Screening and Questionnaire Research
Collaborative Development of Copyleft Screening, Assessment & Patient Reported Outcome Measures for Private Mental Health Practice
Research Focus and Rationale
Mentor Research Institute (MRI), the Independent Mental Health Practices Alliance (IMHPA) and Private Practice Cloud, (PPC) collaborate to advance a model for private mental health practice which supports ethical clinical practice, clinical assessment innovations, measurable outcomes and improvements in quality assurance.
One problem facing the mental health professions is the scarcity of screening, progress, outcome, alliance and patient satisfaction measures that patients and providers believe have clinical value. Availability of a wide variety of instruments that can be administered, scored, discussed with patients, aggregated, analyzed and reported graphically is highly desirable. Measures that can inform clinicians about patterns of concern and of change are essential for individuals, families, human systems, and population subgroups. Appropriate measures inform care, protect privacy and demonstrate the value and importance of necessary interventions.
Technology allowing mental health professionals to develop and modify their own questionnaires has been created by PPC and can be implemented inexpensively for private clinical practice. This system is built to create and deliver questionnaires in a manner that can be easily modified to assess the enormous variety of clinical issues and their presentation in private practice. The use of this technology as a service available to those whose mental health practices require that the technology be free, open source and copyleft.
Creation of reliable and valid paper and pencil or machine delivered questionnaires that can be administered for group comparison and to inform diagnoses has been a great accomplishment of academic psychologists. A significant impediment to improvements for clinical practice involves the manner in which copyright holders limit use of many psychological instruments to clinicians and organizations that can afford the licensing fees for such use.
Clinicians who use copyrighted instruments are not allowed to modify those questionnaires or to develop alternative norms for scoring. An individual or organization committed to the use of a given free copyrighted questionnaire may have the free use terminated at any time by the copyright holder. [Example: the Mini Mental State Examination (MMSE), particulars and current price linked here.]
Basic Copyright
Copyrights, have important purposes. Foremost, copyrights protect the creative work and investment of their authors. Without that protection, creative efforts and investment would be discouraged and that would be to the detriment of society.
Copyrights are both simple and complex. For example, an original written work is considered copyrighted once created. No paperwork or copyright application is required. Further, no one can copyright an idea. So people are free to create and use their own original work if that work flows from an original idea. There are purposes for which copyrighted material can be used without infringing on copyright owners’ rights. Purposes such as research, personal use and education are deemed as fair use of copyright materials. There are infringements and fair uses of copyrighted material. Courts of law become involved to rule on questions regarding protection of free speech versus the form of intellectual property known as copyright. An obvious infringement would involve a creating a copy of another person’s creative written work and using that copyrighted material for profit without due compensation to the owner of that property.
One cannot copyright an idea. One cannot copyright a commonly used sentence or phrase. One cannot copyright language for one purpose and assert that copyright for all purposes across all cultures. One also cannot copyright language and enforce that copyright in ways that are to the detriment of society. For example, one cannot prevent research pertaining to the reliability, validity and utility of the question “Do you feel sad?” Otherwise, clinicians creating their own questionnaires would not have discovered that that the PHQ9 and the GAD7 do not differentiate patients with a diagnosis of depression from those with anxiety. Patients who are depressed can also be anxious. Patient who are anxious can be depressed. Psychotherapists treat what they see and what the patient reports and the diagnosis may often be wrong. The answers to a GAD7 and PHQ 9 are not educative and can be misleading regarding the emotion-states of patients completing those questionnaires. Clinical studies of those instruments have demonstrated that these two familiar instruments don’t reliably differentiate anxiety and depression. For example, the question “Do you feel sad?” and the question “Do other people ask you if you are down?” can differentiate diagnoses of anxiety and depression and their severity. Those are commonly used sentences; to claim ownership or to restrict the use of a question like “Do you feel sad” or prevent the addition of another question such as “Do other people comment that you seem nervous or ask you if are nervous?” would be of detriment to society and the scientific advancement of mental health services.
Some screening questionnaires, like the PHQ-2, which consists of two questions, are designed to alert physicians about the possibility of depression. The developers of the PHQ-2 assert that they have copyright of those two questions. Their assertion has not been tested but enforcement would almost certainly be attempted through a civil suit.
An opinion among people supporting copyleft efforts, is that using only copyrighted questionnaires may limit the capacity of mental health professionals to develop and adopt patient report measures that are respectful, useful and meaningful to patients and therapists. Offering mental health professionals the ability to create questionnaires that serve specific purposes in the context of the patients being treated can support situationally and culturally appropriate feedback valuable to patients and therapists; that is to the betterment of practitioner research, public health and society.
Basic Copyleft
Copyleft is the practice of granting others the right to freely distribute and modify intellectual property. Those granted a copyleft may continue to use that property if they preserve it in derivative works created from that property. While copyright law gives software authors control over copying, distribution and modification of their works, the goal of copyleft is to give all users/viewers of the work the freedom to carry out all of these activities with specific restrictions. The basic fair-use principle of copyleft is that any person can benefit freely from the previous work of others, but that any modifications to the previous work should benefit everyone else as well, and thus must be made available under similar terms.
The freedoms of copyleft innovation are:
Freedom 1 - freedom to use the work.
Freedom 2 - freedom to study the work.
Freedom 3 - freedom to copy and share the work with others
Freedom 4 - freedom to modify the work,
Freedom 5 - freedom to distribute modified and therefore derivative works.
Instead of allowing a work to fall completely into the public domain, where no ownership of copyright is claimed, copyleft allows authors to impose restrictions on the use of their work.
Non-Profit-Business Model for Copyleft (Fair-Use) Research
The greatest assurance that questions and questionnaires are copyleft, for the user’s purpose, are
to agree that the questions and questionnaires developed will not be sold,.
to agree that the questions and questionnaires developed may be used freely by others in perpetuity with the same conditions.
to acknowledge that the idea and purpose of questions and questionnaires cannot be copyrighted.
to acknowledge that one cannot copyleft or copyright a commonly used preface, question element or response option.
to agree that copyleft questions and questionnaires are created by using a definitive library of questions that are open source and serve as database to serve knowledge advancement and benefit society.
to acknowledge that that questions have three parts. A preface, a question element and response options.
Considerations that Manage Risks of Infringement on Copyright:
Factors that challenge copyright claims concerning evaluative mental health questionnaires are “significant differences” such as
different purpose, (e.g. research, personal, education).
based on a different idea,
fewer or more questions,
different order of questions,
questions that change questionnaires’ purposes
questions based on a different evaluative idea,
different wordings
different meanings,
different pre-questions,
different response options,
different instructions,
questionnaire is similar to other copyleft questions in questionnaires that do not infringe on copyright. (i.e. derived from copyleft questionnaires.)
Assurances that Support Copyrights
From a legal perspective, risk management flows from these considerations:
Mentor Research Institute (MRI) does not and will not sell questions or questionnaires.
Users of PPC’s software can create and may share question prefaces, question elements and question response options.
Users of PPC’s software can use any published questionnaire of this research project without charge.
Users of PPC’s software) cannot change published questionnaires and use the exact same name.
To change anything in a questionnaire requires users of PPC’s software to create a new questionnaire.
Questions entered into the system in any questionnaire are copyleft and transferred to MRI when added to the copyleft library.
Research, education and personal use come under the term “fair use”. Fair use affords certain uses. Questions selected into the MRI library are logged as being for personal, business, education, research, personal-research, practice-research, business-research, education-research, other, etc.
MRI provides basic statistical and analytic tools since research has several fair use protections.
MRI will make a version the PPC-developed questionnaire builder (QBuilder) available to educational institutions for education, training and research purposes.
MRI will provide references to copyright laws.
MRI will have a strong “terms of use agreement” to which users must subscribe before they build questionnaires.
MRI will implement a DMCA policy and a take-down process similar to https://www.rstudio.com/about/dmca-policy.
Creating Degrees of Separation Among Sources of Questionnaires
Access to the QBuilder is permission based. A fully authorized user may submit new question prefaces, question elements and response options to the library using the QBuilder Portal. The QBuilder has an interface with a Database (i.e. library) that is overseen by Mentor Research Institute. Access to the QBuilder is limited to organizations and users approved by Mentor Research Institute. All approved users may submit question prefaces, question elements and question response options to the library via the QBuilder Portal. Users may use the library to create questionnaires. Depending on the complexity of the questionnaire being created, MRI may in some situations provide assistance to users.
In this model, there is a degree of separation between submitting the elements necessary to create questions, creating questionnaires and posting questionnaires. Users can create the elements for building questions. Users can also use those questions to create tests. User can also use tests to create questionnaires. User’s cannot create an exact copy of a questionnaire. They can reorder questions, modify, remove and add questions to create new tests. Any number of tests can be combined to create a new questionnaire. All these activities are permitted if the user implements their questionnaire using the QBuilder Software and QBuilder library. Users must also agree that their work is under the Mentor Research Institute Copyleft and Free Use License Agreement described below. As such, all questionnaires and dis-identified data are for the purpose of research and the betterment of society.
MRI will develop and refine guidelines and policy for posting questionnaires for use by approved users. As the number of users grow, users will be allowed to post their own questionnaire for clinical use.
All questions submitted to the QBuilder are automatically copyleft. Users build questionnaires from the library whether they submit questions or not. Users may search for and questions, pre-questions and response options from the library.
A questionnaire can be:
A group of tests.
A test.
A test can be:
A group of questions.
A question.
Every finalized test is “owned” by the user who may be a person (or an entity, i.e. a group.)
No person can own another person’s work.
Any person may use another person’s test or questionnaire.
Only Admin may edit a finalized and posted questionnaire.
Any questionnaire that is copyrighted cannot be used in this system unless approved by the Admin. That questionnaire should:
at a minimum be publicly available by the copyright holder,
be included in the library in whole only for purpose of research such as investigating the reliability, validity and usefulness of that questionnaire and the questions therein,
be included for comparative analysis with other questions and alternative questions,
be created in the library with pre-questions, question elements and question response options,
have questions that can be scored with a SUM, AVERAGE or weighted scoring. (The scoring data is copyleft by a person.)
For example, here are 5 standard types of prefaces for classification:
How often did you
How often were you
How many times have you
Do you
Have you ever been
A question is categorized by a “Search Tag” such as:
Attention
Eating/Food Consumption
Emotion
Emotional regulation
Emotional stability
Employment
Trauma
Exercise
Financial
Housing
Impulse control
Legal
Mood
Pain
Physical symptoms
Alcohol use
Safety
Sleep
Social
Stressors
Thoughts
Tobacco
Well-being
Examples of responses options are categorized by a general descriptor such as:
Yes, No
Yes, No, Don't know
Not at all, A little, A lot
Rarely, Sometimes, Often, Very Often Never,
Rarely, Sometimes, Often, Always
Rarely, Sometimes, More than half, Almost always
Almost never, Sometimes, Often, Very often, Almost all the time
Rarely, Several times, Less than half, More than half, Almost always
Never, Almost never, Sometimes, Often, Very often, Almost always, Always
Not at all, Rarely, Sometimes, Very much, Almost always
Never, Almost never, Less than sometimes, Sometimes, More than sometimes, Almost always, Always
Strongly disagree, Disagree, Agree, Strongly agree
Strongly disagree, Mostly disagree, Mostly agree, Strongly agree
Disagree, Mostly disagree, Mostly agree, Agree
Not at all, Rarely, Sometimes, Often, Very often,
Never, Sometimes, Often, Very often
Not like me, Somewhat, Like me, A lot like me, Very much
Using DMCA “Take Down” Policy
The value of the open source community library and a DMCA (Digital Millennium Copyright Act) policy is that people claiming copyright infringement must first request a take down and provide argument and evidence before they can take action to litigate. This part of the policy will give MRI the final call. Member-users may freely enter the library and use questions for the purpose of creating tests. Users are required to access the library and/or contribute to the library using the QBuilder software at www.OregonTherapyOptions.com for the purpose of creating, administering and studying their questions, tests, and questionnaires. Permission to use the QBuilder requires membership on the website and approval by Mentor Research Institute.
A request to take down a questionnaire must be sent by postal service to:
Mentor Research Institute. 818 NW 17th, #11, Portland Oregon 97219
Copyleft and Free Use License for the Questionnaire Builder (QBuilder) Library
Mentor Research Institute Copyleft and Free Use License Agreement
By developing and modifying their own questionnaires mental health professionals can supplement their marketing with questions that will validate feelings and concerns and give patients encouragement to reach out and begin a conversation.