stand out in your mind?
Some are really simple. Little bits of advice that people want to give to others, but they have massive impact. My trustee Jane Kirk always remembers one with a cancer patient sharing her advice on chemotherapy. She talked about how it makes your skin feel horrible and sensitive, so buy the best bed linen you can afford because it will make such a big difference at the end of a day of chemotherapy. So it can be as simple as that but the impact on someone about to start a course of treatment, is immeasurable.
The one that really gets me was from a woman who had motor neurone disease, discussing intimacy with her husband. It was something I even find it difficult to think about and share without welling up. Her lack of muscle control meant she wasn’t able to be intimate with him physically, he could cuddle her, but she could no longer cuddle him back. She was crying on the video, and it’s just deeply affecting.
We’ve got lots of sad videos about really emotive subjects covering 93 health conditions, such as pancreatic cancer, self-harm, etc. However it’s not always sad. It can be instructional and positive on subjects like breastfeeding and you will have mothers who talk about the difficulties they have had with it, but there are also some where they share the sheer joy they felt from the experience. The happy ones stick in your mind too.
Which videos do you have the highest user response to?
The most visited section of the website is actually symptoms of pancreatic cancer. It’s a condition that is very difficult to spot, and though it’s not massively common, people worry.
You will see traffic at 3am from people searching for symptoms, probably when they are lying in bed worrying and can’t get to sleep at night. Motor Neurone Disease tends to be the second most visited for similar reasons.
Patients are not the only people affected by conditions they have, those around them also feel the knock‑on impact and the number of searches can be magnified by the patient’s loved ones looking for answers and trying to help.
Are there any other ways that you think video communication and video platforms could support care improvement and knowledge sharing?
On the website the answer is probably no, because we think that the consistency of what we do is really important. Our chosen methodology works and its robustness is its strength, so why change it?
We often get asked ‘why don’t you do forums?’ They are very difficult to do well. Forums are full of people worrying other people and that’s not what we do, or want to do. Plus we only have three staff so we don’t have the resource for this activity. There are other charities that are specialists in their conditions and have more staff. We are not specialists in a condition, but in our research approach, so forums are just not right for us.
Our colleague Professor Louise Locock is doing something very important, something called Accelerated Experience Based Co-Design (AEBCD). That basically means that she collates our videos into themed packages called trigger films. They then get taken to e.g. a hospital, or clinic and shown to patients and staff together, to facilitate and“trigger” discussion around a certain theme. The end goal being to use the knowledge gained, and the discussions generated for staff and patients to co-design better services. The approach is really accelerating this area of healthcare improvement.
We have to remember what makes videos so important or relevant? Text and audio are good as well, but videos have an affective dimension, that allows you to read other people emotionally. It’s not just about engaging your rational brain, but feeling what people might be feeling, and this is generally considered a very important way of stimulating healthcare improvement. Getting staff to understand what matters most to patients, and look within themselves for how to transform the service.
Focus groups are great, but that work takes time. If you already have interviews with patients ready made and they can be just as effective you can also save time and money. Louise has done lots of great work with organisations around the country, and I think that is only going to grow.
What’s the organisation’s end goal?
We have this amazing resource, which we as a charity are very happy to share, but we would like it to be used more widely. We get links from NHS Choices etc. and it’s great that we have five million people using the website, but why not 20 million? Why aren’t doctors telling patients? If you want to know more about your condition, it does not end with a leaflet – In fact it barely starts with a leaflet.
You should know more about your condition than the medical team, you need to know about the impact it is going to have on you and your family.
For us, it’s about being more integrated into the health and social care process in general and being more widely used. Although I do think that SEO (search engine optimisation) is the name of our game, and is what we need to continue being good at, improve and focus on.
Essentially we want patients to be able to make better, well informed decisions about their care. To be able to take care of themselves so they are empowered to look for information by themselves, on the internet or otherwise.
The internet has a bad reputation for being a poor source of healthcare information, but there is a lot of great stuff on there. While you don’t want people scouring endless websites and worrying themselves sick, you equally don’t want doctors telling patients not to look on the internet for healthcare information. What message does that send to patients? One – “I’ve told you not to do it, so if you do it, you won’t tell me out of fear”– which blocks dialogue. Two – it also assumes that people are going to respect that, but the reality is that people have probably done it already, and will do it again.
One statistic sticks in my mind, around half of the British population are looking for healthcare information on the internet. I think doctors need to bring the internet into the consultation and work with it. If you don’t, patients are going to do it anyway, only in secret, and that will shut down communication with doctors, rather than improve it.
In part two of our interview Luis discusses judging this year’s Positive Practice in Mental Health Awards and healthtalk.org’s charitable and organisational plans for the future