The 2014 WEBSUMMIT: In poor health

Considering the massive global growth, power and value of digital health – its presence at this year’s Websummit was hugely lacking. The Summit, although young, is now considered to be 'THE' place that the tech world meets. The three-day event sees the convergence of leading digital companies collide with hundreds of startups and investors. In total 22,000 people attended this year.

The schedule was packed with talks on all the ‘hot’ tech topics such as big data, drones, 3D printing, music and e-commerce. In comparison there were only two health related talks and only one featured on the center stage: “Decoding Disease: Technology and the Cure for Cancer.” The other, “Health is the New Wealth”, was a panel discussion comprising of three young Medtech startups. In comparison to the talks, the digital health presence was far greater amongst the startups exhibiting. Geneix was proud to be one of them and as the only one focusing on genetics/personalised medicine we gathered quite a crowd.

The majority of digital health startups focused more on applying general concepts, such as telecommunications, sensors, social media and online reviews etc. to the healthcare space. With only a very small handful focusing on pure medical innovation or massive healthcare disruption.

The poor representation in the schedule, combined with the selection of startups exhibiting, hugely undermined the current state and future potential of digital health. There wasn't even a 'health' section for exhibiting startups, they were instead squeezed into lifestyle. Hardly fair for innovations that can save lives, improve treatment and cure diseases to be neighboured by 'find a local tennis buddy apps'. 

There were however a few golden highlights such as when speakers, talking on unrelated topics or asked directly where they saw the future of digital going, championed personalized medicine. It seemed that of all the digital health trends tailored treatment and genetics stood-out as the hot space to watch. Hopefully next year Websummit will catch-up and, like it's counter part SXSW, take the opportunity to explore the immense value and importance of digital health.

Our favourite Digital Health startups from Websummit:

- Babylon Health, a virtual health service in your pocket

- EpiBone, a revolutionary bone reconstruction company that allows patients to “grow their own bone”

- Immudicon, uses the immune system and revolutionary technology to fight cancer

- BluSense Diagnostics, a low-cost, user-friendly and cloud-connected device for Diabetes Type II monitoring  

The revolution of genomic medicine

Your genome is a unique set of biological data that contains lots of information about your chances of getting certain diseases and how you respond to different types of drugs, and in many ways we are just at the beginnings of a revolution in our understanding and use of that genomic data. But what sorts of technologies are powering this revolution? And what does this mean for us as patients and healthcare consumers?

The technology powering our genomic advances is referred to as Next Generation Sequencing (NGS for short). Any genome is just a sequence of the four basic building blocks of DNA – the As, Ts, Gs and Cs - and the human genome has 6bn of these. When the original human genome was sequenced (a term for decoding the order of the DNA building blocks) it took scientists around 10 years and $3bn working across 3 continents. The work was painstakingly done by decoding small segments of the genome and then using complex algorithms to stitch it all together. 

The newer NGS technology can be thought of as a “massively parallel” version of this older method, decoding millions of the fragments simultaneously. The latest techniques are able to sequence a whole genome for $1000 in one day (a speed of technological improvement more rapid that computing power’s Moore’s law). Hundreds of thousands of people have had their genomes sequenced using NGS technology and many more projects are underway such as the Genomics England 100,000 genomes endeavour. 

This explosion in genomic information is predicted to help patients in a few different ways.  Previously, genetic testing (for rare diseases, disease risk and increasingly for cancer treatment) was limited to testing only a tiny relevant portion of the genome, leaving lots of important information uncovered. NGS technologies mean that doctors and researchers can gather a lot more knowledge about a patient and can better diagnose illnesses and choose the most appropriate treatment. Additionally some of the “population scale” experiments using genome sequencing are expected to uncover previously unknown connections between genes, diseases and drugs. 

Many important challenges are facing the widespread adoption of genomic information in clinical practice. Doctor and patient education will be crucial to ensure that clinicians help patients make the most informed decisions.  And difficult ethical and regulatory considerations regarding storage, privacy and consent need community buy-in and public debate. However, the pace of technological change and advancement of medical knowledge are inspiring. Here at Geneix we believe we are just at the beginning of a revolution using genomic information in medicine.  

by Jonathon Marks-Bluth

3 ways that storytelling is improving healthcare and personalised medicine

Healthcare is full of stories – each patient has their unique story often reflected in their bodies and sometimes summarised in a simple medical record. Doctors and nurses have stories too –who their first patient was, what challenges they’ve faced and the moments of elation when they’ve successfully cured someone.

1. Strategic storytelling can change attitudes and behaviors.

Penn State College of Medicine researchers found that medical students ’ attitudes about dementia patients, who are perceived as difficult to treat, improved substantially after students participated in storytelling exercises that made them more sympathetic to their patients’ conditions. And a University of Massachusetts Medical School study found that a storytelling approach has also been effective in convincing populations at risk for hypertension to change their behavior and reduce their blood pressure.

Sound interesting? We suggest reading “Storytelling program helps change medical students’ perspectives on dementia”

2. Patients feel empowered and comforted when they share their stories.

Online patient communities have thrived over the last decade; patients are logging on to share their experiences in the hope that their story could help someone else. This sharing of concerns, challenges and successes brings people, who often feel alone and isolated, together. Storytelling is their common medium; whether they are only starting their journey, reaching its climax or nearing it’s end. Public sharing can be meaningful and therapeutic – for those who muster the courage to tell their story there is great benefit in both reflecting as well as receiving support from the audience as a gift. 

Want to know more? We suggest reading “Storytelling for Health: Doctor promotes intimate patient narratives”

Choice in the NHS: real stories

3. Narrative medicine – knowing how to listen to stories makes you a better doctor.

Effective medicine requires narrative competence, or the ability to absorb, interpret and act on the stories and troubles of others. Illness scenarios from real patients are so powerful that in addition to eliciting empathy they can also entirely alter the way the patient, doctor, and society perceive the condition and care. Honoring the power of these narratives can help doctors to ally with their patients as well as helping them to understand the social context—and stigma—of disease. 

Want to learn more about narrative medicine? Read more here.

Stories and personalised medicine

At Geneix we are interested in the story of personalised medicine.

Reactive to preventative

Tailored treatment has the potential to move the current paradigm from reaction to prevention but this requires deep knowledge of a patient’s story – how does this story usually end? Can I change the ending? When is the right point in the patient journey to intervene? 

The one-size-fits all story of healthcare will change.

Each patient has their own story – personal to them. This story is reflected in their medical record, perhaps with scars or symptoms and even in their genes. Greater understanding of what makes their story unique empowers their doctor to say – ‘this drug is not for everyone, but it is for you.’

Doctors have a story – personalised medicine will help it evolve.

Pharmacogenetics is not yet a standard part of most doctors’ story. In order to make it a valuable and common part we first need to understand, in depth, the current pathway/journey and where personalized medicine fits in. Then we need to put together a new, compelling story, one that has the power to change behavior and attitudes.  Only then will personalised medicine become a reality.

"How bad UX killed Jenny" by Jonathan Shariat

My wife, a nursing student, was sharing with her teacher about how passionate I am about technology in healthcare. Her teacher responded that she thought we need less technology and told a story why she felt so strongly that way. I would like to share this story with you.

Jenny, as we will call her because the patient's name was never shared, was a little girl who had previously been in the hospital ward for cancer for four years and was discharged. Then a while later she relapsed and had to be given a very strong chemo treatment medicine. This medicine is so strong and so toxic that it requires pre-hydration and post-hydration for three days with I.V. fluid. However, after the medicine was administered, three nurses were attending to the charting software to enter in everything required of them and make the appropriate orders, missed a very critical piece of information. Jenny was supposed to be given 3 days of I.V. hydration. But the three nurses, with over 10 years experience, were too distracted trying to figure out the software they were using, they completely missed it.

When the morning nurse came in the next day, she had died of toxicity and dehydration. For two shifts, she had missed her hydration and all because the three, very good nurses, were stuck trying to figure this out…

Note: The large black arrow is from the screenshot I found.

This screenshot I found is similar to the one my wife uses every day. I can't imagine what the UI must have looked like years ago.

Here are a few more I found, dates unknown:

These interfaces were used every day by hospital staff taking care of people’s health.

When most of us design a User Interface, and fail at basic usability, the worst that happens is that our product fails. Yet, when the designers of this system, or even an airplane’s cockpit, fail at their design, there are real physical harms. With so much on the line, you would think these industries would have hired the best designers in the world to carefully craft the User Experience. But they don’t.

Being a designer who is very passionate about what I do, this hurt. In all honesty, I don't think I've ever felt this emotional about any bad design I’ve encountered. I feel angry and sick when I look at that interface above. I start to think about the other stories that have been shared: like an ebola patient being sent home accidently, a pilot accidently plotting the wrong course killing crew and passengers, and so many other stories like them. I even think about my poor in-laws who are 60+ trying to navigate the government sites to pay for their ticket, or find information about government services for their son.

We can’t stand by while people’s lives, health, & rights suffer because of bad design.

There are some real, very serious UX problems out there for us to tackle. For now I don't know exactly how to change it, but here are some practical steps of things you can do in the mean time if you feel the same:

1. Get a job. When searching your next job, take a look at a non-profit, government, healthcare, or other “not as glamorous” areas that need our skills. It might not be designing a chat app for teens but it may save their lives.
2. Redesign it. If you want a redesign project, many of these interfaces could use a facelift. Find one you think needs improved, design it and send it over.
3. Start it up. If you're an entrepreneur looking for a startup idea, look no further. The healthcare system is stagnant and people are desperate for change. Why not jump in and disrupt the system worth billions? Katelyn is doing it.
4. Make a sound. Hate the DMV site, did they mix up your medication order, can’t find how to access something? Send them an email, give them a call.

If you are already tackling this problem. Hit me up, I'd love to help any way I can. I'm @DesignUXUI on twitter. I'd love to hear any ideas people have about this.

This featured article was originally published online here. Geneix received Jonathan's permission to re-post his blog, we believe that the issues he highlights are critically important. At Geneix we place a huge emphasis on User Experience and User Interface design. Creating software that is intuitive, clear, well-designed and easy to use.