Certificate of compliance

PatientsLikeMe

is in compliance with the HONcode

Logo certificat HONCode
5 Years

Certificate validity 12 Jul 2013 - Jul 2015

www.patientslikeme.com Visit website

Logo certificat HONCode
HONcode identification number:

HONConduct682674

Date of initial review:

08 Jan 2008

Certificate validity

12 Jul 2013 - Jul 2015

Date of last visit:

29 Mar 2016
See the HONcode seal on the site

Content identified by the HONcode team

The content below is a sample of the content identified at a specific date by the HONcode team that justifies the respect of the eight ethical principles.

Our Team
 

(12 Jul 2013) - Link

Collaborative platforms:
Molly Cotter Community Moderator
Liz Morgan Community Team Manager
Emma Willey Community Moderator
Sarah Mack Community Moderator
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

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 something you have read on this Site.
 

(12 Jul 2013) - Link

Collaborative platforms:

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 something you have read on this Site.
If you think you may have a medical emergency, call your doctor or 911 immediately. PatientsLikeMe does not recommend or endorse any specific tests, physicians, products, procedures, opinions, or other information that may be mentioned on the Site. Reliance on any information provided by PatientsLikeMe, by persons appearing on the Site at the invitation of PatientsLikeMe, or by other members is solely at your own risk.

(05 Feb 2013) - Link

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 information, e.g. treatment start dates, stop dates, dosages, side effects, treatment evaluations;
* Symptom information, e.g. severity, duration;
* Primary and secondary outcome scores over time, e.g. ALSFRS-R, MSRS, PDRS, FVC, PFRS, Mood Map, Quality of Life, weight, InstantMe;
* Laboratory results, e.g. CD-4 count, viral load, creatinine;
* Genetic information, e.g. information on individual genes and/or entire genetic scans;
* Individual and aggregated survey responses;
* Information shared via free text fields, e.g. the forum, treatment evaluations, surveys, annotations, journals, feeds, adverse event reports; and
* Connections to other people on the Site, e.g. invited care team member, mentors, feeds, subscriptions.
In the course of using the Site, Members may share information that could be used to reasonably identify them (“Personal Information”), including name, photograph, and email address. When a Member chooses to share Personal Information via a free text field (e.g. forum, treatment evaluations, annotations, journals, feeds and adverse event reports) and photos or images, the information shall be treated as Shared Data.
Restricted Data
Some of the information that Members enter into certain fields when registering to use or using the Site will not be shared (“Restricted Data”). The type of Restricted Data that Members may submit at the Site may include:
* Name, as collected as part of registration or in a Member’s Account Information;
* Email address, as collected and verified as part of registration or in a Member’s Account Information;
* Password, as collected as part of registration or in a Member’s Account Information;
* Mailing address, as collected via email, forms, or private message as part of Member programs such as t-shirt giveaways and PatientsLikeMeInMotion™;
* Date of birth, as collected in My Profile; and
* Private messages.
When a Member enters Personal Information, including name and email address, as part of registering to use PatientsLikeMe, that Personal Information is treated as Restricted Data.
Cookies
A cookie is a small data file that often includes an anonymous, unique token, which is sent to your browser from a website’s computers and may be stored on your computer’s hard drive. Two types of cookies are required to use the Site:
* Session Cookies are temporary cookies that remain only until you log out of the website or exit your web browser. Session Cookies do not store any Personal Information, only a unique visitor ID number that may be used to ensure Members are properly authenticated and can view site information.
* Persistent Cookies remain in the cookie file of your browser for much longer, even after you leave the Site. Persistent Cookies also do not store any Personal Information. Persistent Cookies store preferences that should persist from visit to visit, like “Remember Me,” and a unique token to enable us to understand how Members use the Site.
How your shared and restricted data is used
Members should expect that every piece of information they submit (even if it is not currently displayed), except for Restricted Data, may be shared with the community, other patients, and Partners. Members are encouraged to share health information but should consider that the more information that is entered, the more likely it is that a Member could be located or identified.
There are instances where both Shared Data and Restricted Data, including Personal Information, may be used and disclosed including, but not limited to, the following:
* PatientsLikeMe uses both Shared Data and Restricted Data internally, as needed, for research, for maintenance and operation of the Site, and to create the best possible tools and functionality for patients.
* PatientsLikeMe may use a Member’s data in the case of an emergency or other circumstance that we determine requires a member of the management team to directly contact the Member.
* PatientsLikeMe may share or disclose a Member’s data where required by law or to comply with legal process.
* In the event PatientsLikeMe goes through a business transition, such as a merger, acquisition by another organization, or sale of all or a portion of its assets, the Shared Data and Restricted Data, including Personal Information, might be among the assets transferred. Members will be notified via this Site of any such change in ownership or control of Personal Information.
How Shared Data is Used
Shared Data is viewable via My Profile and through aggregated reports that are made available to other PatientsLikeMe Members. In some instances, this Shared Data is also viewable to those not registered to join PatientsLikeMe (“Non-members”). We report publicly Shared Data in aggregate, such as the number of patients on a particular treatment or the number of patients experiencing a particular symptom (see public Treatment and Symptom Reports). If a Member chooses to designate My Profile as “Public” (see Privacy Settings below), their Shared Data can also be viewed by Non-members and linked with aggregated reports.
In addition to serving the individual needs of our Members, PatientsLikeMe and its Partners are interested in better understanding the patient experience and improving treatment options and health outcomes for everyone. For example, we may look at questions such as, “Do certain treatments work better for some types of people versus others?” PatientsLikeMe provides Shared Data, in individual and aggregate format, to Partners and other third parties for use in scientific research and market research. When selling this information, PatientsLikeMe removes Members’ Restricted Data to reduce the likelihood of re-identification prior to sharing information with Partners.
PatientsLikeMe also provides a voluntary opt-in service to allow Partners to directly communicate with Members through our system.
PatientsLikeMe may also periodically ask Members to complete short surveys about their experiences (including questions about products and services). Survey responses are analyzed, combined with Members’ Shared Data and shared with and/or sold to Partners. Member participation in these surveys is not required, and refusal to do so will not impact a Member’s experience on the Site.
PatientsLikeMe may also report individual adverse event and drug safety information to the FDA, CDC, and/or other regulatory bodies (U.S. and international) as well as directly to pharmaceutical and biotechnology companies. PatientsLikeMe does not provide Restricted Data to such regulatory bodies, although we reserve the right to contact Members for follow-up at the request of agencies or Partners. The information PatientsLikeMe reports includes, but is not limited to, all of the information about the Member and/or free text or images on the forums or evaluations, which may include Shared Data. In addition, certain areas within our Site are provided with the support of Partners. These Partners may have adverse event reporting requirements that relate to regulated products that are used by Members of our community, and PatientsLikeMe assists such Partners with reporting adverse events to regulatory agencies.
PatientsLikeMe, like most Internet communities, is a public forum, and Members acknowledge and accept that any information shared through free text or images might be connected to Members’ Shared Data (which may be shared with, sold to, or displayed for others). For example, if a Member puts his or her name (or other Personal Information) into a free text field like the biography, forum, journals or annotations, the Member should know this information may be included in what is shared with, displayed for, or sold to
Partners.
How Restricted Data is Used
Restricted Data is not automatically shared with, sold to, or displayed for other Members or Partners. Specific instances where Restricted Data may be used include, but are not limited to, the following:
* If a Member provides a date of birth, the Member’s current age will be viewable via My Profile;
* If a Member registers with, or is switched to, an official doctor and research account, the Member’s full name and affiliation will be viewable via
My Profile;
* If a Member chooses the Public privacy setting (see below), PatientsLikeMe and others may use public profiles in reports, conference presentations, media mentions, etc.;
* If a Member agrees to participate in a media interview (as arranged by PatientsLikeMe), PatientsLikeMe will share the contact information the Member provides (i.e. name, email, telephone) with the reporter for the purpose of conducting an interview;
* If a Member OPTS IN to a public registry (e.g. the PatientsLikeMe ALS Public Registry), PatientsLikeMe will display the Member’s name and some Shared Data and/or Restricted Data as part of this registry (which is viewable by anyone on the Internet);
* If a Member explicitly opts in to have their Restricted Data shared with a Partner, PatientsLikeMe will share the information as instructed by the Member (e.g. co-registration with a non-profit);
* If a Member makes a request, PatientsLikeMe may use Restricted Data, including sharing the Member’s Restricted Data with software/service vendors, for the purpose of fulfilling the request. Examples include requesting to receive the company newsletter via email, requesting an email response from the PatientsLikeMe support team, and requesting a t-shirt be mailed to the Member’s residence.
Privacy settings
There are two privacy levels a Member may choose for participation at
PatientsLikeMe:
* Visible: Only PatientsLikeMe Members can see My Profile and user name, and can contact you through PatientsLikeMe;
* Public: Non-members and Members can see My Profile and user name, but only PatientsLikeMe Members can contact you through PatientsLikeMe.
Members may change their privacy level at any time. Public profiles may be indexed or stored by Internet search engines (e.g. Google) or other independent sites, which means a Member’s Shared Data, including any Personal Information shared, may come up in the search results by anyone on the Internet, even after switching privacy levels.
Because the value of PatientsLikeMe is in sharing one’s experiences to help others, we hope that Members feel comfortable enough to make their profiles as public as possible.
Other security issues
PatientsLikeMe cannot guarantee the identity of any other Members with whom a Member may interact in the course of using the Site or who may have access to a Member’s Shared Data. Additionally, we cannot guarantee the authenticity of any data that Members may provide about themselves.
Finally, Members should know that PatientsLikeMe takes commercially reasonable technical precautions to help keep Member data secure.
 

(12 Jul 2013) - Link

Collaborative platforms:

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

The data displayed correspond to only one of the selected samples.

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

Collaborative platforms:

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. www.patientslikeme.com/about/team
Last updated: July 12, 2013
 

Last updated: July 12, 2013
 

(12 Jul 2013) - Link

Collaborative platforms:

Feb 5, 2013 09:08AM

(05 Feb 2013) - Link

ok, all necessary info provided

Gabapentin Treatment Report
What is Gabapentin?
Precautions
Instructions
Side Effects
Interactions
Other names
 

(12 Jul 2013) - Link

Collaborative platforms:

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

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

 

(12 Jul 2013) - Link

Collaborative platforms:

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

(05 Feb 2013) - Link


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 advisor.
Omidyar Network
Omidyar Network is a mission-based investment group committed to fostering individual self-empowerment on a global scale. Established in 2004 by Pierre and Pam Omidyar, the Network derives its focus and values from Pierre's experience as founder of eBay.
Collaborative Seed and Growth Partners, LLC
Collaborative Seed and Growth Partners, LLC, is a company investing in the commercialization of early-stage technology.
Invus, LP
Invus is a New York-based investment firm with over $4B of capital in an evergreen structure. Over its 24-year history, Invus has guided more than 80 portfolio companies in a wide range of industries, including consumer packaged goods, consumer services, specialty retailing, software, telecommunications, medical devices, and biotechnology.
 

(12 Jul 2013) - Link

Collaborative platforms:
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

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

Collaborative platforms:

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

The content of this certificate has been collected by the HON Foundation and may not be used without HON's express consent.

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The HONcode's significance

The Health On the Net (HON) certificate guarantees that this website complies with the eight principles of the HON Foundation's Code of Conduct at the date indicated above. The persons responsible for the site commit to maintaining its compliance with the HONcode principles for the duration of the site’s certification.

However, despite the complaint system that has been put in place and the periodic review and automatic monitoring of certified sites to ensure maximum compliance with the HONcode ethical principles, it is impossible to eliminate all risks of incoherence that may appear.

Under no circumstances shall the HON Foundation and/or its partner(s) be held liable for any damages resulting from the use or the inability to use HONcode-certified websites. Similarly, the HON Foundation and/or its partner(s) shall not be held liable for the content of such certified websites or any other website accessible via a hypertext link or through third-party information.

Those responsible for the certified website are responsible for the content of the website unless otherwise provided by law.

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