Saarathi Patent forum (www.saarathihealthcare.com/patientforum) is a sharing forum. The forum has been created for patients, practitioners and caregivers who want to share and discuss their knowledge experience and opinions about disease, treatments and other related health information. It is our endeavor, to outline the benefits and risks of being part of this sharing forum, including those related to privacy.
The information we collect
Members data that is shared with other members of the forum and other third parties, like pharmaceutical companies, non-profits, and research institutions include:
- Biographical information, e.g, 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,
- Laboratory results and biomarkers,
- 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.
While sharing information the members may share information that could be used to identify them. When this information is shared via free text the information will be considered as part of shared data. (e.g. treatment evaluations, symptoms, journals etc)
Some of the information that Members enter into certain fields when registering to use the forum will not be shared (“Restricted Data”). The type of Restricted Data 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
- 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 the registration process the information will be treated as Restricted Data.
All forms of shared data except restricted data may be shared with other members and third parties at some point in time. The possibility of a member being located or identified will increase with the amount information being shared by the member.
Instances where shared and restricted data may be used
Shared Data and Restricted Data, including Personal Information, may be used and disclosed including, but not limited to, the following:
- Saarathi Patient forum uses Shared Data, Restricted Data, and Site Usage internally, as needed, for research, for maintenance and operation of the Site, and to create the best possible tools and functionality for patients.
- Saarathi Patient Forum may use a Member’s data in the case of an emergency to directly contact the Member.
- Saarathi Patient forum may share or disclose a Member’s data where required by law or to comply with legal process.
- In the event Saarathi 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 forum Members. In some instances, this Shared Data is also viewable to those not registered to join forum (“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.
In addition to serving the individual needs of our Members, the forum and its Partners are interested in better understanding the patient experience and improving treatment options and health outcomes for everyone. Hence we may share data, in individual and aggregate format, to Partners and other third parties for use in scientific research and market research. When selling this information, Saarathi Patent forum removes Members’ Restricted Data to reduce the likelihood of re-identification prior to sharing information with Partners.
Forum 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.
Saarathi Patient forum 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 explicitly opts in to have their Restricted Data shared with a Partner, Saarathi Patient forum will share the information as instructed by the Member
- If a Member makes a request, Saarathi Patient forum 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 etc
Other security issues
Saarathi Patient forum 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 Saarathi Patient forum takes commercially reasonable technical precautions to help keep Member data secure.
Risks and benefits
While our goal is to help patients improve health outcomes, there are no certain benefits to using this forum. However, keeping track of personal well-being, treatments, and symptoms may be helpful in improving overall health.
There are also no known risks to using this forum, but there is a possibility that users may feel uncomfortable sharing information online. It is possible that a Member could be identified using information shared on Saarathi Patient forum and/or in conjunction with other data sources. A Member could be discriminated against or experience repercussions as a result of the information shared. For example, it is possible that employers, insurance companies, or others may discriminate based on health information.
In using the Site, Members are free to skip any non-required questions or data fields that make them feel uncomfortable. Members are also free to stop using this service at any time. If a Member chooses to deactivate his/her account, Saarathi Patient forum will not display or sell the data in that account as of the date of deactivation. However, the Member’s data will remain in the system for auditing purposes, and research conducted prior to the deactivation of a Member’s account will still include the Member’s data.
Saarathi Healthcare private Limited
431/432 Lodhasupremus 2
A wing, Road No. 22
Pincode – 400604
Tel: 022 – 61391995