Frequently Asked Questions
The Patient Innovation platform is a social network (international, multilingual and non-profit) that aims to facilitate the sharing of innovative solutions developed by patients, caregivers and collaborators of any disease. The premise of this initiative is that in each patient and caregiver there is a significant innovative potential. In fact, we have found that patients and caregivers often develop very innovative solutions when dealing with the daily challenges of their pathologies. These innovations often end up "lost" and do not benefit other patients. The solutions can be new or modified devices or aids, strategies, behaviors, treatments, adaptations or low-cost alternatives to existing solutions. The solutions may be fully or partially developed, or still just an idea.
The biggest advantage of this platform is its network effect: the more patients, caregivers and/or collaborators that share their solutions, more information will be available to those who are looking for answers for their problems and the higher the potential value of each solution proposed is.
The Patient Innovation (PI) community is open to everyone. However, PI is especially focused on having members who are patients, caregivers and collaborators who have developed solutions to help them cope with a disease or health condition.
A patient is someone who suffers from a health condition, and created an innovative solution himself to deal with a challenge imposed by his own health condition.
A caregiver is a non professional caregiver who takes care of a loved one who suffers from a health condition or disease, who invented a solution to help them cope with their condition.
A collaborator is someone who was asked for help by someone suffering from a health problem, or by a caregiver. It can also be someone who just got inspired to help someone, for free, outside their family or circle of friends.
Eine „Lösung“ bei Patient Innovation ist etwas, was Patienten oder ihre Angehörigen bzw. ihr medizinisches Personal entwickeln, um sich den Herausforderungen ihres Gesundheitszustandes zu stellen. Es können z.B. Hilfsmittel, Alltagsstrategien, Verhaltensweisen, technische Geräte oder günstigere bzw. angepasste Alternativen bereits bestehender Lösungen sein. Diese Lösungen können bereits vollständig oder teilweise entwickelt sein oder auch erst eine Idee sein. Das Wissen ist wertvoll für die Gemeinschaft, selbst wenn die Lösungen nicht genauso funktionieren, wie zunächst erwartet. Auf diese Weise können andere Patienten die Idee weiterentwickeln und verbessern oder ihr Feedback geben. Jede Lösung wird vorab geprüft, um beleidigende oder unangebrachte Beiträge zu blockieren, ebenso wie kommerzielle Absichten, die nicht als Lösungsvorschlag eingestuft werden oder Lösungen die Drogen, Chemikalien oder biologische Präparate bzw. invasive Geräten beinhalten oder als gefährlich eingestuft werden.
Your problem might be the same problem of many other patients, caregivers and/or collaborators. So the solution you developed to your problem, could be the same solution to the problem of many others.
Patient Innovation is a unique tool full of solutions, tips and ideas proposed by patients, caregivers and/or collaborators who share the will to overcome the obstacles imposed by a given disease.
The platform works as a magazine that brings together solutions from all over the world, where each patient, caregiver and collaborator can find the latest solutions developed by others who are in the same situation. Sharing your solution, will help to update this journal, helping other people to solve their problems.
With your help, the Patient Innovation platform will always be on top of things.
Help us to potentiate this network! Sign up, post and share!
1. Go to our Homepage and click Log in (top right corner).
On the top of Homepage, click on Post a Solution. Then please fill the form. Tips - Start your post with an attractive title. Then you just have to write the description of your solution. Help others find your solution adding labels (keywords) to your solution post. You can even attach images and post video links from Youtube, Vimeo and Dailymotion that will automatically be embedded. When you’re finished, click on Post Solution and then select the box saying “To the best of my knowledge the content of this post conveys accurate and true information. The post does not contain any bad language, offensive content, inappropriate proposals, commercial or advertising intent, drugs, chemicals or something that is visibly and intrinsically dangerous. I am not disclosing my personal contacts (e.g. email, phone and address)”. Your solution will be carefully analyzed by the Patient Innovation medical team, and if it’s safe, it will go live.
1. Choose the category (Condition, Symptom, Location, Activities, Devices, Therapy) that best fits your solution.
2. After you choose a group you just have to click on Post Solution.
3. Start your post with an attractive title. Then you just have to write the description of your solution. Help others find your solution adding labels (keywords) to your solution post. You can even attach images and post video links from Youtube, Vimeo and Dailymotion that will automatically be embedded.
With these small steps you can help many patients!
Registering at Patient Innovation allows you to take advantage of all the available features offered on the platform. Registration entitles you to have access to the various communities of patients where you can share your solutions and receive suggestions/reviews by other members. Likewise, you will have access to all shared solutions.
Registration is fast and secure, only the username chosen for the registration will be shared with other members. Sign up now!
To start using Patient Innovation, you have to sign up first. It is easy and safe, do it here.
If you have signed up for Patient Innovation, here are some tips:
1. See what's happening!
All published solutions are grouped in categories, to be easier to find everything related to the same topic.
- Condition - solutions sorted by condition. What solutions were developed for individuals with paraplegia?
- Symptom - solutions are sorted by symptom. Are you looking for solutions for your unbearable headaches?
- Location - solutions related to a specific part of the human body. Do you have some trick to reduce hand tremor?
- Activities - solutions to overcome some obstacles inherent to a specific activity (walk, eat, shower...)
- Devices - all the devices sorted by type. You can search for wheelchairs or 3D printing devices, for instance.
- Therapy - solutions to overcome some problems during therapy. Like the bag pack developed by an 11-year-old girl to help her during chemotherapy.
3. Start Posting
The best way to engage is to contribute in a meaningful way. Post your solution, do not worry if it is too simple, as long as it helped you overcoming some issue, it is already a solution. Use labels (keywords) to make it easier to find! People who have the same problem will be grateful!
4. Comment, rate and share!
Comment existing solutions and show others that you care about them. Help them improving their solutions, give your feedback! Share your or other's solutions on Facebook!
You can bookmark your favorite groups and edit them in your Definitions, in the Profile section. You will receive an email notifying you whenever a post regarding a favorite is made for the latest solutions in your favorite groups!
Yes, you can edit your solutions anytime. Click on Profile, then My Settings, then Activities and you will see your solutions. You can also use the comments from the rest of the community to correct or complement it with further information.
The more detailed and visual, the more valuable will the solutions be to others. For this, we encourage patients to add the descriptions of their solutions with graphic elements, such as images (jpg, png and pdf) and videos (by pasting the link of a video from Youtube, Vimeo or Dailymotion).
Any user can register on the platform. By registering, users have full access to all the PI community, where they may share with others any solution they have developed, as well as browse solutions and strategies other users have created and shared with the community, comment and rate the solutions. Anyone can check all the solutions on the platform without being registered or logged in.
In your Profile, go to the Settings tab and in the Notifications box you can review or update your patient innovation email notifications preferences. These include notifications about: general news, news in your favorite groups and new comments on your solutions.
Bookmarks are your favorite groups, which you can bookmark in the right corner of every group page. The new solutions of your favorite groups will show up in your Wall, on your Profile, for quick access. Once you have bookmarked a few groups, you will have a new page of incredible solutions to read each time you log in.
The existence of a registration requirement enables the detection of violators of the rules of the community and the prevention of their participation. The platform has all the rules of use determined so that everyone know how to behave on the platform. Besides that, there is a triage system that doesn't allow the sharing of solutions which violate the Terms and Conditions.
Any solutions considered dangerous by any user may be reported to the Patient Innovation by clicking "Report" next to the solution.
The solution should be reported if its content seems to be dangerous, offensive or in any way disrespectful. The solution can also be reported as duplicate if it is an exact match to any other solution already existent in the Patient Innovation platform.
Only the username, which the participant chooses to register with, will be shared with other users. The remaining required data, which include only the email address and password, are encrypted for protection of the users. The project is collaborating with the CNDP (Portuguese Data Protection Agency) to ensure compliance with all data protection legal requirements.
The solutions will undergo a screening process that will identify and remove posts that are considered offensive or inappropriate, for commercial trade, that do not qualify as a solution proposal, that involve drugs, chemicals or biologics, that consist of invasive devices, or that are visibly and intrinsically dangerous. The platform and its promoters do not scientifically or in any other way validate the proposed solutions. Most solutions will be of a practical nature and may not require scientific validation, with no disregard to their importance in facilitating the day-by-day lives of patients and caregivers. Furthermore, the user community, that may include patients, health professionals and other individuals, will provide feedback through comments and informal ratings to the proposed solutions.
Users are responsible for any use or experimentation that they may have or do concerning the proposed solutions shown in the platform. Users are required to accept a Terms of Service document that lays out the rules that holds them responsible for the sharing and use of any content in the website. Users are incentivized to consult with their health professionals whenever in doubt.
The platform is managed both by the crowd and by a team that includes:
- Pedro Oliveira, Professor, Católica-Lisbon (Project Leader and Principal Investigator)
- Helena Canhão, Professor of Rheumatology, Lisbon Medical School and CHLN (Chief Medical Officer)
- Leid Zejnilovic (Research and Operations Officer)
- Salomé Azevedo (Platform Manager)
- Ana Duarte (Solutions Analyst and Communications Manager)
- Maria João Gonçalves (Medical Team)
- Miguel Nunes (Medical Team)
- Ulrike Martens (German Translator)
The executive team counts with a dedicated team responsible for decision implementation and daily management.
We currently support Portuguese, English and German. We plan on having the site in Spanish and French. Moreover, solutions can be posted in any language and will automatically be available in any one of those we currently provide. You can change your language in Settings, in your Profile.
The posts are automatically translated by Google Translate. The quality of the translations will mostly depend on the quality of the original posts, which are always available: click on “Translated from: (original language)” next to the solution. If you see a bad translation, report it so that our team can correct it.
The Patient Innovation team reviews all posts to ensure the translation quality.
This project is the result of multidisciplinary research, which involves the areas of management, health sciences, engineering and law. The investigation started in 2011, led by Católica Lisbon School of Business and Economics in partnership with MIT Sloan School of Management and Carnegie Melon University. Currently, in Portugal, the project also counts with the collaboration of the Instituto de Medicina Molecular and the Faculty of Medicine – University of Lisbon, through several collaborative research projects.
The project, founded and led by Prof. Pedro Oliveira in collaboration with Prof. Eric von Hippel from MIT, has received support from several reputed members of the scientific community, including Nobel laureates, notable academics of several scientific fields, patients and patient associations of several diseases, from the five continents.
The main fund providers are the Fundação para a Ciência e a Tecnologia (FCT) (FCT – Portuguese Science and Technology Foundation), the Peter Pribilla Foundation (Germany), the Carnegie Mellon Portugal Program and the MIT Portugal Program.
We have collaborated with doctors and scientists of the health sciences, in Portugal and abroad. As an example, the project includes as a Chief Medical Officer, Prof. Helena Canhão, a Rheumatologist in Hospital Center of North-Lisbon (CHLN) and a Professor at the Medical School of Lisbon. We are also in cooperation with more than dez patient associations in many countries, including Portugal, the UK, Australia, Malaysia, Croatia and Serbia.
Patient Innovation empowers patients, caregivers, and collaborators by giving them a place where they can share their solutions. The Patient Innovation Awards have been established to celebrate the innovators from our community who stood out with the impact and novelty of their solutions.
The Patient Innovation team makes a nomination of the innovations on the platform, and the Advisory Board selects the final winners. In the first edition of the Patient Innovation Awards we had six winners, and in the second we had seven. You can click here to know more about these awards.
The Patient Innovation Advisory board is a body that provides strategic advice to the management of the Patient Innovation project. It includes:
- Sir Richard Roberts;
- Prof. Eric von Hippel;
- Prof. Aaron Ciechanover;
- Prof. Katherine Strandburg;
- Prof. Robert Langer;
- Prof. Lee Fleming.
You can interact with the other users by commenting their posts. You can also send them a private message, by clicking on their username, and then on “Contact”. You can also engage in conversations with other users by creating a Forum topic. To create a Forum topic, go to Post a Solution, fill the form, and then on Type, select Forum Topic. Once it’s submitted, and reviewed by the Patient Innovation medical team, it will go live.