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.

Can suicide be linked to adverse events?

We see billions of pounds each year spent on pharmaceutical research, and over the last century the number of available drugs has rocketed. Many people now take several medications at a time – some for physical conditions and others for mental health.

We can define a drug as being ‘a medicine or other substance which has a physiological effect when ingested or otherwise introduced into the body’. When we introduce a drug into the body, it interferes with the way we work. A lot of this interference is positive, and a round-about way of saying ‘it makes us feel better’. But it’s not all good news. Sometimes this interference can also be negative, and the term ‘adverse effect’ is usually coined to describe it.

Adverse effects to medication are frequently ignored, mostly because many of them are unnoticeable or minor, such as a rash, plus the relief usually outweighs the consequence. Many of these adverse effects are easily recognised and can either be treated by a small adjunctive therapy or stopping the original treatment all together. However, these adverse effects are far more complex in psychoactive medicine; those which work on the brain. The delicate chemical balance in the brain is the target of a lot of drugs to treat conditions ranging from Depression and Schizophrenia to Parkinson’s disease. When adverse effects happen with these drugs it can be harder to identify them because many of them are similar to the original disease symptoms. Furthermore the adverse event, especially if psychological in nature, can be extremely hard to identify and link directly to a medicine as a side effect. 

The truth is, for many of these psychoactive drugs, they are re-dressing a chemical imbalance in the brain itself. For example, Citalopram is an SSRI (Selective Serotonin Reuptake Inhibitor) which is though to inhibit the reuptake of serotonin in the synapses of the brain, making the effects of serotonin last longer. It is used to treat depression amongst other things, which can be caused by a reduction of serotonin in the synapses. 

However, SSRI’s have an extensive list of possible side effects, including psychiatric effects. These range from minor reactions (such as confusion, dizziness and fatigue) all the way through to suicidal indentation. This is further complicated by the occurrence of drug to drug interactions which have also been linked to deepened depression, self-harming tendencies and suicide.

 When high profile cases of suicide appear in the media they are often celebrities with complex medical, psychological and recreational drug usage. It can be hard for the experts, as well as the public to grasp the cause but could drug side effects or interactions play a greater role then we realise? 

Awareness of the issue is key to understanding how to overcome it. If there is a link between medication and suicide, it needs to be studied and properly addressed.

Charities such as APRIL (Adverse Psychiatric Reactions Information Link) have been set up for this exact reason. Their aim is to create awareness that many every day medicines and anaesthetics can induce psychiatric adverse reactions (ADRs) or withdrawal effects including depression, anxiety, insomnia, agitation, self harm, suicidal thoughts and actions, or violence towards others. We support APRIL’s work and others who are working to help the wider population understand the problems and benefits associated with the medications we take.

What's new with The Genome Project?

If you read the news today you would have read about how the 100k Genome Project, headed by Genomics England, is making huge strides in it's mission to make Britain the world leader in Genomic Medicine. 

With the Prime Minister today announcing that a further £300 million will be pledged towards the project - it seems that all the financial and political backing is there to ensure that Genomics England is a success. With financial backing in place the project has also revealed it's planned partnership with American genetics giant, Illumina, for sequencing and the creation of a new £27 million ‘Genome Campus’ in Cambridge funded by the Wellcome Trust.

Finally there is an open invitation to organisations by the NHS England to become ‘Genome Centres’, in a big push to make a success of proposed ideas.

Once sequencing is complete, the data will need to undergo bioinformatic analysis to identify genotypes and then interpreted it for clinical utility. We are looking forward to finding out who the clinical partners will be for the interpretation of the data obtained. 

These are very exciting times for the links between digital health and genomics… stay tuned!