What is the initiative Tell us! all about?
The initiative Tell us! is part of the multi-year pioneer project Open Innovation in Science, launched by the Ludwig Boltzmann Society. It aims to transfer Open Innovation methods and principles into a scientific context, in order to improve work processes and practices. Scientists can better develop new solutions for society, the more they are accessing distributed knowledge. What this means in practice is specifically involving contributions from unusual sources and locations in the scientific knowledge process, for example: colleagues from other disciplines or at the other side of the world, citizens of different ages and from different professions, as well as users and practitioners. Opening the scientific process and cooperating across borders promotes science and increases its value for society. More information on the project can be found here: www.ois.lbg.ac.at
Why did the Ludwig Boltzmann Society start the initiative Tell us! ?
It is becoming increasingly important for research organisations to come up with new solutions that provide direct benefits to society. Thus, scientists need new partnerships, new forms of co-operation and new methods of generating and analysing data to solve society’s problems and generate really new insights and results. With the initiative Tell us! the Ludwig Boltzmann Society is carrying out pioneering work in Europe. Its goal is to integrate patients, doctors, therapists, carers and relatives into the research process in a novel way.
Why does the Ludwig Boltzmann Society specifically deal with mental illnesses?
The Ludwig Boltzmann Society selected the topic in a comprehensive evaluation process of different subject areas. Through the analysis of secondary data and interviews, the Ludwig Boltzmann Society identified the topic as a priority and consequently started the initiative – Tell us!
In summary, the following criteria were considered crucial for focussing on mental illnesses:
- Compared to other illnesses (e.g. cancer), little research is available on mental illnesses
- High prevalence and therefore a large degree of concern among the population – both directly, as well as indirectly, e.g. among close relatives
- All age groups and population strata are affected by mental illnesses
- High relevance to health policy: the consequences of mental illnesses have a drastic effect on society (e.g. early retirement, long-term sick leaves)
What is the goal of the initiative Tell us! ?
The initiative aims to identify unsolved questions and problems associated with mental illnesses through specifically involving various knowledge holders and subsequently, to integrate these into research work.The initiative does NOT attempt to provide ANY answers regarding medical questions, nor does it provide ANY diagnoses or ANY therapeutic recommendations. Medical help and therapeutic advice is provided by trained professionals .
Who can participate in the initiative Tell us! ?
As of 16 April 2015, everyone can participate in the initiative Tell us! - no matter whether someone is affected themselves, a family member is affected, you are a physician treating such illnesses, or are a therapist, and no matter where you live in the world; participation is open to all individuals who have reached the age of 18 (or the age of full legal responsibility in accordance with national regulations) or older at the time of registration.
Can I still participate in Tell us! even if I do not have internet access?
Unfortunately not. Internet access and a profile registration are a requirement for participating in the initiative Tell us! . Use of regular mail is excluded.
What kind of contributions is the Ludwig Boltzmann Society looking for?
In general, the Ludwig Boltzmann Society is looking for contributions that deal with open, unsolved issues or problems associated with mental illnesses:
The basic question is:
In your opinion, which issues regarding psychological disorders should science tackle?
Every fifth person experiences mental health problems at some point in his or her life. In order to shape research in accordance with the actual needs of society, we need your experience as a patient, family member, employer or expert:
- Which problems and unsolved issues do you observe in early detection and diagnosis of mental disorders?
- Which problems and unsolved issues do you observe in treating, caring for, and accompanying people with mental illnesses?
- Which problems and unsolved issues do you observe in preventing mental disorders?
The analysis team will not read the submitted contributions before the closing date (22nd of June 2015).
What is the timeline of Tell us! ?
The essential steps:
Opening date for submissions at www.redensiemit.org : 16 April 2015
Closing date of www.redensiemit.org : 16 June 2015
Analysis of all contributions submitted: During Fall 2015
Participant voting: as of the end of September 2015 (2 weeks)
Jury voting: October 2015 (1 day)
Presentation of the results: end of 2015 / beginning of 2016
What is the difference between Tell us! And conventional patient platforms/forums?
Conventional patient platforms/forums either provide an opportunity for exchange between patients or they are online portals offering medical advice. Tell Us! is a research project of the Ludwig Boltzmann Society and deals with open and unsolved issues and problems of those affected and interested in the topic of mental illnesses. These are collected, evaluated and fed back into the research process. The overall objective is to generate research topics that are new as well as particularly beneficial to society.
The platform does NOT serve to provide ANY answers regarding medical questions, nor does it provide ANY diagnoses or ANY therapeutic recommendations. Medical help and advice in association with mental illnesses are offered by trained professionals .
The platform offers a regular live chat. The topics of the live chat are determined by the registered participants. An expert on the respective topic will moderate the live chat and all registered participants are invited to participate.
How can I register on the platform as a new participant?
To register on the platform, a profile must be created. To create a profile, press the "Login" button on the top right. For registration, a username, password, valid e-mail address and the information about your role (e.g. patient, relative, therapist ...) is mandatory.
The password must contain at least 6 letters and 2 figures.
Fields marked with an asterisk (*) are mandatory. The optional fields allow a more comprehensive analysis of the data to take place and are very helpful for the initiative. To submit your entry, you must finally agree to the terms and conditions. To complete the registration you will receive an email with a link. Please confirm the link by clicking on it - this will activate your profile on Tell us!.
How can I login if I am already registered?
Click on the "Login" button on the top right and enter your access information that you have defined during registration (user name or e-mail address and password). Then click on "Login" and you're logged in.
What do I have to do if I forgot my password?
Click on the "Login" button on the top right. Then click on “Forgot password?”. Enter your e-mail address that is connected with the profile, in the input field and click "Reset Password". An email with an activation link will be sent to your email address. This link will forward you to the website, where you can re-enter a new password.
Why is the role of a participant important?
For later analysis and evaluation of data, it is important to know from which perspective or role a contribution has been submitted.
Is it possible to participate anonymously without a registered profile?
Unfortunately, it is not possible to post a contribution without having previously registered on the platform. All contributions will be treated as strictly confidential and at no time are any submitted contributions accessible to other participants. All contributions are, of course, subject to data protection. Participants are able to delete their entire profile after having submitted a contribution; in this case, the contribution will remain in the system but the underlying profile data will be deleted.
Can a profile be deleted?
Yes, a profile can be deleted. If the profile is deleted, any submitted contribution will remain in the system, but the participant’s data will be destroyed. If you want to delete your profile, please contact: firstname.lastname@example.org
When can I start submitting contributions?
Opening date for submissions at www.redensiemit.org : 16 April 2015
Until when can I submit contributions?
Closing date of www.redensiemit.org : 16 June 2015
How can I contribute?
In order to submit a contribution, participants must have previously registered, created a profile and be logged into the platform. You can click on the tab “Contribute” and formulate a title for your contribution. There is an extra field specifically for the title (max. length 45 letters). Please type your contribution into the text field “Description” (no limitation of letters). If you also want to add a PDF file or a photo, please upload it via the provided field. When you have finished your contribution and are ready to submit, please press the button “submit contribution”.
In case you wish to continue working on your contribution again later, please save it as a draft.
At no point in time are submitted contributions accessible by other participants. All contributions are subject to data protection and are treated in the strictest confidence.
Can a contribution that has already been submitted, be re-edited?
No, a contribution that has already been submitted cannot be re-edited. But it is possible to save a contribution as a draft and to send the contribution when it is actually finished.
If a contribution is saved as a draft, the participant can continue editing at any time.
Can a contribution be deleted?
Yes, a contribution that has been submitted can be deleted. If you want to delete your contribution, please contact: email@example.com
Can I submit more than one contribution?
Yes, you can submit as many entries as you want.
Can I view my submitted contributions in my individual profile?
Yes. All submitted contributions are stored in your profile under "My contributions".
Can other participants see what I have posted?
At no point in time are submitted contributions accessible by other participants. Therefore, no participant is able to read or comment on contributions submitted by others. All contributions will be treated as strictly confidential and are subject to data protection.
Why can other participants not see my submitted contributions?
Mental illness is a sensitive issue and continues to be fraught with prejudices and taboos. For this reason, the project team has decided to ensure anonymity and make all contributions private and inaccessible to other participants.
Is such a large amount of data manageable? And how can the quality of the final evaluation be ensured?
A great number of submissions are expected, which will be systematically analysed in a computer-aided, comprehensive, analytical process by a trained team of analysts, which will be supported by experts on mental disorders.
How will the defined research areas be evaluated and ranked?
Evaluation and ranking will happen in a two-step process. First, the categorized and clustered research areas will be made available on the platform for all registered participants to vote on. Subsequently, an international jury of experts will compile a final ranking.
What happens during participant voting?
The results from the analysis by experts are categorized and clustered into research areas. Subsequently these research areas will be posted on the platform. All registered participants will be invited via e-mail to vote for the most important research area for them. The question will be: Which area of research should be a priority in your opinion?
Who are the members of the expert jury?
Both patient-side experts as well as experts from the area of research will be part of the expert jury. As soon as the composition of the jury is clarified, the names of the jury members will be published here .
What is the role the jury?
After participant voting is complete, a jury of international experts will receive all results and findings. At the end of October, the jury will meet and decide which research topics should be first researched by the Ludwig Boltzmann Society. The outcome of this process will provide the project with its final result.
Do I as a participant receive access to the final results?
Yes, for registered participants the results from the participant voting and jury voting processes, as well as the final results, will be provided on the platform.
What is the Live-Chat for?
During the live chat, registered participants can exchange information, thoughts and problems on a particular topic. An expert will lead the live chat and answer questions about the topic.
Can everyone participate in the live chat?
No, only registered participants can participate in a live chat. The number of participants during a live chat is limited to 20 active discussants. More registered participants will be able to follow and read the chat, but not actively discuss the topic in the live chat.
Can everyone read the discussions from the live chat afterwards?
Yes, the discussions during a live chats are stored on the platform and all registered participants can read the contents afterwards.
How are the ideas protected?
Within the framework of Tell us! no ideas are generated. Participants provide contributions on unsolved problems, open issues and personal experiences, which, as such, are not subject to any protection. The submitted contributions are exclusively accessible by the team of analysts and are not accessible to other participants at any point in time. All contributions will be treated as strictly confidential and are, of course, subject to data protection.
Who is the contact person for further open questions?
If you have any questions that are not answered in our FAQs, please write to firstname.lastname@example.org . We will be happy to respond.