The Value of Openness: The PatientsLikeMe Blog

This year PatientsLikeMe was the major sponsor of the 18th International ALS/MND Symposium held in Toronto, Canada. Research scientist Paul Wicks, marketing officer Lori Scanlon, and community liaison Emma Willey were all in attendance to tell people about the site. We first started telling the ALS/MND community about us at the Yokohama conference in 2006, with Paul walking doctors and researchers through the site on a laptop. This year we decided to invest more in setting up an eye-catching booth which had people coming up to us to admire our space-age gadgets as much as to see the site!

Over the course of 4 days we spoke to hundreds of conference delegates. Many doctors had said that they had been invited to join the site by their patients and were curious to find out more. We were able to use our new Google Mapping feature to show them where their local patients were, which had people queuing to see who they knew that was registered on the site! Several researchers were also interested in forming collaborations and we hope to be able to get our users involved in more research over the coming year.The most common questions people had for us were:

- Do people really want to know about their progress?: Our answer would be that PatientsLikeMe allows them the option to find out if they choose. Many professionals feel that it is their responsibility to protect patients and carers from distressing information. However, we believe that everyone’s information-seeking preferences are different and by giving people the choice we are empowering them.

- Don’t you get a lot of people pushing their products?: We have a few ways of preventing this. First there is our community of members, who are a very switched-on group. If anybody posts something suspicious or overtly commercial we normally hear about it in a matter of minutes and are able to respond appropriately. Secondly we have a clear emphasis on sharing what has been helpful, but we ask people not to try and persuade others to change their regime; that is a choice for them to make. Finally, by giving patients the tools to look at each other’s outcomes, we encourage people to put their data where their mouth is. If “supplement x” has worked wonders for them, we would encourage them to enter in their data so other people can see for themselves.

- What does this cost patients?: Nothing! Because our business model involves partnering with pharmaceutical companies to encourage their participation in disease communities, we don’t have to rely upon advertising, spam, or subscription fees to sustain our activities. We feel that being a neutral space from the perspective of industry and non-profits is best for everyone.

- Can we tell our patients about this?: Sure! We’d like nothing more. In the new year we’ll be distributing leaflets to all the ALS/MND clinics we can find so that they can invite patients and caregivers to join us.

On the penultimate day of the conference, one of our research team, Paul Wicks, gave a platform presentation describing PatientsLikeMe and presenting some of the research that’s been carried out on the site.

His talk was met with an enthusiastic response and was identified as a highlight of the symposium by several delegates. Click the video below to hear Paul take you through his eight minute presentation.

Without doubt, one of the most inspiring parts of any conference is meeting up with our users, and we were thrilled to see a few of them at the conference. We heard how PatientsLikeMe helped them understand more about their condition, meet other users in their area, and made them feel like they were a part of the fight against ALS/MND. Next year the conference is in Birmingham, UK, and we look forward to having lots of ground-breaking research to show off there!

It’s been six months since we launched our first newsletter, and a lot has happened at PatientsLikeMe in that time. With the holiday season now upon us, we thought we should give thanks for the amazing strides made in all our communities. There is power in numbers, as they say, and we are grateful to every new member for increasing our ability to effect change.

ALS Community
We are proud to announce that our flagship ALS community has grown by nearly 50% in the last six months to 1,450 patients. We’re even prouder that it now attracts the equivalent of 10% of all newly diagnosed ALS patients in the US. To share what researchers can learn from this model for openness, our own Paul Wicks, PhD, will present a lecture on social medicine at the upcoming 18th Annual Symposium on ALS/MND, which we are co-sponsoring. Please stop by the PatientsLikeMe booth if you’ll be there!

MS and Parkinson’s Communities
Launched in late spring, our MS and Parkinson’s communities have also experienced staggering, if not meteoric, growth. We are delighted to report that our MS community recently hit a major milestone when it surpassed the 2,000-member mark(!) while our Parkinson’s community now has more than 800 members. We welcome and thank all of these new members. Please keep inviting others to join! This vast pool of shared data is what will help make PatientsLikeMe a juggernaut in MS and Parkinson’s research.

HIV Community
The PatientsLikeMe family continues to expand as our newest community, HIV, began accepting charter members last month. We expect to formally launch early next year, and we look forward to growing this fledgling community to its fullest potential. Please help us in this effort. If you know anyone affected by HIV, please invite him or her to join PatientsLikeMe today.

PatientsLikeMe attended the inaugural Health 2.0 conference in San Francisco. Congratulations to Matthew Holt and Indu Subaiya for putting on a great show. Ben Heywood participated in the Social Media panel along with other great health 2.0 companies, DailyStrength, OrganizedWisdom, Inspire, MedHelp, and Sophia’s Garden. The high quality of each company’s offering ensures that patients will continue to have many destinations to share their health situations, get support, and even answers.

At the end of the social media panel, the 500 conference guests were asked which company they’d choose if they were an e-patient. PatientsLikeMe received 39% of the votes. While we appreciate this high praise from our peers, our mission is to positively effect patient outcomes through our site and to improve healthcare overall. We’re honored to be a part of this movement with other leading companies in the space.

PatientsLikeMe, the leading treatment and outcomes sharing website for people with life-changing diseases, is proud to announce its first scientific poster award. Today, at the 20th anniversary meeting of the British Neuropsychiatry Association (BNPA), Dr. Paul Wicks, resident researcher at PatientsLikeMe.com received the Association’s first prize for the best poster presentation, entitled “Telesocial medicine for neurological disorders: PatientsLikeMe.com”.

“This is the first time that PatientsLikeMe.com has been formally presented at an academic conference and it’s great that the site has received the recognition it deserves,” says Dr. Wicks. “Over the two days of the conference I’ve spoken to neurologists, psychiatrists, and patients, all of whom were enthusiastic about the concept and interested in the development of the site as it branches out to include conditions as diverse as ALS/MND, Parkinson’s disease, and multiple sclerosis.”

The poster illustrates the power of PatientsLikeMe and how it can help patients with neurological disorders take control of their diseases and improve their understanding and knowledge of treatments.