Personalised Medicine

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. 

ESPT 2014. From implementation to realisation

I’ve just returned from the European Society of Pharmacogenetics and Theranostics conference in Santorini. The event bought together the greatest minds in the field from all over Europe, with a few international counterparts too. Over my four days amongst them I realized that this community had the power to drastically change the way we prescribe – shifting healthcare into a future. Barely a week goes by without another landmark trial or innovation, the dream of personalised medicine is within our reach; all we need now is greater collaboration and a stronger collective voice. 

At ESPT last year the focus seemed more on the possibilities of pharmacogenetics (PGx) and the recent academic developments. There were of course a handful of critics who deemed the evidence as weak and the routine use of this technology as decades away. This year there was a noticeable shift in thought – the majority had moved on from verification to utility - the talk was now all about implementation. Examples were shared by countries who were already using genetic data in clinics to inform and guide prescribing. Denmark, Italy, Austria and Holland lead the way, discussing how genetic testing was being routinely carried out and used for clinical decision by pioneering physicians. Prof. Ivan Brandslund from Denmark needs a special mention, as the implementation there sounds extremely progressive. 

Prof. Ron H.N. van Schaik, chair of the ESPT Scientific and Clinical Implementation Division, announced the launch of the European Pharmacogenetics Implementation Consortium (Eu-PIC). An organization dedicated to the creation of a European best practice network. Such a network could accelerate translation and implementation of PGx, an incentive that Geneixis hugely in favor of.

The final session on Saturday was a discussion for the floor to share ideas on what we believe the next steps are for adoption and implementation. Dr. Graham Beastall President of the International Federation of Clinical Chemistry and Laboratory Medicine (IFCC) floated the idea of approaching patient groups and empowering them to advocate and drive PGx testing. The example of HLA testing in HIV patients before Abacavir is prescribed generated great interest. 

While I agree that patients are key stakeholders I believe that adoption could be achieved without patient pressure and rather through greater collaboration and a single strong community voice. We need to develop a shared language, a common vocabulary, one that we can use when communicating PGx to all stakeholders. This will ensure we all give a consistent consolidated message to everyone from patients to policy makers to physicians. The later are key in adoption, we need to bring them onside and ensure we clearly communicate how PGx medication could support them and enhance their practice. To access this important community it’s important to remember that physicians alone cannot drive adoption; the hospital board has to be considered too. When approaching each of these stakeholders we must remember what the true promise of PGx is for them – doctors need validity, which can only be gained with evidence of patient benefit while hospital decision makers want to talk hospital admission rates, cost benefits and safety. I left Santorini feeling inspired and more confident that ever about the bright future of PGx. Everyone I spoke to reinforced my belief that Geneix is creating powerful and necessary solutions – ones which will drive adoption and galvanize implementation. Our vision is aligned with the progressive forward thinkers of the ESPT network, and as part of this community we will ensure that in time the talk has shifted again - to how the dream of personalized medicine is our new reality.

FIVE Fundamentals Of User Experience Design

1.     Be clear
"Delight the eye without distracting the mind." - Google

Ensure that your interface has ‘preferred actions’ so the user always knows what they should/can do. Design for the majority of your users and let extra functionality be discovered as needed (e.g. through hover controls, information layering) without delivering everything all at once.

Use visual cues, as little copy as possible and always provide defaults (undo/redo/home).  Promote visual clarity with well thought-out information hierarchy so the most important information is always clearly displayed and accessible with no effort.

Our flagship product, Interact, contains huge amounts of detailed and complex information (drug and gene). However it’s clear interface and strong visual cues ensures that users are at no point overwhelmed with content.

 

2. Be consistent
"Things that look the same should behave in the same way, and an action should always produce the same result." - IBM

A consistent design is actually simpler for users because it re-uses components, behaviours, colours, and aesthetic to reduce the need for users to rethink.  Users are already familiar with many of the components used throughout apps and the web, so complying with these patterns will make the system simpler and clearer right from the start. When a design is consistent and clear it relies on recognition not recall – reducing a users memory load and the amount of ‘work’ they’re expected to do. It’s important to keep interaction results the same (manage users expectations) and encourage exploration by keeping key elements predictable. 

When building Interact we made extensive use of colours that we knew users would recognize and associate with. In reliance on this recall our app communicates it’s most important information visually so users simply have to scan the page.

 

3.     Give users control 
"Allow users to personalise their experience. People love to add personal touches because it helps them feel at home and in control. Provide sensible, beautiful defaults, but also consider fun, optional customisations that don't hinder primary tasks." - Google Android

When people feel out of control, they simply don’t have a good time. This doesn’t mean that you can’t surprise people; it means that users need to feel like they are always able to take the next step (or bow out) at their request. Some users will be experienced and skilled, they will want more control over their journey (car driver) than a novice or casual user (train passenger) who may prefer to feel guided and safe - see Theo Mandels car vs. train analogy. Good UX designs accommodates for both and recognizes that users deserve the right to change their minds and take the car one day and the train the next.

Control can come from several places, such as allowing users to dictate the pace, path and level/detail of detail (choosing to ‘deep dive’ for more information). It can also come from interface customization; personalizing something for you – even a little change like picking a colour – helps users to feel more in control. Provide meaningful paths and exits so users feel the design is forgiving also helps them feel more in control and able to navigate away from a linear user journey.

As mentioned above Interact contains a wealth of complex information. A casual user can quickly use the app to check for a drug interaction within seconds. Likewise they can also use the app to customize doses etc., compare and explore several drugs simultaneously, read in-depth information about interactions or access entire drug monographs. Both users will follow the same steps but the their journey and the depth of the knowledge gained will be entirely different. 

 

4. Make conversation
"Use real world behaviour and user testing to aid the development process." GOV.UK

UX is a conversation. As UX professionals we are creating a dialog with users in which the goal is to find out how we can best help them do what they want to do. Therefore, UX becomes a service that is constantly reacting to the changing needs of our audience – it is not a one off product. The conversation is both how we deliver and how we find out how to make it better. 

Since day one we have worked closely with our users, responding to feedback and implementing suggestions. When Interact is released we will continue to react to the changes needs of our users and the environments in which they operate.

 

5. Be friendly 
"Delight me in surprising ways: A beautiful surface, a carefully-placed animation, or a well-timed sound effect is a joy to experience." - Google Android

Users should be able to relax and enjoy exploring the interface of any software product. Even industrial-strength products shouldn’t intimidate users so that they are afraid to press a button or navigate to another screen.

It’s also critical to establish the proper tone of voice in messages and prompts. It is important to assign no blame for errors or problems. Poor message terminology and tone encourages users to blame themselves for problems that occur, effecting their confidence and experience. Constant alerts that bombard the users can also lead to user fatigue.

Interfaces today and in the future must be more intuitive, enticing, predictable, and forgiving than the interfaces we’ve designed to date. It’s time we moved onward past user-friendly interfaces to user-seductive and fun-to-use product interfaces, even in the healthcare environment.