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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

Perspective on Patient Empowerment

May 31st, 2011 | by Alexandra Carmichael | Posted in Perspective |

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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Announcing the Health Data Discovery Contest

May 25th, 2011 | by Alexandra Carmichael | Posted in Events |


What it is:

Over the past 3 years, CureTogether has gathered millions of patient-reported data points on symptoms and treatments for over 500 conditions. Now it’s time to test on a larger scale how well CureTogether data represents the general population. Do they match up or not?

So we’re running a contest to tap the most brilliant stats minds out there. Challenge our dataset! See whether or not it holds up to existing research studies. Why? You’ll be helping to demonstrate the effectiveness of online platforms for medical discovery, and ultimately helping to reduce global suffering.

NOTE! The goal of the competition is not to reach any predetermined conclusion. It is to measure as well as we can how much our conclusions agree or disagree with the PubMed literature. Whether you find agreement or disagreement or something in between will have no effect on your chances of winning.

(There’s also a cash prize. And we’ll help you get your findings published. And if you REALLY impress us, we just might have you come work with us! For real.)

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How it works:

- Pick one or more of CureTogether’s top conditions
- Find one or many discoveries on PubMed or GoPubMed to compare to CureTogether data
- Ask Alexandra (CureTogether co-founder) for the anonymized data
- Prepare analyses and/or visualizations that demonstrate and quantify how well CureTogether data matches up with the independent studies (use R, Python, SQL, SAS, SPSS, Excel, Sweave, or your favorite tool)
- Send Alexandra what you find
- Win $3,000 top prize, $1,000 second prize, or one of four $250 third prizes
- Get recognition on CureTogether’s Team page, blog, Twitter account, etc.
- If the code and data for your work is made openly available, we will help submit your findings to Open Research Computation, Journal of Participatory Medicine, and other journals.

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Examples of discoveries to replicate:

- Disease correlations/co-morbidities
- Treatment effectiveness
- Symptom prevalence
- Gender/age prevalence
- Symptom biomarkers for disease diagnosis or treatment response
- Anything else you find interesting or relevant (you might get some ideas by looking at CureTogether’s research findings so far)

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Criteria/Scoring:

- 25% – Does the entry powerfully or extensively quantify the extent to which CureTogether data matches up with independent studies? Finding a discrepancy is as interesting as finding a confirmation.
- 25% – Is there a clear demonstration of method and results? How did you analyze CureTogether data, and how did you do the meta-analysis to compare it with the other studies?
- 25% – Is there a plausible, testable hypothesis that seeks to explain any similarities or differences between our data and other datasets studied?
- 25% –  Does the entry compare CureTogether data with several high quality independent studies with large sample sizes, studies that have been replicated multiple times, more recent studies, etc?
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Eligibility:

- Must be 18 years of age or older
- Open to individuals, organizations, or teams in any country around the world (if a team wins, prize money will be equally distributed)
- Signed data access agreement to protect patient privacy and use of their data
- Signed release for CureTogether to post the findings publicly

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Judges:

- Alexandra Carmichael, CureTogether and Quantified Self
- Daniel Reda, CureTogether
- Dr. Will Dampier, Center for Integrated Bioinformatics, Drexel University
- Prof. Seth Roberts, Tsinghua University and University of Berkeley
- Prof. Victoria Stodden, Department of Statistics, Columbia University

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Timeline (2011):

- Intent to participate cut-off (data requests sent in) – July 29
- First draft of discoveries submitted for feedback by – August 29
- Final discoveries submitted by – October 29
- Winner(s) announced – November 15
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Get started now! Tell Alexandra you’re interested in joining the contest here.
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23 Surprisingly Effective Treatments for Depression (One Year Later)

May 3rd, 2011 | by Alexandra Carmichael | Posted in Infographics, Research Findings |


For the live-updated, interactive version of this infographic, click here.

A year ago, we published one of our most popular findings – 6 surprisingly effective treatments for depression. I went ahead and repeated the analysis today, and now we have 23 treatments in the “surprisingly effective” category for depression.

This chart is based on 4,956 people with depression who participated in CureTogether surveys, compared to 944 people last year.

The top treatments are still exercise, sleep, and talking to others – they are popular and effective ways to feel better when you’re depressed.

But here are 23 things you may not have tried that thousands of others say worked well for them:

1. Music therapy
2. Art therapy
3. Mindful meditation
4. Massage therapy
5. Group sports
6. Breathwork
7. Light therapy
8. Eye movement desensitization and reprocessing (EMDR)
9. Neurofeedback
10. Tai Chi
11. Personal growth workshops
12. Support groups
13. Xanax
14. Sertralin
15. Venlaxafin
16. Mirtazapine
17. Shiatsu
18. Dialectical Behavior Therapy
19. Lamictal
20. Bioidentical Hormone Replacement Therapy
21. Bibliotherapy
22. Synthroid
23. SAM-e

Another new thing on this chart: alcohol was added as a treatment, and was rated to make depression worse instead of better.

To navigate the graph above:

The top right quadrant shows the most popular and effective treatments, and the top left quadrant shows treatments that not many people have tried but that have above-average effectiveness, so they may be options to think about (e.g. the 23 treatments listed above).

Treatments in the lower right quadrant are ones that lots of people have tried but that have below-average effectiveness (e.g. caffeine, fish oil), and treatments in the lower left quadrant are reported as neither popular nor effective, so you may want to consider this when choosing a treatment (e.g. Effexor, Paxil).

Where did this data come from? CureTogether members have been anonymously sharing symptoms and treatments for almost 3 years now. We analyzed and visualized the data into infographic form to make it more accessible. To thank everyone for their contributions, we’re releasing this result back to the community for free.

This is part of our regular series of research findings. Of course, with each of these findings, there is a potential bias in patient self-selection and recall. Every research study has some bias, so we present these findings as just what they are – patient-reported data – to stimulate discussion and generate new insights for further research. Stay tuned for more and please let us know in the comments below if this was helpful or interesting for you.

Please tweet, blog, or pass this along to anyone who can benefit or is interested in depression. Thank you!

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New Research Partner: MIT Media Lab

April 28th, 2011 | by Alexandra Carmichael | Posted in Open Source Research, Random Company News |

We are excited to welcome Ian Eslick of MIT Media Lab to our research partners! Ian is studying collective self-experimentation and treatment recommendations, and will access subsets of CureTogether’s data to assist with his research.

CureTogether actively partners with academic researchers who approach us about studying our data. We believe having more minds looking at the data will only accelerate discovery, as each researcher brings their own approach and interest to the data analysis.

Our current research partnerships include, in alphabetical order by institution:

Carnegie Mellon University
Kateryna Kuksenok and Jen Mankoff
Dynamic filtering visualization of CureTogether data (in progress)


Drexel University

Will Dampier
Building an adaptive recommendation system for treatments (in progress)


Emory University

Adam Sperduto and Suephy Chen
Feasibility and Reliability of Internet Crowdsourcing Data Collection with Dermatologic Quality of Life Assessment Tools


MIT Media Laboratory
Ian Eslick
Collective self-experimentation and recommendations (in progress)


Stanford University
Diana MacLean and Jeff Heer
Analysis and visualization of community dynamics and data over time (in progress)


Transparency Life Sciences
Tomasz Sablinski
Open Source Clinical Trial on Low-Dose Naltrexone


University of California Davis
April W. Armstrong, MD MPH
Personalized Therapeutics and Evaluation of Treatment Responses in Skin Diseases from Patient-Driven Data (in progress)


If you are a researcher interested in working with CureTogether’s data for your project, please let us know.

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Top 15 Treatments for Mitral Valve Prolapse

March 30th, 2011 | by Alexandra Carmichael | Posted in Infographics, Research Findings |

For the live-updated, interactive version of this infographic, click here.

Heart palpitations, fatigue, anxiety, a feeling of dread, shortness of breath, trouble sleeping. For most people with Mitral Valve Prolapse, symptoms are mild, but often uncomfortable enough to want to do something about it.

Fortunately, there are simple lifestyle changes that help, as well as medications. At CureTogether, 460 people have reported having MVP, and 227 of them have contributed 2,526 data points on their ratings of 37 treatment ideas.

Here are the top 15 treatments for Mitral Valve Prolapse, as rated by people living with it:

1. Avoid caffeine
2. Air conditioning
3. Avoid alcohol
4. Drink lots of water
5. Diet changes
6. Meditation
7. Xanax
8. Avoid sugar
9. Beta blockers
10. Eat salt
11. Cognitive therapy
12. Exercise
13. Propranolol
14. Acupuncture
15. Epsom salt bath

To navigate the graph above:

The top right quadrant shows the most popular and effective treatments, and the top left quadrant shows treatments that not many people have tried but that have above-average effectiveness, so they may be options to think about (e.g. Xanax, eating salt).

Treatments in the lower right quadrant are ones that lots of people have tried but that have below-average effectiveness (e.g. B Vitamins, Aspirin), and treatments in the lower left quadrant are reported as neither popular nor effective, so you may want to consider this when choosing a treatment (e.g. St. John’s Wort, Wellbutrin).

Where did this data come from? CureTogether members have been anonymously sharing symptoms and treatments for almost 3 years now. We analyzed and visualized the data into infographic form to make it more accessible. To thank everyone for their contributions, we’re releasing this result back to the community for free.

This is part of a series of research findings we’ve been publishing over the past few months. Of course, with each of these findings, there is a potential bias in patient self-selection and recall. Every research study has some bias, so we present these findings as just what they are – patient-reported data – to stimulate discussion and generate new insights for further research. Stay tuned for more and please let us know in the comments below if this was helpful or interesting for you.

Please tweet, blog, or pass this along to anyone who can benefit or is interested in Mitral Valve Prolapse. Thank you!

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New: Genetic Data Added to CureTogether Research

March 24th, 2011 | by Alexandra Carmichael | Posted in Random Company News |

 

I read recently about the idea of a “data donor” – someone who decides to donate their data to disease research rather than the more customary financial contribution.

In the future, as people gather more and more information about themselves, and learn the value of this data, I think that data donorship will become widespread.

At CureTogether, we’ve just added the ability for our members to upload their 23andMe genetic data to add to the research we’re doing. People are already eagerly adding their genetic data, and once we have enough genomes, we can start making discoveries towards understanding how our genes influence what symptoms we have and what treatments work for us.

In the screenshot above, you can see the interface for uploading your 23andMe data. You may also notice some points and badges we’re testing out – but that’s a story for another post!

We want to deeply thank all of our data donors – your information does make a difference in helping people around the world feel better.

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Irritable Bowel Syndrome: New Data on Treatments That Work

March 16th, 2011 | by Alexandra Carmichael | Posted in Infographics, Research Findings |

For the live-updated, interactive version of this infographic, click here.

If you’re like 15% of the population, you may be living with Irritable Bowel Syndrome, whether you know its name or not. And if you do have this chronic bloating, uncomfortable bowel pain, you may be wondering what to do about it.

Hundreds of people in the same boat have some ideas for you.

At CureTogether, 2,341 people have reported having IBS, and 358 of them have contributed 2,936 data points on their ratings of 49 treatment ideas.

So what works best for patients with IBS? Avoiding foods that cause flare-ups and reducing stress take top spots in patient reports.

To navigate the graph above:

The top right quadrant shows the most popular and effective treatments, and the top left quadrant shows treatments that not many people have tried but that have above-average effectiveness, so they may be options to think about (e.g. Physical therapy, yoga).

Treatments in the lower right quadrant are ones that lots of people have tried but that have below-average effectiveness (e.g. fiber supplements, fish oil), and treatments in the lower left quadrant are reported as neither popular nor effective, so you may want to consider this when choosing a treatment (e.g. Evening primrose oil, Peppermint oil).

Where did this data come from? CureTogether members have been anonymously sharing symptoms and treatments for almost 3 years now. We analyzed and visualized the data into infographic form to make it more accessible. To thank everyone for their contributions, we’re releasing this result back to the community for free.

This is part of a series of research findings we’ve been publishing over the past few months. Of course, with each of these findings, there is a potential bias in patient self-selection and recall. Every research study has some bias, so we present these findings as just what they are – patient-reported data – to stimulate discussion and generate new insights for further research. Stay tuned for more and please let us know in the comments below if this was helpful or interesting for you.

Please tweet, blog, or pass this along to anyone who can benefit or is interested in IBS. Thank you!

 

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Infertility-Asthma Link Confirmed

March 7th, 2011 | by Alexandra Carmichael | Posted in Infographics, Research Findings |

It’s time to start repeating some of our earlier studies to see if they hold up with the larger dataset we’ve now gathered in collaboration with our nearly 25,000 marvelous members.

The very first discovery we announced, back in September 2009, was an association between Infertility and Asthma. The 2009 finding was based on an analysis of 324 members, and revealed that members with Infertility were 1.9x more likely to report Asthma.

We just re-ran the analysis (15 months later), with data from 3,735 members (11.5x larger sample!) and we discovered that… the association still holds.


 

 

The gritty details: within the 253 people reporting infertility, 51 (20%) reported having asthma (the remaining 202 out of 253 specifically said they did NOT have asthma). Within the 3482 people reporting “no infertility”, 504 (14%) reported having asthma (the remaining 2978 specifically reported NOT having asthma).

This 20% vs. 14% relative risk is statistically significant with a 99% confidence interval of 1.1-1.8x. It’s a smaller effect size than our original discovery (1.4x instead of 1.9x), but demonstrates a level of consistency and robustness in the data being gathered.

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CureTogether Goes Mobile! New Treatment Finder and Symptom Checker Apps

March 4th, 2011 | by Alexandra Carmichael | Posted in Random Company News |


 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

At long last, after many requests, we have made a mobile version of CureTogether. It works across all platforms, and you can access it by going to http://curetogether.com with your mobile device.

We’ve built two apps to get the ball rolling, and more will be released as we go. With Treatment Finder, you can quickly look up the top patient-reported treatments for any of our 500+ conditions. And with Symptom Checker, you can do the same thing for patient-reported symptoms.


 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Here’s what they look like for Anxiety, our most popular condition community (above). You can see that the most effective reported treatments are Exercise and Deep breathing, and the most severe reported symptoms are Heart palpitations and Nausea.

We hope this makes it easier to access CureTogether stats on the go, in case you, your friends, or your family have health questions that you need to find a quick answer for.

Please let us know what you think of the new mobile apps, and feel free to suggest other apps you’d like to see us build for you to make your life richer and reduce suffering.

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What Patients Say Works Best for ADHD

February 22nd, 2011 | by Alexandra Carmichael | Posted in Infographics, Research Findings |

For the live-updated, interactive version of this infographic, click here.

Despite only being recognized as a disease for the past 20 years or so, Attention-Deficit Hyperactivity Disorder seems to be fairly well understood, at least in terms of the effectiveness of treatments that patients report.

At CureTogether, 674 people have reported having ADHD, and 1,069 data points have been shared about treatment ratings.

So what works best for patients with ADHD? Exercise and Adderall take top spots in patient reports.

To navigate the graph above:

The top right quadrant shows the most popular and effective treatments, and the top left quadrant shows treatments that not many people have tried but that have above-average effectiveness, so they may be options to think about (e.g. Dexadrine, Vyvanse).

Treatments in the lower right quadrant are ones that lots of people have tried but that have below-average effectiveness (e.g. fish oil, green tea), and treatments in the lower left quadrant are reported as neither popular nor effective, so you may want to consider this when choosing a treatment (e.g. Strattera, Wellbutrin).

Where did this data come from? CureTogether members have been anonymously sharing symptoms and treatments for almost 3 years now. We analyzed and visualized the data into infographic form to make it more accessible. To thank everyone for their contributions, we’re releasing this result back to the community for free.

This is the twelfth in a series of infographics we’ve been publishing over the past few months. Of course, with each of these infographics, there is a potential bias in patient self-selection and recall. Every research study has some bias, so we present these findings as just what they are – patient-reported data – to stimulate discussion and generate new insights for further research. Stay tuned for more and please let us know in the comments below if this was helpful or interesting for you.

Please tweet, blog, or pass this along to anyone who can benefit or is interested in ADHD. Thank you!

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