TELL US!

WHAT QUESTIONS ABOUT MENTAL HEALTH DOES RESEARCH NEED TO ANSWER?




FAQ

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: openinnovationinscience.



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 – Contact.



Those who participated in the initiative Tell us?


As of 16 April 2015, everyone was able to participate in the initiative Tell us! - no matter whether someone was affected themselves, a family member was affected, you were a physician treating such illnesses, or were a therapist, and no matter where you live in the world; participation was 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.



Was it possible to participate in Tell us! even without internet access?


Unfortunately not. Internet access and a profile registration were a requirement for participating in the initiative Tell us!. Use of regular mail is excluded.



What kind of contributions was the Ludwig Boltzmann Society looking for?


In general, the Ludwig Boltzmann Society was 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 did not read the submitted contributions before the closing date (6th of July 2015).



What is the timeline of Tell us?


The essential steps:

  1. Opening date for submissions at redensiemit: 16th of April 2015
  2. Closing date of redensiemit: 6th of July 2015
  3. Analysis of all contributions submitted: August to September 2015
  4. Participant voting: 29th of September to 18th of October 2015 (2 weeks)
  5. Jury voting: 22nd of October 2015 (1 day)
  6. Presentation of the results: end of 2015


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 were 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 did NOT serve to provide ANY answers regarding medical questions, nor did it provide ANY diagnoses or ANY therapeutic recommendations. Medical help and advice in association with mental illnesses are offered by trained professionals contact.




Is such a large amount of data manageable? And how can the quality of the final evaluation be ensured?


Almost 400 entries have been submitted, which were systematically analysed in a computer-aided, comprehensive, analytical process by a trained team of analysts, which were supported by experts on mental disorders.



How were the defined research areas evaluated and ranked?


Evaluation and ranking happened in a two-step process. First, the categorized and clustered research areas were made available on the platform for all registered participants to vote on. Subsequently, an international jury of experts compiled a final ranking.



What happened during participant voting?


The results from the analysis by experts were categorized and clustered into research areas. Subsequently these research areas were posted on the platform. All registered participants were invited via e-mail to vote for the most important research area for them.



Who were the members of the expert jury?


Both patient-side experts as well as experts from the area of research were part of the expert jury. Please click here for more information about the jury.



What is the role the jury?


After participant voting is complete, a jury of international experts will received all results and findings. At 22nd of October, the jury met and decided which research topics should be first researched by the Ludwig Boltzmann Society.



When do I as a participant receive access to the final results?


The results from the participant voting and jury voting processes, as well as the final results, will be provided on the platform in the end of 2015.



How are the ideas protected?


Within the framework of Tell us! no ideas were generated. Participants provided contributions on unsolved problems, open issues and personal experiences, which, as such, were not subject to any protection. The submitted contributions were exclusively accessible by the team of analysts and were not accessible to other participants at any point in time. All contributions have been treated as strictly confidential and are, of course, subject to data protection. Conditions for participation.



Who is the contact person for further open questions?


If you have any questions that are not answered in our FAQs, please write to contact@redensiemit.org. We will be happy to respond.