300 million people live with a rare disease around the world. Due to the rarity of each individual disease, and over 6000 rare diseases globally it is a challenge to provide patients, families, and carers ongoing with diagnosis, support and treatments.
Primary care physicians may only see one case of a particular rare disease in their whole career. Expertise and information therefore is usually limited, leaving rare diseases at the back of the queue for funding or marketing programs due to the perceived ROI and uptake.
On Rare Disease Day 2020, Kanga Health (a global digital pharma expert agency) looks at how digital is enabling brand healthcare and pharma decision makers with the delivery of cost-effective and ROI-driven communications both to HCPs and patients with rare diseases. Exploring how patient-centric digital strategies and meaningful multi-stakeholder partnerships can inform drug and disease support and commercial success, with a direct improvement to patient diagnosis, and ongoing patient support.
The healthcare landscape is changing…
The customer journey to delivering and receiving support (HCPs vs. patients) is changing. In 2014, we witnessed the tipping point where more HCPs became ‘digital natives’ than not, with current levels estimated at 67% (LBi Health/BMS).
HCPs spend more time seeking information on digital channels than traditional ones presenting opportunities in rare diseases, as few companies are active in the digital space, even though HCPs expect to find content and receive digital communications.
The life of a patient with a rare disease can be a lonely one. By definition, if you have a rare disease it is unlikely someone lives near you who also has the condition. Google can be both your best friend and worst enemy. Online information, social media communities and ‘patient thought-leader’ bloggers can be a lifeline for people isolated by their disease who need to get questions answered and seek empathy and support. 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.
There is an important role for credible, reliable and easy to find information that is based on science but also accessible, supportive and helpful to patients. Companies can have an important role to fulfil as the patient’s ‘trusted friend’, provided they really listen to patients and HCPs and co-create with them. This is where Kanga can help.
A digital toolkit for success
Kanga works with global pharma companies across multiple therapy areas and diseases, including oncology, endocrinology, immunology, gastroenterology and neurology. Specifically, within the world of rare diseases, Kanga have developed patient-focused digital solutions within growth disorders, oncology and neurology.
Across all our work, we make sure EVERY solution, asset or tool, meets the needs of the patient, alongside other users. It is so important, we opt to co-create with users, involving patients, HCPs and Carers from the very start and throughout our projects. This not only helps to develop the most valuable outcomes, but it makes patients feel valued too. Patients need to know they are more than just a number! Our approach truly embeds them into the decision-making process and enables companies, with our guidance, to deliver outcomes that really work.
Two great examples are of our work for rare diseases (for Ipsen) are:
- ‘Living with NETs (LWN)’, supporting neuroendocrine cancer and carcinoid syndrome. This is a complete support solution for people living with a rare cancer. At the time of launch, there were around 180,000 diagnosed cases of neuroendocrine cancer globally, excluding the US. To date, we have had over double this number of unique visitors.
The solution won the Eyeforpharma “Most Valuable Patient Initiative” award, singled out for the “way the team collected patient insights, identified unmet needs and provided individualized support” and also the “website and its content were easy to navigate and are a great example of providing support to patients throughout their treatment journey in a personalized way”.
- ‘Acromunity’, supporting acromegaly patients. This is a site and a series of content providing information for patients with a rare growth hormone condition with an incidence of 3-4 per million per year. To date we have reached over 100,000 unique visitors. https://www.ipsen.com/ipsen-launches-acromunity-com-a-website-designed-with-patients-for-patients/
Both were developed with patients and HCPs helping to tailor an online experience with the purpose of delivering content and tools for patients, families, and carers ongoing with diagnosis, support and treatments.
The patients involved in both of these solutions agreed to become part of the content too, answering FAQs about their disease in a series of video content, to help empower the patients (or those with symptoms) to reach out to their doctors or associations for help. https://ronnyallan.net/2016/10/26/living-with-nets-patient-power/
If you want to discuss any of the marketing efforts or projects above, or if you have your own brand or therapy area that needs some digital inspiration please feel free to get in touch firstname.lastname@example.org.