If you watched the recent conversation between our digital strategist, Debbie, and eczema patient advocate, Ashley Lora, you’ll know many important and interesting topics were brought to light. One key topic was the lack of information and knowledge sharing, which is something patient communities are really crying out for. It’s something I’m personally really passionate about, so I wanted to expand on the problems and some potential solutions a little further.

I am that patient. I am the patient who has been left with many unanswered questions. I am the patient who’s had to do lots of my own research - allowing me to try treatments for my ulcerative colitis that weren’t offered by my inflammatory bowel disease (IBD) team, and diagnosing my own skin condition. I am the patient who has been sent away with a printed sheet to learn about the new treatment I’m starting because the gastroenterologist (GI) didn’t have time to go through any of it with me. I am the patient who ultimately lost all faith in the healthcare system because of my repeated experiences of invalidation and a lack of a good standard of care.

Knowledge gaps filled by the World Wild Web

Many patients want to understand medication decisions and be able to be part of the decision-making process about what goes into their body. They want to understand why treatment X might work better for them than treatment Z. They want to understand what the latest research is saying and how that could impact future treatment options. They want to know if there’s a clinical trial they can get involved in. But all too often, no one is telling them these things.

In an ideal world, patients would know exactly where they can look at their treatment options more closely. They would be able to look at the research and outcomes in layman's terms and understand which treatment might work best for them and why, as well as preferences such as route of administration (rectal, oral, subcutaneous, or intravenous). With this knowledge, patients could view their options and make an informed choice depending on what best suits their lifestyle.

Newly diagnosed patients or those with lower health literacy skills often only know what the doctor tells them. They trust that the healthcare professional looking after them knows best. But, when one, two, or three, of the treatment options haven’t helped or have stopped helping, or tests haven’t highlighted a cause for symptoms, those patients begin asking questions, often outside of their healthcare team. They start asking Dr Google and other patients on social media and in groups. This is concerning because, without good health literacy skills, the World Wide Web is a confusing, and often scary, place. There’s conflicting information, misinformation, and people and companies looking to pray on the vulnerable and sick.

Filling gaps as an advocate and what the life science industry has to offer

I’m an IBD advocate, and I’m lucky enough to be able to read and join in with, a very active online community of GIs. Each week, on X, MondayNightIBD engages GIs around the world in conversations that are useful for patients like me to read. It helps me understand how the people sitting on the other side of the table think and prioritise. It also helps me understand what their pain points are!

I utilise lists to keep an eye on what’s going on in GI and I follow GI event coverage on social media to learn about breakthroughs in science and technology. During COVID, I was regularly scrolling through a list I’d created of UK gastroenterologists, colorectal surgeons, and IBD specialist researchers, to stay up to date on what the recommendations were so I could feed it back to my community.

I have access to this information, and for that I am grateful, but most people living with IBD or raising awareness of IBD don’t go to the nerdy lengths I go to. They won’t read journal papers because they do not understand them, so they have no idea what treatments, therapies, apps etc. are being developed until someone like me or a charitable organisation picks it up and starts to talk about it. And I don’t have all the time in the world to keep myself up to date and the community apprised. In fact, I often feel like I have no time to invest in that side of things; it’s dependent on how much support has been necessary elsewhere in the community each week, as there’s only so much of my time I am able to give freely.

I understand the issues around pharma directly engaging with patients and sharing their research. However, patients should, at the very least, be able to access this information or know it exists.

Reimagining the doctor-patient relationship

The doctor-patient relationship has the potential to be a wonderful source of knowledge, inspiration, and hope, but as it stands, it regularly falls far short of that. The time I get with my GI is mainly taken up by her running through standard questions about the frequency, urgency, and consistency of my bowel movements and the medications I’m taking. Imagine if that time were instead used to talk about the results of my latest tests, what this might mean going forward, and what options I might have in the future based on the newest research. That is a conversation I’d like to be part of!

Why should health companies care about the patient information gap

At this point, you might be wondering why pharma, device, or diagnostic teams should even concern themselves with addressing the information gap faced by patients. After all, their primary focus is on developing and delivering innovative treatments and diagnostics. However, there's a compelling value proposition for health companies to invest in patient education and engagement.

When patients feel informed and engaged, they're more likely to get tested, adhere to treatment plans, participate in clinical trials, and become advocates for better care within their communities. This, in turn, can lead to improved patient outcomes, increased brand loyalty, and ultimately, better business results for pharma companies.

Moreover, by collaborating with patients to create accurate, understandable educational materials, health companies can demonstrate their commitment to patient well-being and build trust with the very people they aim to serve. This trust is essential in an era where patients are increasingly skeptical of the pharmaceutical industry and seeking greater transparency.

Investing in patient education and engagement is not just a nice-to-have – it's a strategic imperative for health companies looking to thrive in a patient-beneficial healthcare landscape.

Mini-communities are a great way to make change in healthcare

Small collaborative groups of healthcare stakeholders can create solutions. At Merakoi, we call these "mini-communities" and they offer a powerful way to address the current lack of information sharing between healthcare providers, pharma companies, and patients. By bringing together diverse groups of patients, physicians, specialists, and pharma or health tech innovators, mini-communities enable the co-creation and dissemination of accurate, understandable educational materials that meet the needs of all stakeholders.

So, how would this work in practice? Let's use IBD as an example. An IBD mini-community could be segmented based on factors like patient activation measurements (PAM), disease type, professional skills, clinical trial experience, and influence. Highly activated patients with content creation skills would be ideally suited for the co-creation phase, as they understand the language and informational needs of other patients. Physicians could provide medical expertise and ensure accuracy, while pharma companies could share their latest research and developments.

To ensure the co-created materials are truly accessible and understandable, additional mini-community cohorts could be involved in the review process. For example, patients with lower health literacy levels could provide feedback on the clarity and comprehensibility of the content. If the materials focus on clinical trial information, a cohort of patients with trial experience should be engaged to offer their unique insights.

Given the constantly evolving nature of medical research and treatment advancements, mini-community partnerships should be ongoing, allowing for the timely updating of educational materials. This continuous engagement not only ensures that patients have access to the most current information but also fosters a sense of trust and collaboration between all parties involved.

Co-created content can then be disseminated through various channels, including patient advocacy groups, influential patient leaders, healthcare providers, and specialists. By involving mini-communities of influential patients in the creation and sharing of these materials, we can amplify their reach and impact.

Ready to bridge knowledge gaps in your therapy area?

At Merakoi, we're passionate about harnessing the power of mini-communities to bridge the information gap and empower patients to take control of their health journeys. By fostering ongoing collaboration between patients, healthcare providers, and pharma companies, we're creating a future where every patient has access to the knowledge and support they need to thrive.

Together, we can build a world where no patient is left in the dark, searching for answers. If this sounds like the kind of healthcare innovation you want to participate in, let's chat!

About Merakoi
Merakoi partners with health and life sciences companies to build mini-communities that guide product development through continuous user insights. Our network of patients/advocates and proprietary community platform enable engaging, longitudinal co-creation between users and developers. The result is human-centered solutions that resonate powerfully in the real world.

Seven years after being diagnosed with ulcerative colitis, a form of inflammatory bowel disease (IBD), I finally opened up about it online. I found my disease difficult to talk about openly due to what I perceived to be the embarrassing nature of it. I had been using Twitter under a pseudonym to engage with the IBD community before that, so I was already aware that many people with IBD had an unmet need for support and understanding.

My post went viral. People with IBD from all over the world were commenting on my post. I had hundreds of friend requests from the same people, and more besides.

Building IBDSuperHeroes, an organic mini-community

It was a very organic journey from that first post to patient advocacy. I’d already acknowledged the need for support and understanding, so I started writing blogs and raising awareness online. That was a pretty easy manoeuvre because I was working in social media marketing at the time. 

I set up IBDSuperHeroes with a small team of other people affected by IBD. We were essentially building a mini-community, bringing together people with shared experiences around a specific condition. We aimed to raise awareness and funds for IBD research. The need for a private group became apparent pretty quickly, so we set one up on Facebook. It was a beautiful sight. People were excited to have a space where they didn’t feel they needed to censor themselves. They didn’t have to tell a huge backstory to add context to a current situation like one might when talking to friends or family.

More and more people began advocating in the IBD space. Many people told me I had inspired them and given them the confidence they needed to make that leap. Over the years, I’ve seen many advocates come and go. I’ve also seen advocates come and stay.

Activating patient superheroes

Some advocates stick to story sharing and awareness raising. Others, like me, prioritise education. We learn as much as we can about disease management and disseminate information that we believe can help others. They might run communities, host podcasts, or just use social media. We’re the type of people who actively seek and get involved with IBD-related projects, from new digital health solutions to PPIE groups for IBD research or patient organisations. These people, who for merakoi are patient experts, have become respected and trusted contacts.

Harnessing mini-communities and cohorts at merakoi

As someone deeply engaged with the IBD online community, I've seen how it organically functions like the mini-communities merakoi builds, with different patient segments forming natural cohorts.

At merakoi, I get to apply my experience building IBDSuperHeroes to create purposeful patient communities for health innovators. I'm responsible for recruiting members, vetting them, getting them contracted, and scheduling all the interactions. Our digital platform makes this process seamless and efficient. I work closely with our partners to define the right cohorts for their needs, whether that's by treatment type, disease severity, online influence - you name it.

Essentially, I get to be a matchmaker, connecting the right patient voices to the right projects at the right time. And let me tell you, watching mini-community insights shape better health solutions never gets old.

It’s easy for me, as someone who is continually engaged with the online IBD community, to divide it into mini-communities. These mini-communities can be split in many different ways, such as:

From one-off input to continuous co-creation

I came to know merakoi early in its inception. I was a pharmaceutical company's lead patient consultant for an IBD project. They made the most of my marketing skills and disease experience. I was involved from the start, with everything from market research to survey design.

When the time came to dip into the aforementioned cohorts within my mini-communities, I’d got them ready-made. Lucky Pharma! I recruited patient experts for focus groups and patients and caregivers for surveys easily, because I knew my community and I had their trust. However, a great opportunity was potentially missed here.

Nearly all of the patients who got involved with the focus groups and patient survey were interested in doing more.

They asked me to let them know about future opportunities, whether they were part of the same project or unrelated. This was a lightbulb moment for me. These patients were eager to stay engaged, but the typical one-off project model didn't allow for that.

I know from working in patient recruitment for merakoi, that patients in all disease areas really do want to be involved as much as possible. Highly activated patients are keen to change the future of healthcare and patient support. They get involved with things like patient advisory groups, grant reviews, reading panels, or steering committees, which are usually a long-term commitment. But when Pharmaceutical or Biotech companies involve them, it’s usually a one-off project with a particular task, goal, and outcome. Once that has been achieved, the project is over and they have no idea what happens from there unless the drug hits the market several years later or the solution they worked on is released. 

Even lesser activated patients want to help where they can. I don’t doubt that money can be a driving factor in that, particularly because poor health can impact a person's ability to hold down a full-time job. But, some patients just enjoy feeling seen and heard. They want to tell their story and are keen to highlight gaps in the system or solutions designed for them. For some, there’s a genuine interest in the product, clinical trial, solution, app etc. They want to be involved further, but they are not given the opportunity. Others just love feeling like they’re contributing to the changes they want to see, whether it be in healthcare, diagnostics, digital health solutions, or disease management. It's an opportunity to be more than just a patient.

Ready to unleash the superpowers of patients?

It’s great that healthcare companies are recognising the value patients bring in product and service design. I love that more and more companies are involving patients during the design concept phase, rather than bringing them in to tick boxes once the design is complete. However, not continually engaging with potential users throughout the whole design phase results in the final product or service being unsuccessful. 

Patient insights being considered in the initial phases of product, service, or clinical trial design is great, but as it progresses, those insights get diluted. Ideally, there should be a continuous engagement and feedback loop. This ensures that when it’s time to release whatever the solution is, it’s real-world ready. Tried and tested, and then tried and tested again!

This engagement and feedback loop builds trust within the patient community, and if done right, will highlight to the community that you have a shared goal of improving healthcare. If members of the mini-community feel like valued and respected stakeholders, that positively impacts how the wider community sees you, and your product or service, long-term. 

At merakoi, we've seen the transformative power of continuous patient engagement through mini-communities and cohorts time and again. From clinical trials and digital therapeutics to medical devices, our partners have been able to create solutions that truly resonate with their target users by making patient input an integral part of the process from start to finish.

If you're ready to harness the superpowers of patients and create health solutions that hit the mark every time, we've got you. Contact me to learn more about building a mini-community for your next project. Together, let's unleash the potential of patient-partnered innovation!

About Merakoi
Merakoi partners with health and life sciences companies to build mini-communities that guide product development through continuous user insights. Our network of patients/advocates and proprietary community platform enable engaging, longitudinal co-creation between users and developers. The result is human-centered solutions that resonate powerfully in the real world.

Atopic eczema is one of the most prevalent skin conditions globally, affecting over 230 million people worldwide. There is a tendency to dismiss it as "just a skin condition," which means patients' needs are not always met in a timely and supportive manner.

Also known as atopic dermatitis (AD),  the condition affects mental health and daily life in a variety of ways and places a heavy burden on patients and caregivers alike.

During World Eczema Day, September 14th, we held a LinkedIn Live discussion with Ashley Wall and Ruth Holroyd, two of our AD patient experts, to raise awareness of the impact and burden of this condition.

In this post, we share some highlights from our highly informative and engaging chat. You can view the full video replay of the discussion on our YouTube channel.

Is there a difference between atopic eczema and atopic dermatitis?

Our first question, given the two terms used to describe the condition, was whether there was a difference between atopic eczema and atopic dermatitis.

Ashley clarified that she would categorize the two terms differently. She explained that atopic dermatitis is a lifelong eczema condition that affects people with moderate to severe eczema. Dermatitis comes in different forms, such as contact dermatitis. You can get dermatitis on your scalp or on your hands. In contrast, atopic dermatitis affects your entire body. “So I pretty much consider eczema like a hub,” she said. “ And then there's different branches. So atopic dermatitis is one hub of eczema. That's how I look at it.”

Living with the burden of atopic eczema

We then discussed how frustrating it is to have atopic dermatitis dismissed as ‘just a skin condition’.

“It is really frustrating because it's affected me since childhood,” said Ruth. “I grew up with a lot of shame and guilt because I was always being told off for scratching and told off for getting blood on my clothes. So I just internalized all that. I felt like it was my fault.”

In describing the burden of living with the condition, Ruth explained how “it affects your sleep and your mental health. It affects how attractive you feel to other people. People comment on it. So as a woman, that's really hard. I always had it worse on my face. It affects every single part of my life, just from being able to wash the dishes and make the bed. Sometimes when your skin splits, when you try and do things, it's life-limiting. And sometimes for some of us, we don't grow out of it. So it's not just an itch.”

Ruth's comments resonated with Ashley, who noted that when she was younger the Internet wasn't the source of information it is today. “Since we didn't see any representation it compounded the shame and isolation,” she said.  “But now I've joined communities. I do  Zoom calls with eczema communities or experts. If I am having a breakout, I will contact somebody in the community and talk about it. I'll also do research on certain websites or social media. The internet has really changed the game completely. It has brought so much access, something that we didn't have before, which was so unfortunate.”

Turning online for information

“I just love the online community with atopic dermatitis because people are so helpful. Everybody wants to help, everybody gives opinions. So it's really great.” 

Ashley Wall

Ruth and Ashley both commented on how fast you can get answers online when it's hard to get an appointment with a doctor. Ruth mentioned a recent study looking at the huge rise in eczema conversations on social media. “I think perhaps that is because we don't feel heard and we don't always feel like we get to have the advice we want from the medical professionals,” she explained. 

Ruth cautioned however, that going online is not without its downsides.  “I've made so many friends and learned so much, but you have to be careful what you take from there,” she said. “And sometimes it can be quite triggering as well for me. Sometimes I have to come right off it because my whole life revolves around it and it can be quite triggering to see people struggling and people with bad skin and then people offering what I might not think is sensible advice. It can be quite difficult to kind of step back and not get upset by it.”

Another downside, according to Ashley, is information overload. “The amount of information about certain skin conditions is overwhelming,” she said.  “And everybody wants to be seen. Everybody wants to be heard. The issue with that is there are not enough people to actually sort out what's fact or fiction. What might work for some might not work for others.”

As a counterbalance, Ashley believes more skin specialists should be online so that evidence-based answers can be provided. She suggested, “if somebody puts out something and it may not be true, doctors can do a split screen reaction video and say, ‘I see what you're saying, but here is some factual information about what you put out and why what you put out may not actually be true. And here's the research to back it up."

On being your own best health advocate

The more research-based information patients have, the better able they will be to advocate for themselves and the treatment they want to try next, which is something Ruth is passionate about. “I really feel strongly about being an advocate for your position, for your condition,” she explained,” because if there is a treatment out there that you really want and you can find out about it, then you can go and ask your practitioner for it.”

“It's very frustrating for people who are really struggling with their skin because it's hard in a 20-minute consultation, even for the doctor or dermatologist to really get an idea of what you're going through,” said Ruth. “It's so hard to get the best out of those appointments. And so I come armed with all the information and pictures of my skin and what is the hardest thing for me.”

Ruth advises that the best way to prepare for a consultation is to have a clear objective in mind.  “It's too difficult to do everything at once,” she explained, “so having an objective helps. I want this one thing to be spoken about and we'll try and tackle it this way, because, with eczema, it's not like, oh, here, I found the answer. This is what will help. It's a million things. And you try things that don't work and you eventually find the detective work helps you find the way to navigate the condition on your own. You have to become an expert because the GP, if that's who you are seeing, is a general practitioner. He isn't going to know probably as much as the patient in many cases.”

How to get the most out of your dermatology appointment

Navigating the insurance barrier

The USA, where Ashley lives, has another barrier to good health care in that treatment is determined by a patient's insurance coverage. “Do you have insurance? What kind of insurance? Do they take your insurance? They take your insurance, but the medication won't be covered or maybe part of it will be covered. It is such a draining process that you're going to start to find people kind of trying to solve it with the home products even before they even get to the doctor.”

Ashley told us a story about hearing a doctor complain about how people come into them when their skin is at its worst. They don't come in when it's just beginning or in the middle. She told the doctor, that one of the reasons for this “is because there are so many different barriers and layers. And they're trying to do whatever they can. You know, they're in pain. They're in agony. So they want a quick fix. And if you can't see the doctor within a couple of weeks, months, maybe even up to a year, that's very frustrating for a patient.” Ashley believes that to address this issue, patients need better access to treatment options, regardless of their economic status.

Describing her frustration at the system, Ashley explained that often “doctors are double booked and you feel like they listen to keywords of what you say. And based on that, they'll go off on a diagnosis and they will write your prescription and then you’ll be on your way. And, you want more, you want to learn how to manage it, not just how to temporarily treat it.There's a whole system that needs to be worked on for patients.” 

“It's very intimidating as well,” she continued. “You're sitting on a cold chair and they're above you on a higher chair or standing with the chart, not really making eye contact. I've had very dismissive doctors. You can tell they're busy. It's almost like you feel like you're a burden when they come in and they're so stressed and exhausted. You don't want to feel like that. You want to feel like, hey, you're in the right place. Let's work on it. Tell me what's going on. You know, patients are in agony for the most part. And so anything that makes them feel like a burden will already just make the whole experience worse and have people avoid it if they can.”

The experience of working with merakoi on a client project 

Ashley and Ruth had both worked together on a client project around the patient journey of people living with Atopic Dermatitis, highlighting their unmet needs and helping to shape strategic decisions and informing campaigns and content creation to engage people living with the condition. 

“You have to make the process comfortable for participants,” recommended Ashley. “They're spending their time doing this not only to help themselves but really to advocate for others because there's a lot of people that have this condition that don't have a voice. And what we are trying to do is help them come out of that. They don't have to be an advocate themselves, but they should advocate for themselves at least. And that's so important. You want the process to be smooth sailing and change from the way it has been, and it can change.”

Adding to Ashley’s comments, Ruth recalled something she pointed out during the course of the project. “I have never been asked by anyone, how do you feel? And I think that's the bit that gets missed,” she said. “And we spent a long time talking about the mental health aspects of living with chronic skin conditions during that project, just to help them understand the sheer magnitude of that. I think they were focusing more on the symptoms. And that brings the whole complexity to decision making and whether people will enroll and stick with a trial.”

Looking to the future: research and digital health

As we wrapped up our discussion, we speculated about what could be in store for the the treatment of severe skin conditions in the future.

Ashley is intrigued by emerging discussions on the role of environmental pollutants in the rise of skin conditions, such as eczema. Additionally, she believes research needs to reflect the growing diversity of multi-ethnic groups that are underrepresented, yet continually growing.  “There are so many different cultures and ethnicities, but we want to make sure that we're covering them as well,” she advised. “So mixed races and ethnicities, people that are having eczema younger, but also people that are having eczema older.”

Responding to a question about using digital applications to track her skin condition, Ruth told us that neither she, nor others in her dermatitis community, do so suggesting the reason for this is because they don’t want to “focus so much on what is bad.” 

“These trackers are all asking you to put in what's bad, how itchy were you? Where were you itchy, what were you eating? It becomes so obsessive,” explained Ruth. “One thing I've learned is letting go of what is happening and accepting that I have a skin condition and not being so obsessive has been a game changer for me. I became so obsessed, it actually made me worse. And when I let go and stop being like that, mentally it's better and my skin seems to improve when I'm less obsessed.”

Ashley sees more value in apps designed for caregivers. “I think it'll help people that actually don't have the condition,” she said. Agreeing with Ruth about the downside of obsessively tracking symptoms, she asked “who wants to be reminded of their condition every single day? You become obsessive. Is it getting better? Is it not getting better? I don't think that is going to help people mentally seeing how they're tracking their eczema. After a while, the mental toll that it will take not seeing yourself progress or get better could kind of do more damage than good.”

Based on her comparison, people with severe eczema use skin apps like weight loss apps. “Once you've lost the weight, you don't really need to track every single thing anymore. Similarly, once eczema becomes moderate to mild, I don't think people are going to use it and it becomes redundant.”

Ruth also spoke about dermatologists' use of digital apps. She described having to stand in her underwear while her dermatologist used an app to check her skin. “And this app requires him to be so quick and most of the time it times him out and he hasn't finished and he has to start again. And he's so embarrassed because I'm standing there in my underwear and he's awkward about that. But he needs the app to give him a score of how my skin is doing. If someone's got really good skin, it might be quick. But if someone has quite a lot of eczema, it would be better if it wasn’t timed.”

In Ashley's opinion, a wearable device would be more effective. “A wearable that can assess your skin when it's doing well and when it's not doing well,” she suggested. “I think that would be so much more helpful for people with eczema.”

Closing thoughts

At the end of each of our live discussions, we ask our speakers to share a closing thought.  Ruth began by sharing her five-second rule. “When my skin was at its worst, people felt they had a right to ask me what was going on all the time. And I think what I would like to teach people is that there is a five-second rule. If you're looking at someone and you're interested to find out why - and I understand most people have a genuine interest and they care - but if you can't change it in five seconds, then just don't mention it.”

“It takes so much effort for me to go out when my skin is like that,” added Ruth. “And that was one of the things that made it so hard to live with because I did not want to be talking about it. I had probably not been out for weeks and I became a complete hermit. So I would want everyone to learn the five-second rule and it applies to everything. If someone's got really bad skin, whether that's acne, or a burn, whether they have a cleft lip, whether they have any condition that makes them look different to you, you have no right to that medical diagnosis. And sometimes we will want to talk about it, but most of the time we won't.”

For Ashley, her message focused on being an advocate for others.  “I think it's so important that people understand that the reason why we're doing this is so that they themselves can find their inner strength. I don't think a lot of people understand how powerful they are despite what they're going through.”

“And I hope that they can connect with other people in the community,” she continued, “and other people outside of the community. It is wonderful when you connect to people that have the same condition or that don't have your condition but have something else. And you get to learn about what's going on in their realm and they can learn about what's going on in your realm. It's just so powerful. I've learned so much just talking to people and connecting to people. Just recognize your own strength and know that there are advocates out there and we want the future to be better. We're excited. You know, we're trying to hopefully pave the way for an awesome future for nobody to have to struggle in the way that all of us have previously.

Learn more about our speakers

Ashley Wall is a writer, consultant, and eczema patient advocate who’s battled this skin condition for three decades. As an eczema warrior, she’s had the pleasure of speaking on stage in front of a pharmaceutical crowd of 300 industry leaders, interviewing celebrities such as BAFTA award winner Peter Moffat, and attending leading events through her advocacy work. She’s extremely passionate about helping suffering patients and hopes to see eczema disappear within her lifetime. Her blog is Itchin Since '87 Itchin Since '87.

Ruth Holroyd is an author, blogger and patient advocate. She writes about allergies, anaphylaxis, asthma, eczema and topical steroid withdrawal on her award winning blog www.whatallergy.com. She won the Free From Food Awards Hero Award 2021 and has written two books. ‘Anaphylaxis: The Essential Guide: An Action Plan For Living With Life-Threatening Allergies’ which focuses on anxiety and fear and how to live with the daily challenge of living with a life-limiting condition. Her second book, The Shape of Skin, is a poetry book for people with eczema, psoriasis, and sensitive skin.

Further resources recommended by Ashley and Ruth

• Friends/Family/Peers
• Forums such as Reddit - https://www.reddit.com/r/eczema/
• Facebook for forums and groups.
• Google/Google Scholar
• Social Media - mainly doctors, dermatologists, eczema content creators
• Alternative Healing - Just in case there might be something that would be more conducive to my healing than medical treatment
• Booking a doctor's appointment 
• Instagram and TikTok are great if you want to find other people living AD and eczema.
• A great blog written by patients - https://atopicdermatitis.net/
• https://www.talkhealthpartnership.com/ have forums, expert speakers, giveaways etc.
• The National Eczema Society – The UK charity for people with eczema. https://eczema.org
• The US Eczema Society - https://nationaleczema.org/
• The British Association of Dermatologists -   www.bad.org.uk
• The British Skin Foundation - https://knowyourskin.britishskinfoundation.org.uk/
• Eczema Outreach Support – A Scottish charity helping people with eczema - www.eos.org.uk
• https://www.eczema.com/eczema-support-and-resources
•  ITSAN – Topical Withdrawal Syndrome Support. The only charity supporting people going through TSW. https://www.itsan.org
• Scratch That - An online information resource, community and awareness campaign for a condition called Topical Steroid Withdrawal.  https://scratchthat.org.uk/

Getting an appointment or referral can be hard enough with long waiting lists and a shortage of  specialists. But once you've got a date and time in the diary, the really hard work begins. If you’ve ever come away from a hospital appointment confused and with unanswered questions, you’ll know where I’m coming from. It’s happened to most of us.

No matter what country you live in, navigating any appointment with your specialist can be hard work. You need to make sure you get seen, heard and understood so you’re happy with the treatment path provided for you.

I’ve had atopic dermatitis and chronic eczema all my life and have found it hard to get the help I needed. For instance, there was no adult service in my county, so I had to fight to see further afield at an already overburdened Dermatology Centre.  Because it’s not life threatening,it feels like AD is not taken as seriously as it should be; from my own experience it can take over many aspects of daily life and also become central to mental health too. With this in mind I’ve put together these tips and suggestions to help you find your way to the right treatment.

Getting that referral

If you haven’t yet managed to get a referral to a dermatologist, much of what is shared below will also be relevant, regarding research and preparation for your visit to the GP. Familiarise yourself with the NICE patient guidelines for your condition to help you understand what treatment is available and also what you’d like to try.  You have a choice, so don’t be afraid to refuse any treatment you’re worried about and ask for something else. I recommend you take a proactive approach and ask for details on anything you’ve researched or a new  drug or treatment you’ve heard about, don’t always wait for your doctor to recommend it.

Preparing for your appointment

Have a goal in mind - This can be daunting as you may not know what questions you have or what treatment you want.  Start to note down what symptoms you struggle with the most, what areas of your body flare and cause the most discomfort. What would be your ultimate goal? What are your most troublesome symptoms? Atopic dermatitis can be doubly difficult as it waxes and wanes, flares and heals in cycles and may not be at its worst for your appointment. If you can prioritise objectives for your own health, it makes it easier to work with a specialist towards the management or healing goals you want.

Triggers, health and nutrition - Think also about what you think your triggers are.  If you think food might be causing you skin problems, there may be a dietician you can get referred to. Keep a food, mood and symptoms diary for a few weeks prior to your appointment and go armed with the results. By recording the times of day and the situations that cause you the most discomfort, or the places and activities that seem to cause flares or symptoms to increase, could help you work out how to avoid issues and uncover answers.

Mental health and therapy - If you are finding your skin causes you a lot of anxiety, this is also something you might be able to get extra help with. Tell your dermatologist that you are interested in therapy; past trauma, depression, anxiety and low mood can have a direct impact on your skin health. A 2020 study⁽¹⁾ in the Journal of Allergy and Clinical Immunology, looked into Atopic Eczema in adulthood and the risk of depression and anxiety. They found that adults with atopic dermatitis are far more likely to develop depression and anxiety.  There are many different kinds of therapy so find out what’s available and then think about what would work best for you. 

Getting the right help to guide you towards finding a more positive mindset can really help with management and healing. If you are living with a lot of shame, anger, guilt and frustration that could well be playing out on your skin. Think of it as a canvas of your overall health - everything is linked; gut, brain, skin microbiome – a science we barely understand but more studies are being done.

Pain management – There are many pain medications available, and they can come with side effects and be addictive if used long term. Ensure you know the risks associated with any medication and ask your specialist for advice. Ask about local pain clinics as these are often available and will give you an opportunity to explore group therapy with others who have similar challenges. You may also benefit from one to one therapy to help you understand your pain, what it’s trying to tell you and what you can do to help manage the pain, through changing your lifestyle, getting further help or making use of resources available to make your life easier. 

Make a list of questions to ask

You don’t need to spend hours on this, just get an idea of what treatments you might be able to access. If you’re not sure, visit the NHS website and find the NICE guidelines for AD. Ask about the treatments you’d like to be considered for:

• Current Treatments – Guidance on the usage of topical steroids changed last year to advise only short term use. If you are worried about these creams, speak to your dermatologist about other treatments available. I am now 3.5 years into topical steroid withdrawal and healing well but this is not something I would recommend lightly. It’s not easy and won’t be relevant to everyone but if you notice more frequent rebound flares and potency of topical steroids increasing with less and shorter healing effect, discuss this with your dermatologist.
• Food Allergy skin prick tests – These can help to identify allergies which could be affecting your skin, breathing and atopic conditions.
• Patch tests for contact allergies – This is helpful for identifying allergens from your environment such as dust, perfumes, preservatives, chemicals etc.
• UVB light therapy – Can help some patients but is a big time commitment, requiring regular short visits, but can offer a great deal of short term healing and relief to some.
• Potassium Permanganate – A special treatment for oozy or wet eczema. This treatment needs specialist supervision so is not always offered but can help certain stages of atopic dermatitis healing.
• Respite care – If you’re really struggling, some specialist centres offer respite care beds where you can spend an extended time learning from specialists about what dressings, creams, treatments etc. might work for you, and some even come with an overnight stay.
• Paste bandages and wet wraps – These can be very effective at treating stubborn patches that will not heal. You should be able to get advice and guidance on how to do this at your dermatology clinic.
• Dietician referral – Eating a healthy and varied diet can make a huge difference.Working with a dietician could help you discover whether you have food sensitivities, allergies or need to avoid high histamine or salicylate foods, for instance. Food can be complex for atopic dermatitis patients, but certain foods can make things worse by causing extra inflammation and stress on the digestive system. Similarly, if you are constantly worrying about what food you eat that could be causing you stress that may affect digestion. It’s all about finding a healthy balance.
• Clinical psychologist – If you think your mental health is suffering and you are experiencing anxiety, depression etc. ask for some therapy.  There is no shame in working with a therapist and it can be very eye opening  to help you understand how you see yourself and your condition and uncover unhelpful and incorrect beliefs about worth, shame, guilt etc. 
• New treatments - Ask what treatments you are eligible for e.g. Immunosuppressants, Biologics, JAK inhibitors and get all the information you need to help you make the decision. Don’t be rushed into a clinical trial, make sure you’re ready and understand what’s involved and the potential risks. (Link to one of Rob’s blogs about clinical trials)
• Emollients – These can vary greatly from creams to thicker stickier emollients, and some may work better for your skin. E.g. Some people are even sensitive to paraffin, the base for most moisturisers for atopic skin, however there are now paraffin free alternatives and your specialist will be able to advise you.
• Blood tests - Testing for deficiencies and underlying conditions may be something you could consider. If you can get these done it could help rule out any undiagnosed deficiencies or irregularities or that may be having a knock on effect on your skin.
• Prepare your evidence - Take with you any pictures of your skin during flares or any reactions you’re worried about.  We all know how annoying it can be when you get to the day of your appointment and your skin looks great! You need to be firm and explain how hard you find your skin condition and having photographic evidence will really help.  Take photos in a good light or get a friend to take them so you can get good quality close up images. Also keeping a diary of what your skin is like can offer insight into what’s going on.

When agreeing on a new treatment

Ask as many questions as you can to ensure you’re happy about starting a new treatment, e.g.,

• When was this drug first approved? 
• What are the known side effects? 
• How long should I take it? 
• How should I wean off? And can you advise how to go about weaning off a treatment.
• How long till it starts taking effect? 
• What outcome should I expect?

I also ask, would you be happy to use this drug? It can help you feel they are being genuine and understand concerns you may have. You want to find the solution that fits your current situation. For instance, if you are risk averse you should choose a safer option. If you are desperate and feel you have run out of options, you may choose a new drug or clinical trial.

How to educate your dermatologist

Most dermatologists are very busy and realistically they may leap to the first response and the easiest solution. What we want to achieve is an open, frank and respectful dialogue with our specialist so that we can all work together towards a beneficial outcome.

Make sure they know what your goal is for your skin and what’s most important. It can be a good strategy to work on one thing at a time towards a healing goal.

Make notes to refer to and if you have found studies you’d like to discuss, take copies with you to share. Whilst your dermatologist has been seeing patients with atopic dermatitis for years, he/she hasn’t lived in your skin. You know your body and your own lived experience better than anyone. If you think they are not listening to your concerns, tell them. You have a choice how your skin is managed; you do not have to follow any treatment you’re not happy with. Be questioning and inquisitive and ask for alternatives.

Making sure you get taken seriously

If you feel like your specialist isn’t listening or dismissing your concerns, be firm and ask them directly for the treatment you would like. This is your skin, and you should be able to advocate for what you need.

• Make a list of questions before your appointment
• Take a notepad and pen to take notes
• Ask for clarification of any terms you don’t understand. For instance, words like excoriation, nodular prurigo, pompholyx can be confusing.  Ask for the spelling of the word and note it down so you can look it up afterwards. 
• Take a family member or friend for support – this can really help, just  having a second pair of ears. They can be there just as your wingman/woman and not take part or you could brief them beforehand if you think they will have good questions to ask too. Or simply if you don’t feel strong enough, they can ask questions for you.
• Make sure you don’t get rushed and review your questions to ensure you asked them all. Appointments and clinics can be very busy and often feel rushed. Use all of your allotted time and make the most of your appointment.

If you still leave feeling your concerns have not been heard, here’s what to do

• Get your dermatologist's email address – If you have questions left unanswered or further queries after you’ve left, most specialists will respond to you via email.
• Ask to see a different dermatologist. There is no shame in doing this, we should be able to choose the professional we work with, if their manner isn’t the best. Some specialists can be very blunt and it might be that a more sensitive dermatologist will be able to offer you better support.
• PALS – The Patient Advice Liaison Service is an NHS confidential advice, support and information resource where you can request a referral to a different centre or specialist.
• Make an official complaint – obviously a last resort but if you really feel unheard and are not happy with your treatment this is something you could consider. If we don’t speak out no one will know you’re experiencing issues and you may not be the only one struggling.

Learning from others

What’s important to remember is that you are not alone. According to eczema.org 1 in 5 children and 1 in 10 adults experience AD at some point in their lives.  A smaller percentage of these go on to experience life long and more chronic skin problems. So it makes sense to try to connect with other fellow eczema people. There are many ways to do this, via blogs, social media groups, and forums.

• Patient advocates - Find trusted patient advocates and ask them about their treatments and what they’ve found works. Obviously, they can’t advise you, but it can help to hear positive feedback on a treatment you’re considering. There are a lot of them out there on Facebook, Instagram, bloggers and Vloggers on YouTube. Get searching!
• Social media – There is a lot of activity on social media around atopic dermatitis and eczema and it can be hard to find the information you need and also very triggering for many patients. If you find it difficult seeing people share pictures of severe eczema then this might not be the right place for you to research. However, you may find people who understand what you’re going through and who can offer you support and friendship in what can be a lonely condition.  E.g. How do they manage the itch, sleep better at night, manage exercise when sweating hurts so much. Just remember, it is a particularly uncomfortable and life limiting condition and the passion, anger and fear can come across on social media channels. Limit your exposure and follow people you resonate with.  You can often learn about treatments that could help you be open minded but realistic.

Take control of your skin condition

I hope these pointers have been helpful at assisting you to become the patient advocate in your condition. Arming yourself with information can help give you peace of mind, knowing you are doing the best you can for yourself.  Acceptance and understanding can help you live with atopic dermatitis and help others find answers too.

It’s taken me years to get there, but I finally find myself on a healing path that I’m happy with but it took time and effort to really dig into what motivated me and research to learn more. Get proactive and take control of your skin healing.

References

Ref 1 - https://pubmed.ncbi.nlm.nih.gov/31479767/