The Patient Innovation Vision

We developed the Patient Innovation website located in https://patient-innovation.com/ with the User in mind. Please take a moment to familiarize yourself with the content of this document and let us know if you have any questions.

Our research has shown that patients of chronic diseases have developed a significant number of innovative treatments and medical devices to help them cope with their health condition. For example, in the specific case of rare diseases, some patients have developed innovative solutions for themselves. Individuals who have to deal with long-lasting conditions and everyday challenges often develop valuable innovations in medical treatments and devices to help them cope with their condition and individual needs. These innovations improve their quality of life and may provide treatment for their symptoms and diseases, sometimes even saving their own lives. However, these innovations usually occur behind closed doors and might never be known or used by anyone else. We are building this website to diffuse solutions and knowledge amongst patients with similar needs since we believe this could improve the lives of many others.

This Website is an international, multilingual, totally free-of-charge venue for patients and caregivers of any disease to share their innovations within the community. This Website is the result of the joint research and international cooperation of scholars (from
the health sciences, management, economics, engineering and law), healthcare practitioners and institutions that are committed to help promote knowledge and possible solutions that may be able to improve Patients’ well being. Patients or caregivers deal with challenges imposed by their health condition and are free to share in this Website proposed solutions (henceforth referred to as “solutions”). In this context, solutions include (but are not limited to) new or modified devices or medical aids, strategies, behaviors, treatments, or low-cost alternatives to existing solutions. They may be fully developed, partially developed, or just an idea. The knowledge is valuable for the community even if the solutions did not work as intended: other patients may jump-in to give their feedback or improve them.

This website promotes openness and transparency by giving individuals greater power to share their solutions and connect with each other to live a better life. Achieving this vision should be constrained only by limitations of law, technology, and evolving social norms.

Disclaimer

• The Website is self-managed by the community of contributors, and neither the Owner nor any other organization or institution linked to the Website is responsible for the solutions contributed, as well as for any comments and recommendations posted.
• We explicitly point out that these solutions may be contributions of laypeople and are original and of their authorship, not necessarily validated by any formal and authorized body, and are not known to have been medically tested by professionals nor are they known to be scientifically accurate or effective.
• The Website is self-managed by the community of contributors and the management team does not control, nor monitor, nor is responsible for the quality of the submitted solutions (ideas and concepts) or recommendations. Notwithstanding, if the Website management team gains knowledge of any content that infringes the Terms of Service below it may choose to remove such content.
• No individual or organization related to the Website is liable for damages resulting from the reproduction, imitation of solutions or the implementation of recommendations, namely for any serious health consequences suffered by the User, including death.

Terms of Service

This agreement was written in English (US). To the extent any translated version of this agreement conflicts with the English version, the English version shall prevail.

Patient Innovation uses an automatic translation service. We are not responsible for any consequences that may arise from incorrect translation of solutions, recommendations or any other information posted on the Website.

Date of Last Revision: December 17, 2020

These Terms of Service apply to the Patient Innovation website, located in https://patient-innovation.com/ and accessible either directly or through a Facebook application.

These Terms of Service derive from the Patient Innovation Vision, and govern all use of the Patient Innovation website (hereinunder, the Website) and its services, as well as our relationship with Patients, Users and others who access or interact with this website (henceforth, the Users).

Please read these Terms of Service carefully before accessing or using the Website. Please note that by using or accessing this website you fully and knowingly agree to these Terms of Service. If you do not agree to all the terms and conditions, then you may not access the Website or use any services. The Website is available only to individuals who are at least 18 years old.

The Website and all of its contents are the property of Associação Patient Innovation henceforth referred to as the Owner.

AGE RESTRICTION

• Registration and participation on the Website is restricted to those individuals over 18 years of age, emancipated minors, or those who possess legal parental or guardian consent, and are fully able and competent to enter into the terms, conditions, obligations, affirmations, representations and warranties herein.
• We do not knowingly collect personal data from people under 18 years old. If we learn that we have collected the personal data of a person under 18 years old, we will take steps to delete the data as soon as possible.

ACCESS TO THE WEBSITE

• Without prejudice to the age restriction mentioned above, the only prerequisite for participation in submitting a solution, seeing the solutions of others, or otherwise using the Website is to register in the Website.

INTELLECTUAL PROPERTY AND USAGE RIGHTS

• By submitting your solutions, you acknowledge and accept that your solutions can be freely viewed, transmitted and used by others without the payment of royalties, reimbursements or any other type of compensation by any individual who accesses the Website.
• If you would like to protect your intellectual property, please consider doing so before submitting it to this application and sharing it with others.
• By sharing any solutions, data or any other information on the Website, you acknowledge and accept that it may be used as a part of academic research, training or consulting by the institutions that contributed to design and implement the Website, namely for obtaining a better understanding of innovation amongst patients.
• By submitting a solution to the Website the contributor agrees to grant, free of charge, the following rights with no limit in duration: unrestricted and irrevocable use, reproduction and distribution of the contribution, especially in radio and television, publications, promotional materials, printing works and the Internet.
• The Owner or any other company related to it or to the Website are not liable for any violations of the User’s intellectual property rights.

USER RESPONSIBILITY

• People who contribute with their solutions and comments to the Website agree to take personal responsibility for all issues related to their posts and comments.

REMUNERATION

• The authors and the contributors of the solutions and/or recommendations are not entitled to any financial or other compensation by patient-innovation.com designers and providers.
• If a commercial use is desired, an individual agreement between the submitter and the potential implementation partners is necessary outside of the control/reach of this Website and with no involvement from the Patient Innovation team.

APPLICABLE LAW AND JURISDICTION

• These Terms of Service shall be deemed to have been executed in Lisbon, Portugal, and are governed by and construed in accordance with the internal substantive and procedural laws of Portugal without regard to conflict of laws or principles.
• Unless expressly stated otherwise, all disputes arising out of or relating in any way to this Agreement shall be resolved by binding arbitration in Lisbon, Portugal using the applicable rules of the European Arbitration Association, and judgment on the award rendered may be entered in any Court in Portugal.
• The User consents to the jurisdiction and venue of such courts, expressly waiving any objection to such jurisdiction and venue, and further consenting that any process, notice of motion or other application to such courts or a judge thereof may be served outside of Lisbon, Portugal by registered or certified mail or by personal service, provided that a reasonable time for appearance is allowed.

CHANGES TO THE TERMS OF SERVICE

• The Owner reserves the right to, unilaterally and at its sole discretion, change, modify, add or remove parts of these Terms of Service at any time. The user is notified, via email or notification, before the first use following the change.
• It is the User’s responsibility to check these Terms of Service periodically for changes.
• The continued use of the Website will suffice as acknowledgement and acceptance of any changes made to these Terms of Service.
• Nevertheless, changes to these Terms of Service may be publicly shared on the news stream of the Website and some changes may require express acknowledgement or acceptance of the user. The User understands that further access to the Website and to the User’s account may be denied if no such acknowledgment or acceptance is given.

Patient Innovation and the Owner are not responsible for any incorrect or inaccurate content posted on the Website or in connection with the Services. Profiles created and posted on this Website may contain links to other websites, and we are not responsible for the content, accuracy or opinions expressed on such websites. Under no circumstances shall Patient Innovation or the Owner be responsible for any loss or damage, including personal injury or death, resulting from use of the Services, attendance at any Patient Innovation event, from any content posted on or through the Services, or from the conduct of any users of the Services, whether online or offline. The Services are provided “AS-IS” and as available and Patient Innovation and the Owner expressly disclaim any warranty of fitness for a particular purpose or non-infringement. Patient Innovation cannot guarantee and does not promise any specific results from the use of the Services. TO THE MAXIMUM EXTENT PERMITTED BY APPLICABLE LAW, IN NO EVENT SHALL PATIENT INNOVATION BE LIABLE TO YOU OR ANY THIRD PARTY FOR ANY INDIRECT, CONSEQUENTIAL, EXEMPLARY OR INCIDENTAL DAMAGES, INCLUDING THE LOSS OF PROFIT AND DAMAGES ARISING FROM YOUR USE OF THE SERVICES, EVEN IF PATIENT INNOVATION HAS BEEN ADVISED OF THE POSSIBILITY OF SUCH DAMAGES.

1. Who is responsible for the User’s data?

Patient Innovation has developed this privacy policy because it values and respects the User’s privacy. This privacy policy applies to the personal data that Patient Innovation collects and uses. Patient Innovation therefore is the Data Controller of the processing of the User’s personal data.

2. What personal data are collected?

• When registering in the Website, the following information is required:
• Username (not necessarily your real name)
• Email
• Facebook (optional) – in this case, the data we collect are: your email, username and profile picture
• When using the Website, the user will provide the following information:
• Name of the disease and proposed solution and/or
• Comments regarding existing proposed solutions
• This Website does not have the possibility nor the aim of validating the “real identity” of users since pseudonyms or nicknames may be freely used to login and no identification is required.

3. How and Why the User’s personal data is used

• Patient Innovation collects and uses the User’s personal data for the following purposes:
• Identification of innovative solutions developed by patients and caregivers;
• Verifying the effectiveness and safety of solutions;
• Promotion of their development, effectiveness and safety, to facilitate their sharing by other patients and carers who may benefit from them.
• The legal basis for the processing activities carried out by Patient Innovation are the following:
• Consent of the data subject (e.g. for sending marketing communications);
• Fulfillment of contractual obligations based on these terms and conditions, and the fulfillment of legal obligations;
• Processing is necessary for the purposes of the legitimate interests pursued by the controller.

4. Data storage

The data will be stored through this Website at the Platform.sh premises and subject to the processing requirements of the Portuguese Data Protection Act (Law no. 58/2019 of August 8) and of the Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data (“GDPR”).

Patient Innovation will only store the User’s personal data for the time period necessary for the fulfillment of the purposes for which the data was collected. For more information, please contact us by email to info@patient-innovation.com

The personal data in this Website is explicitly destined for Users within this community and for research purposes. In the case of research purposes, the data will be anonymized before being analyzed

5. Data subjects’ rights

At any time, the User may exercise his data subject’s rights of access, rectification or erasure of personal data, of restriction of processing or of objection to the processing, as well as the right to data portability, by means of a written request and concerning a specific portion of data or eventually all of it. This request has to be addressed to info@patient-innovation.com or to:

Patient Innovation
CEDOC (Yellow Building)
Rua do Instituto Bacteriológico, no 5,
1150-190 Lisbon
Portugal

The User may revoke his/her consent at any time when this is the basis of legitimacy for the processing of his/her data through the contacts indicated above.

The User also has the right to lodge a complaint with a supervisory authority – in Portugal, before the National Data Protection Commission (CNPD).

6. Transfer of personal data

Data is not shared. They are only used for scientific research. The studies are done with aggregated data and in case studies informed consent is always requested from the innovators in question.

Since the data is stored on Platform.sh facilities, we only share the data with this entity.

Cookies and Other Technologies

• By using this Website you acknowledge and accept that this Website is using "cookies" and that they may be installed in your computer (including your smartphone, tablet or any other device used to access the Website).
• A cookie is a small file containing a string of characters that is sent to your computer when you visit a website. When you visit the website again, the cookie allows that website to recognize your browser.
• This technology helps us better understand the User’s behavior, telling us which parts of our Website people have visited, facilitating and measuring the effectiveness of web searches.
• iv. If you do not want cookies to be used, you should set your browser to block all cookies. However, it is important to remember that if you choose to do so some of our services may not function properly. For example, we may not remember your language preferences. For more information about the cookies, please refer to http://www.allaboutcookies.org.
• The Website use the following cookies:
• Cookie #1 – “ignite” is the cookie for the login name
• Cookie #2 – “_pk_[…]” is the analytics cookie. It can be up to 3 cookies with a random ending
• We process the data collected by cookies and other technologies as non-personal data. However, to the extent that Internet Protocol (IP) addresses or similar identifiers are considered personal data, we also process these identifiers as personal data. Similarly, to the extent that non-personal data is combined with personal data, we process the combined data as personal data for the purposes of this Privacy Policy.

If you have any questions or concerns about Patient Innovation’s Privacy Policy or data processing, please contact us at info@patient-innovation.com

• At Patient-innovation.com, we put great emphasis on respectful treatment among participants. These include:
• Goal-oriented communication, i.e. meaningful and relevant discussions
• Constructive criticism of the contributions of the other participants
• Respect and appreciation of the other participants and their opinions.
• If racist, adult, sexist, dehumanizing or similar remarks are reported by users, we reserve the right to remove this comment as a whole from this Website
• As the basis of this community, the users are not allowed to reveal or disclose information from other users in this Website without the explicit agreement of the latest, or unless this information is publicly available either on the internet or other supports

We encourage contributors to post only information that to the best of your knowledge is true and went through basic validation. In addition, links to commercial solutions or similar activities shall be used by the Users on a discretionary basis when appropriate and never with the objective of marketing a device/solution tool nor forcing Users to acquire such device/solution.

Since this Website gives people around the world the power to publish their own solutions and stories, we provide you with guidelines regarding what type of expression is acceptable, and what type of content may be reported and removed.

• Violence and Threats: We remove content and may escalate to law enforcement when we perceive a genuine risk of physical harm, or a direct threat to public safety. You may not credibly threaten others, or organize acts of real-world violence. We prohibit promoting, planning or celebrating any of your actions if they have, or could, result in financial harm to others, including theft and vandalism.
• Self-Harm: We remove any promotion or encouragement of self-mutilation, eating disorders or hard drug abuse.
• Bullying and Harassment: We allow users to share freely their solutions and stories, but take action on all reports of abusive behavior directed at private individuals. Repeatedly targeting other users with unwanted requests or messages is a form of harassment.
• Hate Speech: We do not permit individuals or groups to attack others based on their race, ethnicity, national origin, religion, sex, gender, sexual orientation, disability or medical condition.
• Graphic Content: When people share any solutions, we expect that they will share in a responsible manner. That includes choosing carefully the audience for the content. For graphic videos and images, people should warn their audience about the nature of the content in the video so that their audience can make an informed choice about whether to watch it.
• Phishing and Spam: We ask that you respect our members by not contacting them for commercial purposes without their consent.