Osteolink: Building a Osteolink: Building a CommunityCommunity

#IGNITE // #HKD2 // @Matt_Muir

WHO AM I?

WHAT IS OSTEOLINK?

OSTEOPOROSIS?• A silent epidemic

• 1 in 3 women and 1 in 5 men over 55 in Europe will have osteoporosis.p

• By 2050, the economic burden in Europe stands to increase from €36 billion to €76.7 billion

• In Europe 24% of women and 33% of men who • In Europe, 24% of women and 33% of men who experience hip fracture due to osteoporosis will die within one yeard.

A g th e h i e pp i tel 40% e • Among those who survive, approximately 40% are unable to walk independently and up to 80% are not completely able to perform instrumental activities of daily livingactivities of daily living.

• One of the biggest fears of people with osteoporosis is becoming dependent on others

• Despite this, less than 50% take the very medicines prescribed to lower the likelihood of fracture

WHY A COMMUNITY?• In the Summer of 2009, IOF commissioned a

survey

• Looked at over 1 600 patients and physicians Looked at over 1,600 patients and physicians worldwide across 13 territories (12 Europe and Australia)

• In partnership with GFK and local IOF partners to • In partnership with GFK and local IOF partners to ensure that the questions were right and reflected local sensitivities

The e id• The survey said:

– Physicians underestimate patient concerns about lifestyle, health, dependence, etc

– People with osteoporosis want to be able to get easy to understand information from trusted sources about the condition

– ...and over 50% wanted to be able to talk about it with people like them

WHY ONLINE?(it’s not just online)• Online made sense as many people with y p p

osteoporosis have difficulty attending in-person support group meetings

• and over-50s are one of the fastest-growing ...and over 50s are one of the fastest growing groups online in Europe

• But we knew that it was important not to solely focus on the internetfocus on the internet...

– It’s not about online ONLY

– It’s also a community-based, in person support programme

– It’s about using OsteoLink in-person meetings as a way of helping the older generation get online and start using OsteoLink

OBJECTIVES• Create a community for people

with osteoporosis, their families and physicians

• Create an information-sharing resource

• Develop offline as well as offline Develop offline as well as offline ties

• Ensure patient confidentiality and securitysecurity

NOT AN OBJECTIVE AT ALL

SO THIS IS WHAT WE DID…

1. CHOSE PILOT COUNTRIES• Sweden, Austria, Germany and Switzerland

• We chose these specific countries due to data we had on incidence of osteoporosis and internet penetration in these countries

– Sweden – High incidence of osteoporosis and high internet usage

– Austria – Low internet usage (wanted to see if it Austria Low internet usage (wanted to see if it would work for the pilot)

– Germany – As Austria was a pilot country it made sense to also pilot in other German speaking sense to also pilot in other German speaking countries

– Switzerland – The International Osteoporosis Foundation is based in Geneva and strong Foundation is based in Geneva and strong interest from patient and professional groups there

2. DESIGNED THE SITE• What did we need it to do?

• When I say design, function came first

• Before we engaged an agency to build it we had to Before we engaged an agency to build it, we had to decide exactly what we needed and what was superfluous

• Needed to include• Needed to include

– Profiles

– Forums

– Blogs

– Events

M– Maps

4. WE MADE CONTENT• From initial conversation starting forum threads, to

information sections available on-site, to instruction manuals for users to help them get to grips with the site (all translated into German and Swedish)

• Developed a really strong engagement strategy that • Developed a really strong engagement strategy that would work across our pilot countries, mindful of the audience and the variability in internet comfort

• Supported the creation of national taskforces to take ownership of in-country implementation

5. GOT PEOPLE EXCITED

• We made it easy - Created toolkits for local osteoporosis societies to help them understand osteolink and spread the word and educate their membership, including posters, template emails, etc

• We knew that word-of-mouth would be key in We knew that word of mouth would be key in creating this community – so we made sure we gave all the local societies the tools they needed to help them get ‘buzz’ going on the groundthem get buzz going on the ground

...THEN WE LAUNCHED• Austria & Germany 1st wave

• ‘Soft’ launch December 2010

• Official launch 18th March 2011

• Results:

Total of 1 900 unique users across all corners of – Total of 1,900 unique users across all corners of the globe

– Austria: 42% increase in unique users (371) in th fi t 2 k f l h O t Li k i d the first 2 weeks from launch; OsteoLink viewed in 29 cities across Austria

– Sweden: 27% increase in unique users (339) in the first 2 weeks from launch; OsteoLink viewed in 54 cities across Sweden

– High consumption of materials and high quality user experience, with users visiting multiple areas of the site:

...THEN WE LAUNCHED

• What Are People Doing:

– 45 discussion threads with over 62 comments

– 117 blog posts

In person meetings being carried out in Austria – In-person meetings being carried out in Austria and Sweden

– To date, 108 unique media articles have f d O t Li k d th d tfocussed on OsteoLink and the survey data

– 13 IOF member societies from 9 countries are actively engaged in the pilot programme launched in December 2010.

• Germany and Switzerland are launching soon...

1. SOMETIMES IT’S RIGHT TO BUILD A COMMUNITY

2. FULFILL A NEED

1. BE REALISTIC

http://osteolink.org/ttp //osteo .o g/(http://www.youtube.com/watch?v=JMkLWGReSQc)

Thanks for listening (and, I hope, not booing me off stage)