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Winner of Amgen Patients | Choices | Empowerment Competition Emerging Star of HealthCare Engagement Award
Mayo Clinic Award - LeftA winner of the Mayo Clinic iSpot Competition for Ideas that will Transform HealthcareMayo Clinic Award - R

Open Letter: CureTogether’s Philosophy

June 2nd, 2011 Alexandra Carmichael Posted in Perspective 2 Comments »

Dear everyone,

I’ve been wanting to write this post for a while. Partly to better explain who we are at CureTogether, and partly to advocate for a different way of running a startup.

I’m in a very open state after working with the amazing Gary Wolf to put on the first Quantified Self conference, so now seems like a good time to define and clarify our philosophy – what CureTogether is and what it isn’t.

1. We’re not here to compete.

People tend to assume we’re competing with PatientsLikeMe, MedHelp, MediGuard, 23andWe, HealthTap, Genomera, Edison, Google Health, etc. We’re not. I’d like to hereby give them all a standing ovation for the awesome work they’re doing to help patients. Rather than any one of us “winning”, we need many, many more innovators working on health! Seriously, it’s a giant problem and we need as many brains as possible focusing on it.

2. We’re not in this for money.

As a two-person social business, we run very lean, and don’t have any need for extravagant lifestyles. We’re very happy working out of our one-bedroom apartment. We don’t want venture capital, we aren’t running a stressful race to get acquired and sell out – we just like to get up every day and help patients in a calm, positive way, changing lives and doing what we love to do.

3. We don’t sell your data.

This may be the most common misconception about CureTogether. Your data is your data, totally private for only you to see. Aggregate statistics are made available on our website – for free. Occasionally, we will work with reputable research organizations to get more brilliant minds working on improving everyone’s health, and they sometimes make donations to support our work. In these cases, we may share some of the data we gather, but always take numerous steps to protect our members – both technical (such as removing any potentially identifying data prior to sharing), and legal (requiring researchers to legally bind themselves to not even attempt to personally identify any of our members). Sometimes, we will do custom research studies for companies and get paid for it. In these cases, we never share raw data with them. We only generate reports based on abstracted findings, similar to what we publish openly on our website. We’re also getting funding from prizes and awards, which is a reflection that we’ve built something useful. We chose carefully to be a for-profit company because we can do much more good as a business than if we had to constantly ask for donations.

4. We do want to help.

I live with several chronic conditions, so I understand daily suffering. It’s mostly under control now for me, so I live by the motto that every day I’m not in pain is a day I can help others in pain. Our strength is in thoughtful, powerful analysis and solving very hard problems. So we may not have slick iPhone apps, or a buzzing Twitter account. But we do commit to openly releasing the discoveries that we’re putting our full brainpower on, and we believe we will make some major discoveries to help millions of people suffering – they’re waiting for us, and we feel it every day.

5. We need your help, too.

We’re not into advertising, tricking people into signing up (like one VC tried to get us to do), or social media gimmicks. Daniel and I are also not super social people who go to all the conferences talking about what we do. We prefer to just sit down with our laptops and do the hard work. So if you have any way to help get the word out to more patients, and feel inspired to help, please feel free to go ahead, or let us know how we can empower you (like if you need slides for a talk, or quotes for an article, or whatever.)

OK, that’s all I wanted to say for now. Thanks for reading this, and please leave a comment below if you have a reaction you’d like to share.

Have a wonderful day, and take good care!
Alex :)

Alexandra Carmichael
Co-founder, CureTogether

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Perspective on Patient Empowerment

May 31st, 2011 Alexandra Carmichael Posted in Perspective No Comments »

Quintiles asked me to write an essay on patient empowerment for their New Health Report, that was just released. Here’s what I wrote:

When patients are diagnosed with a chronic illness, they face a maze of decisions, questions and options that can be overwhelming. Doctors, insurance providers, pharmaceutical companies and online communities all offer important resources to help patients make these decisions and answer their questions.

But patients do not always realize their own power. Patient voices can be elevated to not only direct their own health and healthcare, but also to influence the development of new treatments, decide how value is defined in healthcare and improve the perception of patients as knowledgeable participants in the conversation about their own health.

As patients are the experts at understanding their own bodies, especially for chronic conditions (living with a chronic illness every day, trying every possible treatment, knowing what works and what doesn’t, connecting with other patients), there is a wealth of knowledge and expertise in these bodies and minds that is untapped.

Patients can influence which treatments are developed for which conditions, by speaking up loudly enough for themselves, and which ones are discontinued because of, say, too many adverse effects. By the same token, pharmaceutical companies, insurance companies and doctors will increasingly need to realize the decision-making power of patients, and take the time to understand patient needs, demonstrate the value of new treatments to them and involve patients in the healthcare conversation. Patients are willing to do more, but need to be trusted and enabled to do so.

How can patients impact drug development? There is a definite trend towards patients increasingly taking active control of their health, sharing information about treatments with each other and seeing the healthcare system as a partner in making decisions. Patient-reported comparative effectiveness studies and the power of patient activism will play increasingly significant roles in the success or failure of new therapies.

What can players in the rest of the healthcare space do to intersect with and make the most of this increasing trend? Some ideas to consider are to start by going where empowered patients gather—in online patient communities, social media and patient advocacy groups. Tap into how patients experience their conditions and how they feel about the treatments they try—what are their emotional, social, financial, lifestyle and health needs?

A focus on understanding and empowering patients will help all health stakeholders to better meet the needs of their customers, maintain a positive reputation going forward, and improve quality of care. Everybody wins when patients are empowered instead of overwhelmed.

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How to Stick to Self-Tracking with Minimal Distress

January 27th, 2011 Alexandra Carmichael Posted in Perspective 12 Comments »


Tracking shouldn’t be THIS hard! (credit: bobinson)

I got this question the other day from a researcher:

“A struggle for many people is figuring out how to adopt new health behaviors and habits into their lives and then sticking with them. Do you have any great insights into techniques that work best for people?”

Here’s what I answered:

Yes, I’ve been thinking a lot about this question. For background, here are two posts I wrote at Quantified Self on all the different things I was tracking and why I stopped tracking entirely for a while.

I have to say, tracking is HARD to stick to, even for motivated people. And it can even be distressing if you’re not tracking the right things, or tracking too many things. I’m working on a framework for how to stick to tracking and minimize psychological harm (still a work in progress!), and the principles I have so far are:

1. Track things you can impact and want to change.

Unless you have a specific observational experiment in mind, like how does the weather affect my mood, it’s best to measure things that you can change. That way you can see if what you are trying to do is working or not.

Say I want to lower my blood pressure. I can measure it every day, notice it going up on stressful days, and notice that on days when I try meditating in the morning, it drops. Now I have a greater awareness of what affects my blood pressure, and I’ve learned more about how to manage it.

2. Keep it simple.

The more things you track, the more likely you are to get overwhelmed and give up on the whole thing entirely. Choose one or two metrics that are very meaningful where you would like to see a change, and only focus on those.

3. Have intentions, not goals.

Goals only set you up for disappointment and self-judgment. And even if you do reach them, then what? With an intention, like the intention to live an active lifestyle, it becomes part of your identity. Then it doesn’t matter so much if you miss a day of running, and it’s easier to get back on track.

4. Be gentle with yourself.

We are human, we all mess up, and we are all hard on ourselves. Any amount of tracking you do will help you to be more self-aware, and is a reason to celebrate. And when you inevitably eat that donut or just feel like lying on the couch for once, that’s ok!

So what do you, wonderful blog readers, think of this framework? Any insights to add, or critiques?

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How CureTogether is Unique

September 29th, 2010 Alexandra Carmichael Posted in Open Source Research, Perspective 1 Comment »

I get this question so often that I thought I’d just write it up in a post, so here goes!

What makes CureTogether unique?

1. Quantitative Crowdsourcing.

CureTogether is about quantifying the collective patient experience. While most other patient support sites have focused on stories or information from experts, we focus on quantitative data across over 600 patient-contributed conditions. Individual data is kept private, but the anonymized aggregate data is shared openly to maximize discoveries that can be made.

2. Open Infographics.

At over 1 million data points, CureTogether has the largest available real-world comparative effectiveness database available to patients online. It’s deep knowledge shared from individual patient experiences, elevating global patient voices in a way that has never been done before. We help patients learn what treatments are available for their condition (based on what others are trying), and how popular and effective each treatment is reported to be. Patients can also track any measures of their health over time, recording weight, stress levels, pain, mood, and share this information with their doctors.

3. Breaking Isolation.

CureTogether also helps people find and connect with others with whom they share multiple health conditions, which would otherwise be extremely difficult since most health sites are organized around individual conditions. Imagine finding someone who shares 7 conditions with you and being able to ask them private questions.

4. Novel Discoveries.

Finally, we have unique data on co-morbidities. We’ve been able to replicate an association between infertility and asthma (and dozens of other conditions) using only patient-contributed data. As more patients add their voices, we will be able to give more personalized information about what might work for whom.

Patients are helping each other, helping research go forward into their conditions, and helping themselves.

I hope that answers the question!

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Are You Biased? How To Make The Right Decisions

March 15th, 2010 Alexandra Carmichael Posted in Perspective No Comments »

Would you make this choice? (photo credit: notsogoodphotography)

“Bias is the worst disease from which the society of our nation suffers” – Albert Einstein
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What is bias and how does it affect your health?

Well, it turns out human brains have a number of cognitive biases that can interfere with good decision making (and delay your progress toward feeling better). For example, people tend to worry about the risk of taking a new treatment, while underestimating the baseline risk of doing nothing about their suffering.

Here are a few of the colorful biases we have as humans:

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1. Bandwagon bias – the tendency to do things because other people are doing them. “Everyone else is on the Atkins diet, so I’ll try it too.”

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2. Confirmation bias – the tendency to search for or interpret information in a way that confirms your preconceptions. “See, I have shortness of breath, so I must be having a heart attack.”

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3. Expectation bias – the tendency to keep data that agree with your expectations for the outcome of an experiment, and to disregard data that conflict with those expectations. “Well, that meal didn’t count because…”

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4. Framing effect – drawing different conclusions based on how data is presented. “If I only look at the last 2 days, I’ve been sleeping 7 hours a night.” (disregarding the insomnia from the last 3 weeks).

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5. Wishful thinking bias – forming beliefs and making decisions according to what is pleasing to imagine instead of by appeal to evidence or rationality. “I can have 8-minute abs with no effort just sitting on my couch.”

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6. Availability bias – estimating what is more likely by what is more available in memory, which is biased toward vivid, unusual, or emotionally charged examples. “I’m more likely to die in a plane crash than a car crash because I see more plane crashes on TV.” (but car crashes are much more likely)

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7. Selection bias – a distortion of evidence or data that arises from the way that the data are collected. “I’m only going to measure my blood pressure on weekends.”
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Despite the dozens of biases we have, we manage to function pretty well most of the time, right?

Yes, but it’s still a good idea to take a second to check in on these biases before making any major decision. But keep in mind that sometimes the biases can’t be overcome even if we know about them.

For more fun reading on cognitive biases, see Wikipedia’s comprehensive (and entertaining) article on the topic. Do you have any of these biases?

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Related Posts

How To Run A Successful Self-Experiment

Feel Better – How To Find A Treatment That Works

Getting Diagnosed – How To Choose The Right Test

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How To Run a Successful Self-Experiment

March 12th, 2010 Alexandra Carmichael Posted in Perspective 7 Comments »

New relationship = more sex, new baby = more weight gain (Photo credit: juhansonin)

“Whatever course you decide upon, there is always someone to tell you that you are wrong. There are always difficulties arising which tempt you to believe that your critics are right. To map out a course of action and follow it to an end requires courage.” - Ralph Waldo Emerson

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Say you’ve chosen to try a new treatment or new intervention for your health. How do you really know how well it is working?

The key is to run a self-experiment, to have the numbers tell you what’s happening. This is easier to do with some treatments than others, but here are 5 general principles that will help you do a successful self-experiment:
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1. One test at a time. Keep it simple. Don’t try to test too many new variables at once, or your results will not be meaningful. Change one thing and one thing only, trying to keep everything else the same, and see what happens.
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2. Define your outcome variables. What do you want to measure? If you want to see if something is affecting your mood or sleep, track how happy you are or how many hours you sleep. If your new treatment is to help with pain, track pain levels. Try to keep the things you measure to a minimum too – identify the one or two things you really want to change and see if they are changing.
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3. Track these over time (longitudinally). One day of data isn’t enough to see how well something is working. Depending on what you’re measuring, you might need a few weeks of data to start seeing patterns. Or you might notice a change sooner than that. Ideally, start measuring yourself BEFORE you start the treatment, so you’ll have a baseline measurement to compare your new results to. For example, if you want to lower your blood pressure, start by knowing what your blood pressure is, then you’ll know if it’s improving or not.
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4. Do an N=1 randomized controlled trial on yourself. Here’s where you can start to get fancy if you want more scientific results. CureTogether will soon be able to set up a randomization schedule for you, where you take a treatment some days and a placebo on other days. This might not work for some medications where not taking them would mean severe withdrawal or other side effects, but would probably work fine for things like lifestyle or dietary interventions
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5. Self-blind your study. For uber-geeks, you could even go so far as to create your experiment so that you don’t know whether you’re taking a treatment or not. This would eliminate any placebo effect and give you the most definitive results from your self-experiment.
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On the other hand, if this is getting complicated, watch Professor Seth Roberts’ “Stop Worrying and Start Experimenting” talk on experiment design and keeping it simple.

Seth Roberts on experiment design from Kevin Kelly on Vimeo.

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Once you have your data and have analyzed your results, now it’s the time to make decisions on how to continue your course of treatment.

If it’s working, keep going!

If it’s not, rinse and repeat your self-experiment with a new intervention.

At the same time, keep in mind that our decisions can often be biased, which will be the topic of our next blog post, “Are You Biased? How To Make The Right Decisions”.
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Related Posts

Feel Better – How To Find A Treatment That Works

Do You Have A Condition? How To Find Out

Getting Diagnosed – How To Choose The Right Test

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Feel Better – How To Find a Treatment That Works

March 10th, 2010 Alexandra Carmichael Posted in Perspective 2 Comments »

Traditional Chinese Medicine of Bamboo Cupping (photo by johey24)

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Fall seven times, stand up eight. – Japanese proverb

You’ve received a diagnosis. A mix of emotions sets in – relief, panic, confusion. What do you do next?

The menu of treatment options can seem overwhelming.

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Here are 3 simple principles to get you started:

1. Ask your doctor. Chances are your doctor has a good handle on your history, the context of your condition, any other prescriptions or supplements you are taking that can interact, etc. See what her recommendation is, then do your homework looking it up online. Wikipedia and PubMed are good places to go for reliable information.

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2. See what the crowd has to say. Have a look at the stats at CureTogether as another piece of information that can help you decide. Treatments for over 400 conditions have been reported by patients at CureTogether.
 You might see some ideas on the list that you hadn’t thought of before.

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3. Don’t forget about cost. There are 3 kinds of cost to look at when it comes to considering a new treatment:

- the financial cost to your monthly budget

- the cost to your body in terms of risk of potential side effects

- and, on the flip side, the cost of not getting the condition treated – what’s it likely to cost you in terms of quality of life and ability to earn a living?

Find or figure out the numbers for all these costs before you make your decision.


The next step is to see how well each treatment you try is working for you. Stay tuned for our next blog post on “How To Run A Successful Self-Experiment”.

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Related Posts:

Do You Have A Condition? How To Find Out

Getting Diagnosed – How To Choose The Right Test

13 New Discoveries at CureTogether

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Getting Diagnosed – How To Choose The Right Test

March 8th, 2010 Alexandra Carmichael Posted in Perspective 1 Comment »

Say “Aaaahh!” (Photo credit: superfantastic)

“First the doctor told me the good news: I was going to have a disease named after me.” - Steve Martin
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Say you’ve decided to go ahead and get a diagnostic test done to have a more definite answer on whether you have a condition like depression.

Now what? Where do you start?

First off, here are some general factors to consider in choosing a test:
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1. Informativeness is basically how good the test is at telling you something useful. How informative a test is comes from both its sensitivity (how likely the test is to diagnose you as positive if you do have a condition, or avoiding false negatives) and specificity (how likely the test is to not diagnose you if you don’t have it, or avoiding false positives).

The ultimate test is both sensitive and specific – and most likely to give you an answer you can trust.

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2. Invasiveness is how disruptive or uncomfortable the test is to perform. A questionnaire is non-invasive, a laparoscopic surgery is invasive.

Try to minimize invasiveness if there is a choice between two otherwise equal diagnostic tests.

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3. Cost is definitely a factor for many people, even with insurance. People with higher deductibles or no insurance altogether will have to pay even more attention here.

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Using depression as an example, the diagnostic test consists of a visit to a doctor or therapist’s office and a series of questions drawn from the DSM IV.

Sensitive? Yes, 86% chance it will diagnose you if you do have depression.

Specific? Yes, 82% chance it will not diagnose you if you don’t have depression.

Invasive? No.

Cost? $130+. Of course, if you want to continue therapy, start medications, or find alternative treatments, that will increase your costs.
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You can find a list and helpful descriptions of common diagnostic tests at Harvard Medical School’s Family Health Guide.

And for tips on how to find the best treatment for you, stay tuned for our next blog post: “Feeling Better – How To Find A Treatment That Works”.
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Do You Have A Condition? How To Find Out

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Do You Have A Condition? How To Find Out

March 5th, 2010 Alexandra Carmichael Posted in Perspective 2 Comments »


Be an investigator into your own health! (Photo credit: chrisbb)

“Trust yourself. You know more than you think you do.” – Benjamin Spock

How do you know if you have anxiety, migraine, anklosying spondylitis, or something else?  If you haven’t already been diagnosed with it, here are a few simple, general pointers to set you on the right path:
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1. Is your condition rare? In the case of anxiety and migraine, no – they affect tens of millions of Americans each. But it’s always a good idea to look at prevalence data to figure out your baseline risk. In other words, don’t overestimate your risk of having a condition just because you have one of its symptoms.

Wikipedia often has prevalence data for conditions, and disease foundations are another good source for this.
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2. Do your symptoms match up? If you think you may have a condition, compare yourself with others who have that condition to see how well you fit. Take a quick look now to see if you have most of the common symptoms: over 7000 people at CureTogether have reported symptoms for 469 conditions.

Search for the one you’re looking for here and see if you match up.
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3. Should you get diagnosed? If your symptoms do match, you might want to get a more definite answer on whether the condition you’re looking at might be causing these symptoms in you, so that you can find support and appropriate treatment. If it’s a problem in your life, it’s a good idea to get diagnosed.

To learn more about choosing a diagnostic test and finding relief from your symptoms, stay tuned for our next blog post: “Getting Diagnosed – How To Choose The Right Test“.
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Related posts:

13 New Discoveries at CureTogether

Depression Sufferers 3x More Likely to Have Anxiety

5 Free Self-Tracking Tools to Help You Get In Shape

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CureTogether in h+ Magazine

December 9th, 2009 Alexandra Carmichael Posted in Health Tracking, Perspective No Comments »

self-tracking

h+ Magazine asked me to write an article about self-tracking, so I did! It’s in the Winter Issue of h+, available for download now.

It talks about Gordon Bell’s self-tracking work at Microsoft, the Quantified Self, my own tracking, and CureTogether.

I think the Quantified Life is worth living, do you?

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