What I Learnt as a Chronic Disease Patient & Designer: 10 Design Principles for Healthcare
During my +15 years of practice doing interaction, service and strategic design, I have dealt with many different amazing challenges that have impacted both people and companies’ life: very niche-oriented (i.e. a service for bank agents to sell derivatives), widely-used solutions (i.e. an ATM with millions of yearly operations), or unkown solutions for promising new technologies (i.e. mobile virtualization for group events). The thing is that nothing is so important in terms of impact like anything related to health and healthcare. That’s serious, that’s real user experience, real impact.
I must confess that I felt this difference the first time I dealt with a healthcare project (an awkward R&D system for chronic cardiac patients almost 10 years ago), but I completely understood it when I myself became a chronic patient and could experiment and observe first-hand the most serious part of the healthcare system, the one that deals with conditions that put your life in danger.
I was lucky, got over the danger, and started my journey as a chronic patient. The starting point was the moment my doctor informed me about my condition and the strategies to face my disease, aproximately a 20-minute conversation. And that was it: no instruction manual, no bibliography, no call center, no strategy. I quickly realized how uncertain and unknown this journey is for any patient, and started to think about it as a designer.
I tried to learn as much as I could about my condition and how to face it, contacted with other patients who could have more experience than me, and reflected about what was going on. I was lucky because as a designer I was trained to face uncertainty and create solutions with the resources I have. Yes, I thought about designing things from the very first minute, maybe because of the obligation of the cured, maybe because there’s a huge space to design things which could improve patient’s lives, maybe because I needed stuff to help me.
So the disease got me back to life and design, and I’ve been thinking, studying and doing stuff about this since my journey started. I’ve come up with some ideas that could be raised to design principles and help other designers and healthcare professionals.
Patient-centered design.
To properly address the needs of patients we should ensure their presence throughout the whole design process. Designing for patients without the patients would make it more difficult to obtain meaningful products or services, and will likely yield a mediocre or zero-impact solution.
You are dealing with the real thing. Seek real impact and transcendence.
The usual responsibility a designer must have when creating products or services for people reaches its peek of importance when dealing with health issues.
Patients are in a fragile situation that can be tackle with good meaningful rigorous design striving for impact. Bad, mediocre or ambition-less design will result in negative impact thus making their condition worse.
Design for the ecosystem.
Patient-centered doesn’t equal designing only for patients. Healthcare and Healthcare systems work as an ecosystem where all their elements are intrinsically connected with the aim of caring for human beings. Anything you design for a patient can have a direct impact on families, doctors, nurses, pharmacists or attendants. Anything you design for a patient may need the direct participation of families, doctors, nurses, pharmacists,…
Design to empower patients.
Interaction with doctors and other agents of the healthcare system are usually small in time. Even chronic patients spend a few hours per year with their doctors, yet they spend 5000 hours per year doing other stuff. Health and wellness cannot depend on the time spent with their healthcare providers, thus actively taking care of their health in order to improve their condition is key for patients.
An empowered patient will not only obtain better results from their treatment, but will also likely yield a better relationship with his condition and a better life quality.
To empower means giving back control of their health to the patient by facilitating the means to do so. Empowerment cannot be forced and should be facilitated according to the patient’s desired degree. It does not mean ignoring or denying the role of health professionals. Health professionals facilitate healing and co-create health with patients.
Information and strategies for knowledge are the first steps for empowering patients.
In the past medical and health information was not readily available for non-professionals, so people who wanted to learn about a disease or a condition had to go to a medical library. Nowadays health information is available for everybody. There is so much information that even the professionals fail at maintaining the pace in their respective disciplines.
In a scenario where patients are information-devouring people, doctors are pressed to optimize the time they spent with patients, and the interaction between doctors and patients is very sporadic, it is not surprising that users primarily go to the Internet to get information about the knowledge gaps they may have about their condition or illness. The challenge here is not only to identify good sources, but to build a corpus of knowledge that answers the needs that arise.
The healthcare system should provide this information or effective strategies to get this information in order to empower patients.
Design for mind and body.
the Health and well-being do not just deal with the physical or tangible aspect of it, but are rather very much related to human beings as a whole. Physicians know the important role will and attitude play in healing. Designing for healthcare should definitely take this into account, whatever your final solution may be. Soulless technology, cold services, products without services deny the very essence of patient-centered design.
Use emotion, feelings, and humor. Use them properly.
Using emotions in our design process can help reach the people we are designing for, and can definitely help us understand them. When dealing with health issues we even might be dealing with very fragile people, so this emotional understanding and approach will be key to creating meaningful solutions.
The use of emotions or humor during the design process should be used cautiously though. It can be a powerful ally to effectively communicate with our users or to facilitate behavior change, but it can totally ruin the experience if we use them inappropriately.
Design for behavior change.
Design can help people have a better healthier life, and when dealing with health projects you will usually face challenges related to behavior change. Proper use of gadgets, planned intake of medication, get accustomed to new eating diets, and other related challenges will requir you to work from a difficult point of view: you should use design to persuade people to do something which is good for their health, but you should set design’s aim at enhancing experience and ultimately the good powers that make us humans.
Map and use existing resources.
Yes, it’s very obvious and tactical, but the worldwide health systems are in a situation where sustainability is quite a real issue and this basic rule is therefore very important. We may tend to think that innovation and design for change implies embracing the new and forgetting the old. As said, when designing for healthcare we are acting in a complex ecosystem and that ecosystem is full of excellent valuable cutting-edge resources. The need to care about costs and take advantage of available resources are musts in these kind of projects.
Watch out the regulatory environment.
Rasmus Moller Sorensen, a colleague at Designit with great experience in the sector, pointed out to me how the regulatory environment shapes the culture, mindset and decision making of the healthcare stakeholders within the design projects, thus directly influencing the patient experience. This can be a great source of frustration due to the slowness it produces and the limitation to innovative solutions. At the same time the purpose of the regulatory environment is to protect the patient, so understanding and having the regulations in mind during the design process will help designers identify deployable improvements for patients
As an open personal endeavour, I would love to see these ideas challenged, transformed and enriched by those of you interested in this field. Would you like to contribute?
