Frequently Asked Questions
What is Responsum and is it for me?
First and foremost, Responsum is for Pulmonary Fibrosis patients who want to keep on top of all the news about the latest discoveries, treatments and patient-centered advice, including how to live your life with the disease. Whereas searching the Internet for information can be overwhelming, and the results may be inaccurate or irrelevant to you, Responsum provides users with an individually personalized stream of easy-to-understand article summaries, healthy living tips and patient advice. All just for people with Pulmonary Fibrosis.
Partnering with the Pulmonary Fibrosis Foundation, the foremost experts and advocates for patients with IPF, Responsum for IPF allows patients, their loved ones, and their caregivers to stay informed, get smart, and become stronger advocates for themselves as they negotiate the many challenges that come with living with IPF.
And in addition to serving up useful new information on a daily basis, Responsum provides some great organizational tools - like an appointments calendar, a patient “one-sheet” to facilitate doctor visits, and access to information on clinical trials and financial assistance – all designed to make your life easier.
How does Responsum work? What are its features?
Responsum’s most powerful feature is the Newsfeed. The Responsum Newsfeed delivers to each user a customized stream of information collected from across the Internet and summarized to make things easy and quick to read and understand. Everyday, we comprehensively and automatically search the web for any new content about Pulmonary Fibrosis, so you don’t have to.
The constantly growing Responsum Library includes hundreds of articles, blog posts, press releases and videos – all summarized and “key word” tagged to make them easier to sort, read and understand. The more information you share about your status, health or preferences – the better Responsum is able to “tune” your Newsfeed to deliver those article summaries that are most likely to interest you.
The Newsfeed also includes a place to organize your saved articles, topics and medical term definitions that is called My Notebook, as well as a Calendar to track upcoming medical appointments.
Responsum’s My Profile page allows you to keep information about your life and health related goals, as well as your symptoms and comorbidities, easily organized and sharable with your loved ones, caregivers or healthcare providers. This can make it easier to track your progress and your care.
Responsum’s My Care page is the place where you can keep all the important contact information about your care team, as well as current medications and treatments. It also serves as an “electronic wallet” where you can easily upload and organize the paper reports, files and test results you receive from your healthcare providers. This will come in real handy the next time you see a new doctor for the first time and he or she asks to see your past lab results!
As part of the My Care section, you can easily create your own “Patient One-Sheet” - a single, printable document that allows you to store and maintain all your basic information in one place – doctors, insurance info, medications and their dosages, diagnoses and other key data. Having all this information on a well-organized One-Sheet will make future visits to new doctors so much easier.
Finally, through the My Community section, you are invited to engage with the world around you, as well as draw upon the support, advice and wisdom that only other patients can provide. Through this section of Responsum, you can share, follow and review comments on Responsum article summaries from other IPF patients, caregivers and experts, as well as keep abreast of trending topics, articles and definitions.
My Community also makes it easy to find patient support groups and resources near you, seek financial assistance, and make you voice heard on Capitol Hill.
Is my data secure? Is it safe for me to share here?
Yes. The Health Insurance Portability and Accountability Act (HIPAA) sets the standard for sensitive patient data protection. Companies that deal with protected health information (PHI), including Responsum, are required to have physical, network, and process security measures in place and follow them to ensure HIPAA Compliance. As a HIPAA-compliant platform, Responsum takes appropriate Administrative, Physical, and Technical Safeguards to ensure the confidentiality, integrity, and security of protected health information (PHI). The HIPAA Privacy Rule requires strong safeguards to protect the privacy of personal health information, and sets limits and conditions on the uses and disclosures that may be made of such information without patient authorization. The Rule also grants patients rights over their health information, including rights to examine and obtain a copy of their health records, and to request corrections.
Also, while Responsum allows for users to maintain anonymity by setting up patient accounts under fictitious names, we ensure that community comments left on articles are respectful and reserve the right to suspend privileges of anyone who violates the rule.
What do you do with my Personal Information?
We use personal information that you provide to us in several ways. First, we use it to confirm your account, to better understand who is visiting our website and using the platform, and to enable us to present content in the Newsfeed that is customized to your profile.
And if a Responsum patient explicitly grants privileges to a loved one, caregiver or healthcare provider to see or edit their profile or Patient One-Sheet information, we will provide that access.
Otherwise, we do not share, sell, or otherwise disclose personal information that is individually identifiable (including your e-mail address or your personal information) to any entity without your prior consent or request, except as required by law. For example, we will not share our email list with other companies or organizations. We may, however, provide other entities with aggregated data about our users that does not contain contact or other individually identifiable personal information. Thus, for example, we may inform an organization of the number of Responsum users with a particular diagnosis or in a particular geographical region.
How is this different from other patient tools for Pulmonary Fibrosis patients?
Responsum is the only patient platform that monitors, searches and curates the Internet and then provides a personalized Newsfeed of article summaries that patients are encouraged to read, share and comment on. Additionally, Responsum wraps the Newsfeed into a comprehensive platform that enables patients to organize, schedule and share their health information with their Care Team, as well as find local patient support services and advocate for healthcare policies that impact their treatment.
Can I share this with my friend / supporters / doctor / specialist / caregiver? Can they participate too?
Yes. Responsum is intended to be used by a patient and their care team. This can include friends, family, professional caregivers or healthcare providers. Each patient has the ability to “grant (or rescind) privileges” to see or edit their Profile or other health information they enter into their personal platform. This is because some patients prefer to have a loved one manage their health information, or in this case, their Responsum account. Others may want to share articles or comments with their close friends. Further, some patients find that they want their doctors to have access to their Profile or their Newsfeed (for example), so that they can make sure that they are looped into the latest updates made available on the Internet.
Who determines the content I receive in my Newsfeed? How do I know it is unbiased?
Responsum’s medical experts treat each patient as a unique research project. For every user, Responsum searches and summarizes the most relevant information from the world’s leading medical journals, newswires, patient blogs, provider databases and clinical trial registries.
Responsum’s methods of research, analysis and writing are consistent with the highest standards of medical and legal research today. Companies or foundations that underwrite Responsum’s ability to provide this platform to patients through advertisements, grants or support are provided zero opportunity to influence the selection of content or the summaries we provide. Each patient’s Newsfeed is determined by their unique characteristics alone.
Any commercially developed content that we may provide, such as advertisements (if these are ever presented), will be clearly marked with the name of their sponsor.
Working with Responsum effectively puts some of the world’s leading researchers on your case, leaving you to concentrate your energies on bettering your health, or the health of your loved one.
How does Responsum get paid?
The Responsum platform and its services are provided free to patients and other users, but our costs are underwritten by a combination of supporters including foundations, companies and non-profits. Responsum is funded, in part, by companies that use some of the aggregated, de-identified health data that we collect from our users for research purposes, as well as from referral fees that we sometimes collect when Responsum patients sign up to participate in clinical trials. None of the for-profit companies that support Responsum have any influence over the editorial decisions we make in developing and distributing the content for the Newsfeed, however.
Are your moderators and curators paid?
Mostly, yes. Our Content Development team is comprised of a professional, paid group of medical professionals and experienced healthcare writers. Sometimes, our Newsfeed articles are provided as blog posts by IPF medical experts on a volunteer basis.
What can I do to suggest a new diagnosis for Responsum to support?
We hope that one day, there will be a Responsum for every patient with a chronic illness. We are always looking to develop partnerships with patients, patient groups, foundations and industry supporters in new therapeutic areas. Simply contact us with your suggestion and contact information.
Why did you call it Responsum?
Responsum is Latin for “answer,” as well as a term used in both Roman Catholic and Jewish traditions to describe answers provided by scholars on issues of great importance. For patients today, we hope that Responsum helps by providing a pathway to answers for their most important questions.
How can I contact Responsum?
To contact a human being at Responsum, simply send a message to us at info@responsum.com and someone will get back to you quickly.
First and foremost, Responsum is for Pulmonary Fibrosis patients who want to keep on top of all the news about the latest discoveries, treatments and patient-centered advice, including how to live your life with the disease. Whereas searching the Internet for information can be overwhelming, and the results may be inaccurate or irrelevant to you, Responsum provides users with an individually personalized stream of easy-to-understand article summaries, healthy living tips and patient advice. All just for people with Pulmonary Fibrosis.
Partnering with the Pulmonary Fibrosis Foundation, the foremost experts and advocates for patients with IPF, Responsum for IPF allows patients, their loved ones, and their caregivers to stay informed, get smart, and become stronger advocates for themselves as they negotiate the many challenges that come with living with IPF.
And in addition to serving up useful new information on a daily basis, Responsum provides some great organizational tools - like an appointments calendar, a patient “one-sheet” to facilitate doctor visits, and access to information on clinical trials and financial assistance – all designed to make your life easier.
How does Responsum work? What are its features?
Responsum’s most powerful feature is the Newsfeed. The Responsum Newsfeed delivers to each user a customized stream of information collected from across the Internet and summarized to make things easy and quick to read and understand. Everyday, we comprehensively and automatically search the web for any new content about Pulmonary Fibrosis, so you don’t have to.
The constantly growing Responsum Library includes hundreds of articles, blog posts, press releases and videos – all summarized and “key word” tagged to make them easier to sort, read and understand. The more information you share about your status, health or preferences – the better Responsum is able to “tune” your Newsfeed to deliver those article summaries that are most likely to interest you.
The Newsfeed also includes a place to organize your saved articles, topics and medical term definitions that is called My Notebook, as well as a Calendar to track upcoming medical appointments.
Responsum’s My Profile page allows you to keep information about your life and health related goals, as well as your symptoms and comorbidities, easily organized and sharable with your loved ones, caregivers or healthcare providers. This can make it easier to track your progress and your care.
Responsum’s My Care page is the place where you can keep all the important contact information about your care team, as well as current medications and treatments. It also serves as an “electronic wallet” where you can easily upload and organize the paper reports, files and test results you receive from your healthcare providers. This will come in real handy the next time you see a new doctor for the first time and he or she asks to see your past lab results!
As part of the My Care section, you can easily create your own “Patient One-Sheet” - a single, printable document that allows you to store and maintain all your basic information in one place – doctors, insurance info, medications and their dosages, diagnoses and other key data. Having all this information on a well-organized One-Sheet will make future visits to new doctors so much easier.
Finally, through the My Community section, you are invited to engage with the world around you, as well as draw upon the support, advice and wisdom that only other patients can provide. Through this section of Responsum, you can share, follow and review comments on Responsum article summaries from other IPF patients, caregivers and experts, as well as keep abreast of trending topics, articles and definitions.
My Community also makes it easy to find patient support groups and resources near you, seek financial assistance, and make you voice heard on Capitol Hill.
Is my data secure? Is it safe for me to share here?
Yes. The Health Insurance Portability and Accountability Act (HIPAA) sets the standard for sensitive patient data protection. Companies that deal with protected health information (PHI), including Responsum, are required to have physical, network, and process security measures in place and follow them to ensure HIPAA Compliance. As a HIPAA-compliant platform, Responsum takes appropriate Administrative, Physical, and Technical Safeguards to ensure the confidentiality, integrity, and security of protected health information (PHI). The HIPAA Privacy Rule requires strong safeguards to protect the privacy of personal health information, and sets limits and conditions on the uses and disclosures that may be made of such information without patient authorization. The Rule also grants patients rights over their health information, including rights to examine and obtain a copy of their health records, and to request corrections.
Also, while Responsum allows for users to maintain anonymity by setting up patient accounts under fictitious names, we ensure that community comments left on articles are respectful and reserve the right to suspend privileges of anyone who violates the rule.
What do you do with my Personal Information?
We use personal information that you provide to us in several ways. First, we use it to confirm your account, to better understand who is visiting our website and using the platform, and to enable us to present content in the Newsfeed that is customized to your profile.
And if a Responsum patient explicitly grants privileges to a loved one, caregiver or healthcare provider to see or edit their profile or Patient One-Sheet information, we will provide that access.
Otherwise, we do not share, sell, or otherwise disclose personal information that is individually identifiable (including your e-mail address or your personal information) to any entity without your prior consent or request, except as required by law. For example, we will not share our email list with other companies or organizations. We may, however, provide other entities with aggregated data about our users that does not contain contact or other individually identifiable personal information. Thus, for example, we may inform an organization of the number of Responsum users with a particular diagnosis or in a particular geographical region.
How is this different from other patient tools for Pulmonary Fibrosis patients?
Responsum is the only patient platform that monitors, searches and curates the Internet and then provides a personalized Newsfeed of article summaries that patients are encouraged to read, share and comment on. Additionally, Responsum wraps the Newsfeed into a comprehensive platform that enables patients to organize, schedule and share their health information with their Care Team, as well as find local patient support services and advocate for healthcare policies that impact their treatment.
Can I share this with my friend / supporters / doctor / specialist / caregiver? Can they participate too?
Yes. Responsum is intended to be used by a patient and their care team. This can include friends, family, professional caregivers or healthcare providers. Each patient has the ability to “grant (or rescind) privileges” to see or edit their Profile or other health information they enter into their personal platform. This is because some patients prefer to have a loved one manage their health information, or in this case, their Responsum account. Others may want to share articles or comments with their close friends. Further, some patients find that they want their doctors to have access to their Profile or their Newsfeed (for example), so that they can make sure that they are looped into the latest updates made available on the Internet.
Who determines the content I receive in my Newsfeed? How do I know it is unbiased?
Responsum’s medical experts treat each patient as a unique research project. For every user, Responsum searches and summarizes the most relevant information from the world’s leading medical journals, newswires, patient blogs, provider databases and clinical trial registries.
Responsum’s methods of research, analysis and writing are consistent with the highest standards of medical and legal research today. Companies or foundations that underwrite Responsum’s ability to provide this platform to patients through advertisements, grants or support are provided zero opportunity to influence the selection of content or the summaries we provide. Each patient’s Newsfeed is determined by their unique characteristics alone.
Any commercially developed content that we may provide, such as advertisements (if these are ever presented), will be clearly marked with the name of their sponsor.
Working with Responsum effectively puts some of the world’s leading researchers on your case, leaving you to concentrate your energies on bettering your health, or the health of your loved one.
How does Responsum get paid?
The Responsum platform and its services are provided free to patients and other users, but our costs are underwritten by a combination of supporters including foundations, companies and non-profits. Responsum is funded, in part, by companies that use some of the aggregated, de-identified health data that we collect from our users for research purposes, as well as from referral fees that we sometimes collect when Responsum patients sign up to participate in clinical trials. None of the for-profit companies that support Responsum have any influence over the editorial decisions we make in developing and distributing the content for the Newsfeed, however.
Are your moderators and curators paid?
Mostly, yes. Our Content Development team is comprised of a professional, paid group of medical professionals and experienced healthcare writers. Sometimes, our Newsfeed articles are provided as blog posts by IPF medical experts on a volunteer basis.
What can I do to suggest a new diagnosis for Responsum to support?
We hope that one day, there will be a Responsum for every patient with a chronic illness. We are always looking to develop partnerships with patients, patient groups, foundations and industry supporters in new therapeutic areas. Simply contact us with your suggestion and contact information.
Why did you call it Responsum?
Responsum is Latin for “answer,” as well as a term used in both Roman Catholic and Jewish traditions to describe answers provided by scholars on issues of great importance. For patients today, we hope that Responsum helps by providing a pathway to answers for their most important questions.
How can I contact Responsum?
To contact a human being at Responsum, simply send a message to us at info@responsum.com and someone will get back to you quickly.