9 posts tagged “openness philosophy”

Celebrating MS Awareness Month:
Interview with Accelerated Cure’s Sara Loud

Posted March 25th, 2010 by

It’s MS Awareness Month and we’re excited to bring you information from our nonprofit partner, Accelerated Cure Project for MS.  We briefly mentioned the Accelerated Cure Repository in our blog interview with Devic’s patient, Gracie.  We thought we’d take the opportunity to ask The Accelerated Cure Project for MS a bit more about the repository and what it means for MS patients.  Here’s the interview between Molly Cotter (PatientsLikeMe nonprofit development) and Accelerated Cure’s Operations and Repository Director, Sara Loud.

2271 (Molly) What is the Accelerated Cure Repository?
20091102-acp-sloud-0015 Accelerated Cure Project, (www.acceleratedcure.org), is a research-focused national nonprofit whose mission it is to cure MS by determining its causes, triggers, and disease mechanisms.  Our main resource to accomplish this is our Repository, a collection of biological samples and data collected from people with MS and related demyelinating diseases.  We collect these samples and data at our 10 collection sites across the country and then distribute them to scientists, both academic and commercial.  The Repository is a critical resource to the research community.  We’ve taken on the burden (time, cost, complexity) of sample and data collection so that scientists can spend their time and money doing their most important work, the research.  The Repository provides the research community with a large (samples from nearly 2,000 people so far!), well-characterized, high-quality set of samples and data.
2271 (Molly) How can it benefit MS patients?  Are there any other patients that can participate?
20091102-acp-sloud-0015 (Sara) While there’s no direct benefit to an individual who participates in the Repository (we don’t offer any treatment, for example), the Repository offers the potential of a tremendous benefit to those with MS and their families.  The scientists who are using our samples are working on developing better diagnostic tools, learning more about treatment effects, and making great strides into understanding what triggers MS.  Enrolling in the Repository is a terrific way to participate in research.We’re not only enrolling people with MS but also folks with other demyelinating diseases such as Neuromyelitis Optica (NMO), Transverse Myelitis (TM), Optic Neuritis (ON), and Acute Disseminated Encephalomyelitis (ADEM).  There is so much to be learned by studying these diseases in conjunction with each other.  We are also collecting control samples from family members who don’t have one of these diseases.  We enroll parents, children, siblings, and even spouses.  The whole family can be involved!
2271 (Molly) As we state in our Openness Philosophy, we believe openly sharing data is a good thing.  How does the Repository encourage this concept?
20091102-acp-sloud-0015 (Sara) At Accelerated Cure Project, we wholeheartedly believe that collaboration and open sharing of information are key to solving the puzzle that is MS.  Our Repository is open access meaning that anyone can apply for samples and data.  We’re currently supporting more than 30 studies worldwide with our samples and/or data.  One of the requirements for access to the Repository, however, is that the researcher must agree to return their research results back to us at Accelerated Cure Project for inclusion in our database and sharing with other researchers.  This means that researchers who have never met or spoken with each other are learning from and building upon each other’s research.  This type of information sharing is likely to be critical to curing MS.
2271 (Molly) How is the data being used that is collected from the repository?  Do patients have access to the research results?
20091102-acp-sloud-0015 (Sara) The data is being used in a number of ways.  Scientists using our samples nearly always request supporting data to enhance their research.  We’ve also had requests for just data, no samples, from scientists who are doing data mining, looking for correlations and new findings on what may trigger MS.  Don’t forget that these scientists are not only studying the data that we’ve collected from participants but also the data that has been generated by other scientists studying the samples.  We anticipate supporting many more projects relating to analyzing the vast amount of data collected!Because the samples and data collected from participants are stored anonymously, there’s no way for us to report back individual research results.  We do report regularly on the research being done using the Repository on both our web site and in our quarterly newsletter.  We are always very excited to update everyone with the new findings that come about through the use of the Repository.

I hope that people contact me to learn more about participating in the Repository. Contact me any time.

2271 (Molly) Thanks so much, Sara!

Should You Share Your Health Information Online?

Posted October 24th, 2008 by

Openness.  Privacy.  These philosophies stand in direct opposition in the question of which is better for consumer health.  Should people be open with their health information or private?  Certainly there are times for both, right?


Not according to some privacy advocates.  On October 22, 2008, Deven McGraw from the Center for Democracy and Technology cited a survey on their blog entitled “National Dialogue on Health Information Technology and Privacy” that 67% of respondents were either “somewhat” or “very concerned” about the privacy of their personal medical records.  A glass half-full perspective would say that one-third of respondents think openness is appropriate, at least somewhat.  McGraw summed up the post this way:

Without appropriate protections for privacy and security in the healthcare system, patients will withhold information from the health care providers – or decide not to seek treatment – because of fears about how their personal health information could be misused. Ignoring concerns about privacy – or inadequately address[ing] them – will significantly threaten public trust in these new e-health technologies, and in our overall healthcare system.

It may be a stretch to say make a blanket statement that patients will decide not to seek treatment based on fears about how their information would be used.  Let’s hear from patients themselves.  We asked members of our Multiple Sclerosis community to respond to this statement in our forum.  Here are excerpts from some of their responses:

1. I would withhold info or not seek care due to privacy concerns.  I was thrown into MS and was very forthcoming with everyone, including my former employer.  If I had to do it all over again, I would keep my mouth shut, with the exception of telling my family.  I like the anonymous nature of PLM.  I don’t include my full name so I’m comfortable in noting my dx and symptoms.

2. unfortunately, there really isn’t enough privacy anymore. I just figure to heck with it. If they really want my info they’ll find a way to get it anyways.

3. I believe the benefits of participating in a health care system using online records outweigh privacy concerns. What privacy? Given the resources, anyone can find out anything about my background.

4. Like many, I have mixed feelings about this.  Working in healthcare, I know that there is a HUGE advantage to having all your medical info readily available to any provider.  I can think of many times where I’ve had a patient who couldn’t tell me their history, or what meds they’re taking, and struggling to figure out what was going on.  On the other hand, I also know, from personal experience, that having unauthorized people get access to your health info can have major negative consequences.

5. That [online medical records is] inevitable is probable,but I still believe that we should have the right to say who knows what,when,and if about ourselves.Its about freedom of choice,will and about human dignity!

6. My medical records are open, wanna see? Just look at PLM!!!!!

What a popular question!  We got dozens of responses in less then 24 hours.  What we found is that the one-in-three ratio holds.  Of our patient member responses, two out of three have either not sought treatment or wouldn’t seek treatment because of privacy concerns.  The other third believes that privacy doesn’t exist or doesn’t help people.  Although anecdotal, this is quite a finding and reflects what we believe to be the true nature of this debate:  There are times for openness and times for privacy.  Patients simply want control over when each is employed.

Do we ultimately know that sharing health information online is “safe”?  We answer that question in one of our FAQs, but the short answer is we don’t know.  Yes, there are risks that information will be misused.  But what we also know is that there is a benefit/risk equation for people and their health.  And when research is slow and treatment options are scarce, patients turn to each other for help and support.  They can’t wait 10 years or more for traditional clinical research.  Sharing becomes the best option.  The internet then becomes the most powerful medium to share information, identify new best practices, and ultimately create new medical evidence.

Our Openness Philosophy discusses how sharing health information is actually a way to democratize health data for the benefit of all stakeholders, patients, physicians, researchers, caregivers, and industry as well.  We can’t answer the question for you posed in the title.  Only you can decide if sharing health information online is for you.  We just want to give you the opportunity if and when you’re ready.

We would love to hear what you think!  Continue the conversation by leaving us a comment.

PatientsLikeMe member dwilliams