4 posts from May, 2008

What can happen when patients have access to one another’s data

Posted May 29th, 2008 by

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There is growing interest in and demand for access to personal health information and tools to review and discuss this information. But why? What do patients get from reviewing health information? More research is needed to know the answer.To examine this question and understand what value users get from one another’s information, Michael Massagli and I began to read through, categorize, and analyze some of the comments users have posted on the site. We are happy to say that the results of our study were published this week in the peer-reviewed open access journal, the Journal of Medical Internet Research, in the paper entitled Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data.

We, at PatientsLikeMe, think that patients can get more value from recording their health information when they share the results with one another – so that patients can learn not only from their own experience but also from the experience of others.As a first study, we looked at just one behavior on the site, the comments users post on one another’s profile. In many ways comments are not central to the site – forum and private messaging support more in depth conversations. But, because they are located on the profile itself, users tend to talk about data within these comments. In a qualitative analysis of a specific set of comments, we noticed a few themes. These were:

  1. Members read other people’s profiles to find an informed person of whom to ask advice. They see, for example, that the user tried a particular treatment or has had a specific experience then asks him or her about the it (e.g. “I see you went on Bipap and your functional level improved, did Bipap really help that much?“)
  2. Members offer personally acquired knowledge to those most likely to benefit from it on topics like treating a symptom, or getting an assistive device (e.g. one patient commented: “I see you note emotional lability. I had that very bad, but now I take a compound of dextromethorphan and quinidine that controls it beautifully”).
  3. As members review one another’s profiles, they identify particular points of similarity. Based on that similarity they begin a conversation and make an effort to establish an ongoing relationship (e.g. users says things like: I see we both had the same type of onset and are about the same age and health status, I would like to be available to compare health progress).

While this is just a first study of only one element of the site, this work describes what our users are capable of – how they are able to identify and dissect important features of the profile and use data to inform themselves and one another.

Understanding how people use data will also help us design increasingly sophisticated tools to support data-centered conversations on the site. Our goal is to help users receive the maximum benefit from sharing health information and experience. For more information, please take a look at the full paper – it is freely available online.


PatientsLikeMe member jeanafrost


Genetic Discrimination: The End Before the Beginning

Posted May 22nd, 2008 by

UpdatedThe Genetic Information Nondiscrimination Act (GINA) was signed into law by President Bush on May 21, 2008.

In a victory for openness and personalized medicine, on May 1, Congress sent President Bush a bill forbidding employers and health insurers from discriminating on the basis of genetic information. The Genetic Information Nondiscrimination Act was passed in the Senate 95-0, and in the House of Representatives 414-1, and President Bush is expected to sign it into law.

dnaa.jpgNow, Americans can take advantage of genetic testing without fear of being dropped from their health insurance or fired from their job for having a pre-existing condition. In essence, a person’s genes are protected in the same manner as their age, gender, race, and religion (and if you think about it, genes are merely an extension of some of those things!). Before this bill became a reality, many individuals were paying in cash for genetic tests or even denying themselves information that could have prepared them for, prevented, or aided in treatment of a disease.

For more information, see the AP article.

PatientsLikeMe member cbrownstein


Let’s make clinical trials more rewarding for patients

Posted May 19th, 2008 by

medical_report.jpgI came across this Wall Street Journal article earlier this week which details how patients with life-changing illnesses are using online services such as EmergingMed to help them enroll in clinical trials. The article points out that only 3% of adult cancer patients participate in trials, citing lack of awareness as a crucial factor. They write:

“studies show that the more likely culprit is ignorance… 85% of cancer patients were either unaware or unsure at the time of their diagnosis that participation in clinical trials was an option.”

In addition, there are also systematic flaws in the disjointed way that trials take place which makes it difficult to get accepted into a trial and can make participation unsatisfying even if you do. Say you’ve got ALS (Lou Gehrig’s disease or Motor Neurone Disease), a progressive and incurable life-changing illness and you’re being treated at a specialist centre that runs a lot of clinical trials. Here’s a few scenarios that could happen:

1. The Drug X trial is full before you can participate. Even if you’re suitable for a trial, it’s a matter of chance as to whether you’ll be seen at the hospital during their recruitment window. National, online databases which store shared medical data prospectively could help ensure a fairer system which gave equal opportunity to eligible patients.

2. The Drug Y trial is only looking to recruit a specific subset of patients so you’re not eligible. Maybe you’re eligible for a trial in the next state and they’re desperate for more participants; national trial registries would open up access and make it easier for researchers to recruit all types of patients quickly.

3. The Drug Z trial is an existing drug being used off-label. After taking the drug for 12 months your rate of progression has been slowed significantly and you wish to continue taking the drug. Although the study gets published in an academic journal, it’s not taken that seriously because it wasn’t a double-blind randomized control trial. If patients are willing to continue taking a treatment off-label with the agreement of their primary care physician, the use of an outcomes-sharing site like PatientsLikeMe provides an ongoing opportunity to monitor adverse events and perhaps even evaluate efficacy at little cost (bearing in mind the caveats and biases of such an approach).

synapse.jpgSome members of the medical establishment might say “Well, patients don’t really have a choice. Take it or leave it”. But that’s no longer the case. As our project charting off-label use of lithium in ALS shows, patients are increasingly taking control of their own personal research. Patients are also going the distance to take part in clinical trials they feel offer them the most hope. Our map of ALS patients with a Synapse diaphragm pacing implant shows the distances they have traveled to have the experimental procedure at Case Western in Cleveland, Ohio.

In order to accomplish their goals, clinical trial recruitment will have to change. PatientsLikeMe is playing an active role in driving these changes through from the bottom-up by encouraging patients to share information and take control of their own management. By partnering with organizations running nationwide clinical trials, we want to make it so that clinical research is something you do jointly with patients, not to them.

PatientsLikeMe member pwicks


The Power of “Light Touch” Moderation

Posted May 4th, 2008 by

Members of PatientsLikeMe interact a number of ways: viewing profiles, reading treatment and symptom reports, and posts in our forums. In contrast to many of the most heated arguments on the internet (politics, religion, Star Trek…), the discussions on PatientsLikeMe have a tangible impact on people’s lives. Patients with a chronic condition often spend many hours at their computer, and the online communities they belong to are as much a part of their social world as neighbours, church, or even family.

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Whilst there is no perfect solution to moderating a forum, we’ve tried to write down some of our collective knowledge. We hope it might provide some insight into our philosophy and may even be of use to others who moderate their own communities.

Reconciliation, not resolution: What if your users start an argument, do something inappropriate, or are hurtful to another user? First off, it’s important to recognise that what you say sets the tone, and scolding a user in public for a misdemeanour can be incredibly frustrating for them. Nobody thinks of themselves as unkind or inconsiderate, and embarassing them in this way will only make them more entrenched and possibly even disruptive in the future. Much better to send a discreet private message “behind the scenes” and let people fix their own mistakes so that they know they can stay here even if they’ve messed up (which we all do). We’ve seen users spitting blood at one another only to apologize a few days later and genuinely mean it, often forming much stronger friendships as a result. Contrast that with a temporary ban or an admin-imposed sullen handshake; in the long-term that solves nothing.

It’s about community, not answers: A common temptation is to provide exhaustive answers to every question posed. Although this might provide a good answer for the users, it sets up a dynamic: ask a question and it will be answered by the “proper authorities”. A general bit of guidance would be to say that whenever you see a question in need of answering leave it for a day or two before responding. That way you give another user the opportunity to answer it.

It’s a job, not a hobby: Moderating a forum is about being a professional, not a participant. It’s important to set boundaries for your own behavior and recognize how other users (who are nothing like you) might interpret it. For instance, I may have, on occasion, said a naughty word in public. In general though I tend not to curse on forums because I know it would upset some of our members and perhaps affect the way they saw me. It’s not just about the established veterans who would know I was fooling handshakearound, it’s for the newbies who have just come in through the door and want to know what this place will be like for them. If a post winds you up and makes you annoyed, feel free to write a lengthy, bile-filled diatribe of your own. In Word. Then delete it, let the post sit there till tomorrow, and come back to it in the morning.

Aspirations, not rules: In our community, we took an intentional stance not to make rules. If you make rules, rules are broken, and broken rules require consequences. That requires authority and enforcement, not things we’re keen to welcome into our community. Instead, our forum has a code of conduct which states what ideal members are: Ideal PatientsLikeMe members:

  • Ask questions to help themselves and other members learn about their condition
  • Welcome newcomers to the community
  • Keep personal information up-to-date, such as disease progress, symptoms, and treatments
  • Share their opinion with others in a considerate way
  • Respect confidential information and don’t transmit other users’ information outside the PatientsLikeMe community
  • Enjoy healthy debate on the forum but stick to the argument rather than making comments directed at an individual user
  • Check in on other users, make sure they’re OK and help them to keep their profiles accurate and up-to-date
  • Share personal experiences without trying to provide medical advice
  • Give feedback to the PatientsLikeMe Team about potential improvements, questions, or comments about the site

Does it work? Well, we’ve been running for 2 years now, in which time we’ve had 15,000 registered users, 100,000 + posts and 13,000 threads posted in our forums. Fortunately, we’ve only ever had to ban a handful of people. For the most part, if a group of users have had a heated argument about something, we now have a strong enough self-regulating ecosystem that it usually sorts itself out in a matter of a few hours.

Which means we can focus on what’s really important to our users: improving their health outcomes.

PatientsLikeMe member pwicks