Bringing together patients' perspectives on eHealth and mHealth

What’s In A Name?

Our parent, PatientView, has listings of around 40,000 contacts in patient organisations for diverse therapy areas across the world. The database is a monster, requiring constant checking, updating and additions. What it brings home is that now, more than ever, patient groups and health charities must have names that stand out.  

In a digital world, it’s particularly challenging, because you could argue that the best and obvious domains and social media names have gone. Yet, even now, we come across patient groups who still find creative names you just can’t forget. This blog celebrates their brilliance.

Bald Girls Do Lunch

Bald Girls Do Lunch is a US-based non-profit organisation dedicated to improving the quality of life for the women living with alopecia areata.

The name emphasises socialising is key:

“…bringing them together at lunches, dinners and events where they can meet others who are living with autoimmune disease (often for the first time in their lives), we strive to enhance self-esteem, self-confidence and sense of community while also increasing their capacity to effectively manage the various aspects of living with alopecia areata.” – www.baldgirlsdolunch.com

Mission Remission

Mission Remission is a site for peer-to-peer support, aiming to make cancer survival “less isolating and more empowering”. Its tagline, used on the group’s emails, is refreshingly direct:

“Remission isn’t just dodgy veins and a few check-ups”

It is run by patients, for patients, with volunteer specialists ensuring that all information is safe and appropriate.

The site’s online community shares experiences and tips across a range of areas including:

  • Coping psychologically
  • Handling long-term physical effects of cancer
  • Taking control of your life after treatment
  • Dealing with others.
Limping Chicken

Although Limping Chicken sounds like something straight out of Monty Python, it is a popular UK-based blogging site for the deaf community.

Sadly, the name is not completely random. It goes back to a notorious BBC 2012 documentary following the lives of five deaf teenagers. One of these was a student starting at university, relying on a hearing ‘notetaker’ to make lecture notes. The student was more than a bit surprised when the notemaker apologised that she had to leave because “her chicken was ill at home, and that it had a bad leg, and it was limping.”

This comment went viral in the deaf community, resulting in parodies, spoofs and videos. The blog site realised that the name `Limping Chicken’ would be easy to remember, and critically, easy to sign.

Reinventing names

Names of patient organisations are hugely important because they get right to the heart of the identity of the patients themselves. Patients are rightly outraged when labelled with terms now offensive or inaccurate. 

This becomes quite challenging when your group or charity has been around for many decades. 

For example:

  • In 1994, The UK Spastics Society became Scope, a decision largely driven by the disabled community, recognising that ‘spastic’ was becoming a term of abuse.
  • In 2011, the Royal National Institute for Deaf People (RNID) changed its public identity to Action on Hearing Loss because they feel it “makes it clear that, as we enter our second century, we still urgently need to reach those with hearing loss, those at risk of losing their hearing and those who don’t realise how isolating hearing loss can be.”

Sometimes, all that’s needed is changing the smallest of words. When I volunteered for the RNIB in the 80s and 90s, it was the Royal National Institute for Blind People. Since 2002 it’s been the Royal National Institute of Blind People. A tiny change, but hugely symbolic. A name that is about empowerment, inclusion and membership, rather than a feeling of patients who need things done for them.

We’re on the lookout for the next limping chicken crossing this digital road. If you come across a great name for a patient group, health charity, campaign, app or blog, please tip us off using the comments link. 

NEXT STEPS

Visit Bald Girls Do Lunch at…

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Visit Mission Remission at…

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Visit Limping Chicken at…

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