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6 minute read

5 pieces of advice for designing successful digital products for those with rare diseases

Here's our advice on creating digital products for rare disease patient populations that will add value and improve engagement.

In our recent Contradiction Conundrum survey with 450 global pharma professionals, we discovered that as little as 4% of digital product launches currently prove successful.

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by Thomas Michalak
17 May 22
  • Rare Disease
  • Digital Product Design
  • User Research
  • Accessibility

Can digital products for those with rare diseases beat these odds of success? Here's some advice that will help you on your journey.

Focus on increasing quality of life and become the reliable solution to their problem

You know and understand the disease — it’s your specialist area, you’ve studied it and talked about it every day, but more than likely you don’t have the disease itself. So the answers won’t be from within. You need to talk to the people who live with it day-to-day. 
Conduct diary studies or patient interviews to collect qualitative information about their experiences. Doing so before embarking on creating a product will allow you to highlight underserved needs. Resist the temptation to focus solely on interactions with your drug or organisation. Explore the interactions that take place around it as well.
The intersection of the medical, social and emotional journeys will highlight your focus areas. Digital health products are designed to improve quality of life, either by increasing convenience or by helping patients better understand and manage their condition. This is where you are most likely to succeed at finding your unique value-add.
We understand that you will have business objectives; such as becoming more favourable among target audiences, learning from one drug to optimise another, or proving to insurance companies that patients are adhering to the programme. These won’t be the patients’ priorities. To avoid them becoming redundant, focus on helping them progress on their journey and become the reliable solution to their problem.

Start recruiting now and prioritise small, repeated research

Recruiting for and conducting user research within rare diseases can be challenging. There will inevitably be low disease prevalence, heterogeneity in the patient population, and a high number of paediatric patients. This means limited access to patients while often requiring more people to cover all cases. Working with children, in particular, will necessitate additional steps, such as obtaining parental consent, or parents acting as proxies between you and the patient — sometimes making analysis difficult. 
So, be kind to yourself and be ready to compromise with your criteria. Little will still be better than zero research. You’ll learn as you go, and uncover new information every time.. It will be much more rewarding to embrace short cycles of research, with a small pool of patients, than to aim for large-scale research from the outset. Focus on incremental improvements to your digital solution: learn, improve, measure, repeat.
Recruiting patient participants
When it comes to recruiting patients, you’ll more than likely need support. Lean on the networks who can help you do this and collect the insights — HCPs, community partners, patient advocates, educators and your medical team. Patients aren’t always willing to work with pharmaceutical organisations, so plan for research incentives and be clear with them on your objectives and what you’ll need from them.
If you haven’t already, make those connections now as the paperwork from the regulatory team will slow you down.
If you can, give back to the community. Your research could highlight behavioural and social traits that haven’t been studied in the past. Sharing your findings back to the medical and patient community will indirectly raise your brand’s profile and support research in rare diseases.

Identify motivations, design prompts and increase their ability to act

You now know what your patients need from you, but wait! You will still have to compete for attention. People with rare diseases have many distractions, just as we all do. Depending on their conditions they will enjoy the same things that you do — seeing friends, a good book, fresh air, Netflix, music, exercise, video games and social such as TikTok. These are all great attention grabbers. Get in line and make every interaction count.

As Foggs' behaviour model suggests, to create engagement and build habits, your product will require that motivation, ability and prompt are all present at sufficient degrees. In simpler words, patients will need motivation to reach out to your product. Your product will need a good prompt to bring them back to it, and have great UX/UI to enable them to act and succeed.

Motivation can be achieved by demonstrating clear progression and rewarding successful interactions. Look at the ‘best in class’ of the digital world, but also at outsiders such as Superbetter and Fabulous. They are good examples of habit-building products that incorporate elements of gamification. You don't have to reinvent the wheel.

Don’t create another burden

People with chronic conditions are more likely to suffer from depression and other mental health challenges than other groups in society. Between their treatment and the stigma they often face, do they really need another reminder of what they can and cannot do? 

Carefully consider how your digital product might interfere with their life. A badly timed notification could drag them deeper into depression or expose them to negative bias.

Tone of voice is also key to connecting with your patients. Medical language may be your ‘go to’ style but it can also be a reminder of their interaction with HCPs. Depending on the context, try to oscillate between everyday language and medical tone.  

Avoid terminologies that have negative connotations or may be triggering — you always want to have a positive impact on their mental health. A colleague with Type 1 Diabetes mentioned how as a teen, she couldn’t bear hearing her doctor mention “complications” at each consultation. Don't become associated with these types of emotions.

Most people with ultra-rare diseases have been through it all. Misdiagnosed, misunderstood and sometimes patronised. They are probably better experts than your medical team and HCPs. Focus on what they are missing — what will help them increase their quality of life and their mental health?

Failing to make your product accessible will result in low engagement

As accessibility expert, Gareth Ford Williams said “Don’t stop at compliance and guidelines, find and embrace the opportunities.” Accessibility within your rare disease area might not fall under the usual digital guidelines. Frequent evaluative research of your product will help you understand the challenges that are specific to your patients.

Accessibility is better integrated when considered right from the beginning. Some diseases will come with sensory or motor disabilities; low vision, hearing loss, sensory processing disorders or hypersensitivity. Show sympathy and build trust by demonstrating your understanding of the patient's needs.

Final thoughts

With enough know-how, the process of designing products for those with rare or ultra-rare diseases isn’t that different to when catering for larger patient populations. It just requires more emotional sensitivity and consideration. 

Focus on helping patients to increase their quality of life, become the reliable solution to their problem, and you should quickly see positive results.


New to Graphite? We’re a digital customer experience agency collaborating with healthcare and pharmaceutical organisations to help them connect more deeply with their audiences through meaningful digital experiences. We work with our clients to create effective digital products for patients and HCPs through a research-led approach to design. 

To learn more about how we can help you elevate your digital products and improve audience engagement, get in touch

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