There’s more and more evidence emerging that patient groups are becoming key players in medical research and development and the quest for cures.
‘Patients suffering from chronic conditions are playing an active role in health care by sharing medical information and other insights through websites, said attendees at the Massachusetts Biotechnology Council’s annual meeting. Patient advocacy groups are becoming more involved in drug development by funding research projects for new treatments and collaborating with biotech and pharmaceutical firms, said Deborah Dunsire, Millennium Pharmaceuticals’ CEO.’
The Boston Globe article points to the rise of online communities as a significant factor behind these new developments. That’s been very much our experience too. We’ve been using Yahoo Groups and Facebook for some time for our patients to share information, and most recently we’ve been part of the Eurordis Online Communities programme, which allows patients to share information with each other. It’s something I’d encourage all rare disease patient groups to get involved with.
The article also mentions PatientsLikeMe. Check it out – it’s an impressive website. Its stated goals is to enable people to share information that can improve the lives of patients diagnosed with life-changing diseases. To make this happen, they’ve created a platform for collecting and sharing real world, outcome-based patient data (www.patientslikeme.com) and are establishing data-sharing partnerships with doctors, pharmaceutical and medical device companies, research organizations, and non-profits.
On the R&D front, it’s clear that patient groups such as the AKU Society are at the forefront of funding medical research. Raising the funds is hard work, but without us moving the process forward, who else is going to do it?
I seem to have dipped into social media years after everyone else. Last week, I finally set up a Linked In account, and invited all my contacts. Linked In is like Facebook, but for professionals. So it’s a way of keeping in touch with everyone you’ve ever worked with or been in touch with professionally. For me, it’s great, as my memory for names is like a sieve, so I can dig out people’s work profiles, find out who they know, follow them up, etc.
Linked In has a number of rare disease groups. So I immediately joined them and am now getting a steady flow of updates on the orphan drug industry, the rare disease sector, etc. Definitely a useful way of staying in touch and of promoting AKU. So if you’re not on Linked In, give it a go, and then join the rare disease groups and get involved.
If you want to join the Linked In rare disease groups, here are a few of them:
Orphan XChange: http://www.linkedin.com/groups/Orphan-XChange-3181963.
Orphan Pharmaceuticals & Biopharmaceuticals Group: http://www.linkedin.com/groups?home=&gid=1943884.
The first group is an open one (so everyone can see the discussions, even if you’re not a member of Linked In). For the two others, you’ll need to register first.
Give it a go!