Why I think rare disease companies are more patient-centric
September 1, 2017 | Patient-centric, Say Communications, healthcare communications, rare disease
Guest blogger Kamlesh Sheth believes companies that specialise in rare disease tend to be more patient-centric.
All pharmaceutical/biotech companies are of course, in essence, patient-centric. However, I feel that companies specialising in rare diseases are often more patient-centric.
It’s important to mention what I mean by patient-centric – that is – directing the company’s resources mainly to the activities which patients consider important. Moreover, ensuring that company’s culture as well processes are conducive to dealing with patients’ needs and being flexible as the needs change.
The company size plays a big role. Rare disease companies are generally smaller, and this can allow individualised focus and dedication. The company’s (real) mission – historically the rare disease companies have started off as focused – often on a single disease – so their mission was to find an effective and safe treatment for a particular disease.
The funding source of specialised companies also comes into play – historically many rare disease companies been funded by certain people or organisations who believed in doing some good for rare diseases community which have been traditionally neglected. The same tends to apply to new specialised companies being set up now. On this note, from my experiences, I think the type of employees who chose to work for rare disease company is often key. Rare disease companies perhaps tend to attract employees who consider themselves too, patient-centric.
Considering processes within companies, larger company processes tend to be much more complex – and this sometimes takes the decision-making away from the grassroots. Perhaps in this way it is easier for smaller, rare-disease companies to be quicker and more adaptable and thus better able to meet patients’ changing needs.
Rare diseases and patient-centricity go hand in hand and need adaptability at each stage – discovery, clinical trials, regulatory, marketing, post-marketing and financing. Perchance the bigger the company, the harder it is to be adaptable at every stage. To be truly patient-centric, the whole chain would need to function as patient-centric whilst larger companies can often look to being patient-centric in post-marketing phase.
In medical training we are taught very early on that paediatric medicine is not just miniature adult medicine – the difference between the two is not just due to size but also due to difference in anatomy, physiology, psychology between adults and children. The same concept applies to the rare disease community. The companies specialising in rare diseases know this, whilst perhaps those outside tend to think of it is as difference in scale – and maybe that is why it can be harder for them to be as patient-centric. I hardly hear the word ‘patient-centric’ in rare disease companies – because it is just natural to them whilst other companies do sometimes remind themselves that they need to be patient-centric!
Author:
Kamlesh Sheth, Director of PharmacoMedics, is a physician with over 25 years of experience in healthcare, including within clinical medicine, academic research, pharmaceutical & the med-tech industry and healthcare entrepreneurship. His interests span orphan and ultra-orphan diseases, medical devices and digital healthcare. He has experience working across the world in Asia, Europe and the USA.
See all our guest blogs here: http://www.saycomms.co.uk/blog/category/guest-blogs/
This content was provided by Say Communications
Company Details
Latest Content from Say Communications
How human differences can affect communication success by Samantha Lynne
DISC Consultant Samantha Lynne examines how human differences affect communication success.
Could hackers threaten your health?
Increasing cyber threats mean medical device providers must now take security matters more seriously, writes our Say technology blogger.
Can we ‘outsmart’ smartphone addiction by using it to develop effective health apps?
Are you guilty of repeatedly checking your phone 24/7? Our new blog explores what makes them so addictive and how understanding this may help us develop more effective health apps.
Why I think rare disease companies are more patient-centric
Guest blogger Kamlesh Sheth believes companies that specialise in rare disease tend to be more patient-centric.
Embracing the demands of the empowered ‘consumer-savvy’ patient by Ann Generlich
Our access to information, which is now constantly at our fingertips and the explosion of new technologies has shifted the buying power to increasingly ‘consumer-savvy’ patients. These are patients who choose...
A Spotlight on Healthcare Communications Advocacy by Alastair Kent
Earlier this year I received an email from Stefi Rucci asking me if I would mind if she nominated me for the Healthcare Advocate of the Year at this year’s...
Am I all grown up yet? My first year in a real, adult, full-time job.
One year at Say Communications has whizzed by. I’m in my early twenties and a recent graduate who has spent the last year working in healthcare communications. Now that my...
Lost for words? Try picturing this… by Mark Spain and Sharon Ombler-Spain
The Two Visual Thinkers' blog about the benefits of recording information visually to engage and educate a variety of audiences.
Take a walk on the wild side!
The Say Comms team are raising money for The Haemophilia Society with a walk-a-thon sponsor them here http://bit.ly/1MtvDO8
Diabetes: Let’s cut the Gordian knot by Debashis Bhattacharya and Kamlesh Sheth
Digital health specialists Aegleio suggest that a culture change is needed to cope with the rise of diabetes in the UK.