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How are digital communications and technology changing the rare disease patient landscape? Kanga explores how, using patient-centric digitally led initiatives, healthcare and pharma decision-makers can improve patient treatment pathways and deliver better rare disease care and support.
Over three hundred million people suffer with a ‘rare’ disease, defined as a disease that affects less than 5 in 10,000 people, of which there are over 10,000+ distinct types of Rare and Genetic Diseases known globally, according to Global Genes organisation.
1 in 17 people are predicted to experience a rare disease in their lifetime, with 50% of those affected being children1,2.
However, the hardest fact for patients and parents to accept is that often, treatment is simply not available. NORD (National Organisation for Rare Diseases) states that 90% of rare diseases do not have a single FDA-approved drug or treatment, even though 65% of rare diseases are associated with reduced lifespan3.
One of the key challenges faced with rare diseases is their time to diagnosis. Primary care physicians may see only one case of a particular rare disease in their whole career, and specialists, although growing in numbers, are difficult to access. This means it takes an average of 6 years to get the correct diagnosis4.
Specialist centres and associated tests can also be expensive and a considerable distance away, meaning patients who might not be working and are in financial hardship, or simply suffering from chronic fatigue from their condition, can find the journey gruelling.
The complex and varied symptomology of many rare diseases creates issues for patients and their physicians in managing the condition once diagnosed. As a result of both delayed diagnosis and a lack of adequate treatment options, tragically, some 3 in 10 children with a rare disease will not see their 5th birthday5.
The digital impact for the rare disease community
The way we connect with people and search for information has changed forever, due to the explosion of global online usage:
- 5bn online users worldwide, or 64% of the world’s total population6
- Mobile phones now account for more than 56% of our online time7
- 60% of the world’s web traffic is now consumed on a mobile device7
In addition, technology such as wearables and Telehealth make personal health data readily available to support decision making, as well as offering tailored content to support patients that is often not available for rare diseases. Consequently, rare disease patients and their carers are still finding it difficult to get the help and support they need; patients with these conditions often find they know more about their disease and its symptoms than their local primary care health services.
Over the last 10 years Kanga Health has worked with numerous pharmaceutical organisations to develop digital omnichannel approaches to patient care for a variety of rare diseases, such as Achondroplasia, Neuroendicrine Tumours (NETs), Acromegaly, Münchmeyer disease, Haemophilia, aHUS, PKU, CLN2 disease and many more. We have found three principal areas that lead to success in rare disease programmes:
1. Surfacing crucial insights from patient journeys and stories
2. Creating a community that builds awareness and signposts support
3. Providing digital tools and service to complement therapy
1. Surfacing crucial insights from patient journeys and stories
Quantitative and qualitative research, focused on patient challenges and needs, unlock opportunities for tools, content and services that can address such challenges and help reduce the time to diagnosis. Putting patients at the centre, as experts in their own symptoms and challenges, allows the development of impactful interventions.
Rupert Watts, Senior Strategist at Kanga commented.
“Patients play a key role in the management of their rare disease; they are frequently knowledgeable and digitally active, but not always listened to or heard. Sometimes it’s the unique combination of very common symptoms that can expedite the diagnosis of a rare disease. It’s important therefore to collect a full picture of a patient’s journey, pre, at and post diagnosis, to inform an effective strategy.”
Like with most projects, Kanga recommends spending quality time with your customer, in this case your patients, to qualitatively explore and understand this journey, and the needs that arise throughout it. Underpinned with quantitative surveys and social listening techniques, direct co-creation is a very powerful tool, and very rewarding for everyone involved.
Kanga’s award-winning LivingwithNETs program for Ipsen used this approach, developed through the co-creation of a digital programme designed to support people living with neuroendocrine tumours, or NETs.
Having patients “on the team” from the very beginning, right through to delivery and launch, allowed us to deliver an engaging, impactful, and global solution that won Eyeforpharma’s ‘Most Valuable Patient Initiative’ award for its approach and implementation.
2. Creating a community that builds awareness and signposts support
For patients with a rare disease life can be lonely, and it is unlikely someone who also has the condition lives nearby.
Digital channels remove this barrier of distance and connect people in many ways, but it can be a double-edged sword; as a patient in one of our workshops once said, “Google can be both your best friend and worst enemy.” On the one hand online information, social media communities and patient bloggers can be a lifeline for people isolated by their disease and looking for answers, empathy, and support. However, misleading or alarmist content can be disastrous; frauds and untried remedies can play on people’s fears and lead to dangerous, incorrect, or inadequate therapy.
Hence the need for pharma companies to create trusted, useful and connected solutions, in partnership with Patient Advocacy Groups, that are credible and stand the test of time.
Kanga has been working on connected solutions for clients to simplify patient journeys, joining the dots through compliant and relevant content and services tailored to their specific needs, geography, and condition. We look to connect like-minded patients to support each other, alongside providing relevant and reliable sources of information to patients and their caregivers, to help them better manage their condition.
An example of one such ecosystem, in development for a leading biotech’s rare disease business, ensures patients are supported, connected, and heard. The solution is a modular, experience-based platform developed using a variety of design and technology best practices.
As well as ensuring each website developed within the ecosystem is intuitive, engaging, and impactful for patients and their caregivers, internally it must strengthen the company’s digital infrastructure, creating a cohesive and robust approach that sets a new standard for the development of their websites globally, whilst delivering cost and time savings to markets and functions.
3. Providing digital tools and services to complement therapy
Digital, care-based support can enhance the patient journey and improve outcomes. Many of these life-long conditions often need lifestyle, as well as pharmaceutical, interventions.
In rare disease, companies can make a real difference by focusing on the patient’s needs throughout their journey with the condition. Non-pharmacological support and interventions which may improve symptoms, support the patient with their medication and other treatments, and enable the patient to achieve their life goals such as working, studying, family or leisure activities, can really help.
‘Acromunity’, supporting acromegaly patients, is an online solution created with patients for patients. Indeed the name was chosen by patients themselves, as often people with this condition are reluctant to go out in public and crave friendship and a sense of community.
The website’s design, content and services, co-created with patients and doctors, include:
- Photos to help diagnosis
- ‘Ask an Expert’ feature
- Infographics detailing the acromegaly journey and what to expect
- Practical tips and management of symptoms
As the solution was developed with patients and healthcare professionals, the insights helped us to tailor the digital experience with the purpose of delivering content and tools for patients, families, and carers ongoing with diagnosis, support, and treatments.
The patients involved also agreed to become part of the content creation process too, answering FAQs about their disease in a series of short videos that help empower patients (or those with symptoms) to reach out to their doctors or associations for help.
Undoubtedly, the ability to wrap services and support around therapies and treatment can help to deliver better patient outcomes, drive differentiation, and strengthen patient HCP relationships.
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If you want to discuss any of the points raised or projects above, or if you have your own brand or therapy area that needs some digital inspiration, please get in touch info@kangahealth.com
References
- Genetic Alliance UK – Rare disease.org available at: https://www.raredisease.org.uk/what-is-a-rare-disease/
- My Medical Score: https://mymedicalscore.com/rare-disease-statistics
- https://globalgenes.org/#rarediseasefacts
- https://www.gesundheit.gv.at/krankheiten/seltene-krankheiten/wissenswertes.html
- https://globalgenes.org/learn/rare-disease-facts/
- Statista (2023) https://www.statista.com/statistics/617136/digital-population-worldwide
- Oberlo (Nov 2022) https://www.oberlo.com/statistics/mobile-internet-traffic
#PracticalDigitalTransformation #DigitalHealthcare #RareDiseaseDay #Digital #NeuroendocrineTumours #Acromegaly
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Kanga Health Ltd
PRACTICAL DIGITAL TRANSFORMATION
Kanga is a global digital pharma agency, providing end-to-end services, to help health and pharma organizations with their successful digital transformation. From strategy to development, implementation and beyond, our experts guide pharma teams and customers every step of the way to deliver projects that are always value-driven, on time and excellence derived.
Our team is a rare breed of pharma and multi-channel experts, therefore acutely aware of the intricacies and challenges of the unpredictable healthcare industry.
Customer centricity is at the core of everything we do. Kanga involves Patients, HCPs, Carers and other stakeholders, using co-creation techniques to develop truly relevant content, and solutions that work every time.
Kanga is your partner for success – helping you tap into a wealth of digital opportunity and play a meaningful role in the future of healthcare.
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