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HONcode status
 
Certificate of compliance with the Code of Conduct HONcode


HONcode status The health Website
PatientsLikeMe
is in compliance with the HONcode


Title of the site:PatientsLikeMe
Web address:http://www.patientslikeme.com/
HONcode PIN number :HONConduct682674
Date of initial review: 08 Jan 2008
Validity of certificate12 Jul 2013 - Jul 2015
Date of last visit25 Feb 2014

This certificate confirms the revision of the site by the HONcode Team at the above date.
It respects and pledges to honor the 8 principles of the HON Code of Conduct (HONcode).

* 1. Authoritative   2. Complementarity   3. Privacy   4. Attribution   5. Justifiability   6. Transparency
    7. Financial disclosure   8. Advertising policy



HONcode status
HONcode status

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Do you think the site is not respecting the HONcode? Do not hesitate to report a claim on this site

The Health on the Net (HON) certificate serves as a guarantee that this website, at the date of its certification, complies with and pledges to honor the 8 principles of the HON Code of Conduct as drawn up by the HON foundation.

The responsible of the certified site commits to keep the site in compliance with the HON code principles for the duration of the certification.

Although measures such as a complaint mechanism, the periodical review and the automatic surveillance mechanisms are put in place to guarantee the compliance of the certified website with the ethical principles of HON as much as possible, incidental inaccuracies cannot be completely excluded. In no event the HON foundation and/or its partner(s) can be held liable for any damages resulting from the use or inability to use HON certified websites nor can the HON foundation and/or its partner(s) be held liable for the content of these certified websites, including, but not limited to the information of third-parties or hyperlinks accessible via HON certified websites.

The certified website is responsible for the content of its website, unless otherwise provided by law.

 

>> More information about the HONcode?

You will find below the elements identified by the HONcode team at a precise date to justify the respect of the 8 ethical principles.

The content of this certificate has been collected and written by the Health On the Net Foundation (HON) and should not be used without previous permission granted by HON. A request for permission can be sent to: HON.

1. Information must be authoritative


Our Team
  (12 Jul 2013) - Link

For the collaborative platform:
Molly Cotter Community Moderator
Liz Morgan Community Team Manager
Emma Willey Community Moderator
Sarah Mack Community Moderator
http://www.patientslikeme.com/community/admins

While some community areas in the Member Area are monitored periodically for topicality, PatientsLikeMe has no obligation to prescreen postings and is not responsible for their content. We encourage you to notify us of inappropriate or illegal content and we reserve the right to remove postings for any reason.

(12 Jul 2013) - Link

2. Presentation of the site
Mission:
Today, PatientsLikeMe is a for-profit company, but not one with a “just for profit” mission. We follow four core values: putting patients first, promoting transparency (“no surprises”), fostering openness and creating “wow.” We’re guided by these values as we continually enhance our platform, where patients can share and learn from real-world, outcome-based health data.
  (12 Jul 2013) - Link

For the collaborative platform:

PatientsLikeMe is committed to putting patients first. We do this by providing a better, more effective way for you to share your real-world health experiences in order to help yourself, other patients like you and organizations that focus on your conditions.
(05 Feb 2013) - Link

Audience:
Today, PatientsLikeMe is a for-profit company, but not one with a “just for profit” mission. We follow four core values: putting patients first, promoting transparency (“no surprises”), fostering openness and creating “wow.” We’re guided by these values as we continually enhance our platform, where patients can share and learn from real-world, outcome-based health data.
  (12 Jul 2013) - Link

For the collaborative platform:

To become a member and access the area on this Site reserved for members (the “Member Area”), PatientsLikeMe requires that you are either a (a) diagnosed patient of the particular community you are joining or a parent or legal guardian acting for such a patient who is under 18 years of age or incapacitated, (b) caregiver for a patient eligible to join such community, (c) health care professional (e.g. doctor, nurse, health researcher, etc.), (d) guest with legitimate, non-commercial reasons to participate in the community and who agrees to respect the privacy and preserve the dignity of all c... (05 Feb 2013) - Link

Purpose of the website
This Site Does Not Provide Medical Advice

All of the material provided on the Site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings, and any other material provided on the Site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of someth...
  (12 Jul 2013) - Link

For the collaborative platform:

This Site Does Not Provide Medical Advice

All of the material provided on the Site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings, and any other material provided on the Site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of someth...
(05 Feb 2013) - Link

3. Confidentiality
What kind of information we collect

Shared Data
Some of the information that Members provide about themselves may be shared with the PatientsLikeMe community, Partners, and others (“Shared Data”). Examples of Shared Data that Members may submit at the Site, including through their health profile (“My Profile”), may include:

* Biographical information, e.g. photograph, biography, gender, age, location (city, state and country), general notes;
* Condition/disease information, e.g. diagnosis date, first symptom, family history;
* Treatment inf...
  (12 Jul 2013) - Link

For the collaborative platform:

Yes, you can modify or erase any of your forum posts at any time by clicking ‘Edit’ underneath your post. A post cannot be blank, but you may put any filler text in the text field (e.g., “deleted” or “amended”).
(12 Jul 2013) - Link

4. Information must be documented: Referenced and dated
Only data for one sample are displayed among those selected.
Every effort has been made to ensure that the information provided by Cerner Multum, Inc. ('Multum') is accurate, up-to-date, and complete, but no guarantee is made to that effect.
  (12 Jul 2013) - Link

For the collaborative platform:

We encourage members to share relevant news stories, journal articles, and blog posts with the community. We do ask that members include a reference or link back to the source.
(12 Jul 2013) - Link

About and policy pages also dated:
e.g. https://www.patientslikeme.com/about/team
Last updated: July 12, 2013
 
Last updated: July 12, 2013
  (12 Jul 2013) - Link

For the collaborative platform:

Feb 5, 2013 09:08AM
(05 Feb 2013) - Link

5. Justification of claims
ok, all necessary info provided
Gabapentin Treatment Report

What is Gabapentin?
Precautions
Instructions
Side Effects
Interactions
Other names

  (12 Jul 2013) - Link

For the collaborative platform:

All members represent and warrant that the information they provided when registering as a member, and all information that they subsequently provide regarding themselves and their membership, is true and accurate and not misleading.
(05 Feb 2013) - Link

6. User support and adequation
Contact Us
Mailing address:
PatientsLikeMe Inc.
155 Second Street
Cambridge, MA 02141

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  (12 Jul 2013) - Link

For the collaborative platform:

Contact Us
Mailing address:
PatientsLikeMe Inc.
155 Second Street
Cambridge, MA 02141

support@patientslikeme.com
(05 Feb 2013) - Link

7. Disclosure of funding sources


We take the information patients like you share about your experience with the disease and sell it to our partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance, and medical services. Except for the restricted personal information you entered when registering for the site, you should expect that every piece of information you submit (even if it is not currently displayed) may be shared with our partners and any member of PatientsLikeMe, including other patients. We do not rent, sell or share personally identifiable information for marketing purposes or without explicit consent. Because we believe in transparency, we tell our members exactly what we do and do not do with their data.

By selling this data and engaging our partners in conversations about patient needs, we're helping them better understand the real world medical value of their products so they can improve them. We are also helping companies accelerate the development of new solutions for patients.

PatientsLikeMe is a for-profit company (with a not-just-for-profit attitude). Every partnership we develop must bring us closer to aligning patient and industry interests. Our end goal is improved patient care and quality of life.


Investors
CommerceNet

An invaluable part of PatientsLikeMe's success, CommerceNet provided the seed capital, guidance, additional management experience, and key connections to help kick start PatientsLikeMe. CommerceNet's innovative model combines the best elements of a research lab, startup incubator and public interest initiative. Its mission is to make the world a better place by fulfilling the promise of the Internet and ecommerce. CommerceNet's Founder and Chairman, Dr. Jay 'Marty' Tenenbaum, is personally involved with PatientsLikeMe as a board member and advis...
  (12 Jul 2013) - Link

For the collaborative platform:
Moderators are members of the team.


Molly Cotter Community Moderator
Liz Morgan Community Team Manager
Emma Willey Community Moderator
Sarah Mack Community Moderator
(05 Feb 2013) - Link

8. Advertising policy
We're not pursuing an ad-based business model right now. We want to preserve the sanctity of your experience on the site. Our business is based on aligning your interests as patients with industry interests. To do this, we share your data and experiences with industry to help them better understand the real world course of diseases.
  (12 Jul 2013) - Link

For the collaborative platform:

The Site content, including the Member Area and the content and information contained in the Member Area, is for the personal use of individual members only and may not be used in connection with any commercial endeavors. Organizations, companies, and/or businesses may not become members and should not use the Site without express consent from PatientsLikeMe. Members of PatientsLikeMe with individual commercial interests may not solicit or overtly promote their products or services within the Member Area. All content shared within the site is not for external use.
(05 Feb 2013) - Link

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