READ ME: About the ProQOL Data Bank

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The ProQOL Thrives and lives based on generous donations of data from people just like you, Here is information for you to learn how the donated data are used.

Please read this information and acknowledge it during your data submission.

Is the data bank public?
No. The data bank is not publicly available.

Can you identify any person whose data is in the data bank?
No. We never keep any individually identifying information.

Will you publish the data from my data set alone?
No. We never publish any one data set. Data are merged with other data so that no one dataset can be identified.
For example, we have collected data from multiple studies of nurses. The data are merged as nursing data, not specific project data. When we have sufficient data to subdivide a group, we may do that. However, no single dataset is used. No groups of less than 25 cases are used.

What happens if I donate data that has been collected in a geographical of profession area that is small and can be identified by its uniqueness?
We understand and respect the need to protect the identity of small or unique types of groups.

Some of our data come from rural areas or specialized types of professions. We understand that people in a particular geographical or professional area know that data are being collected from them and thus might be able to “see” themselves or their community and work out the details of the data collection. We are very careful to merge these types of groups with other data in such a way that they are not identifiable. There are several types of protections we provide. First, we monitor the size of the research subset we analyze. When there are rural or very specialized groups we typically merge them into cells larger than 25. Second, in the case of very specialized professions we merge them with similar but not as specific types of professions.

If I donate my data will you publish anything using my data that might keep me from publishing my results?
No. You data will be merged into the larger data bank. We will never use your data individually. We will never use your data in a way that might interfere with publications based on your study.

How do you merge the data so you know what types of people it comes from?
We code types of data sets to allow us to merge like-with-like on data sets.
For example, if you are collecting data from social workers in Alaska, your data could be coded in the data base as Alaska social workers. There is no individually identifying information in the data bank. There is no way to identify the person donating data or the individuals who completed the measure.

It seems pretty complicated to merge data from multiple studies. What data do you need from my project?
We are always happy to have any data that can be provided to us. We hope that you will have variables to go with the ProQOL that can better help us understand measuring compassion satisfaction and compassion fatigue. Other variable should include, if at all possible, gender, type of workers, country and if a specific trauma event that would have a particularly recognizable impact. Other important variables include years in field, anticipated years to retirement or leaving the field, training educational level, work setting, work tempo, and others. It is our practice to take as many variables as people are willing to provide since we can often merge types of variables into one.

If I donate data, do you keep my contact information?
Yes. We keep contact information about the person who donated the data. These files are treated in a confidential manner and only ProQOL staff have access. The contact information is no maintained in the data bank itself. The contact information for the person donating data is retained in a separate file and linked only by a code. We retain name, email and when appropriate, address of those who donate data.

Can I still donate my raw data if I have to make specific requests about how you use the data?
Yes. If you want to donate data and do not wish for us to keep your information, we can work with you to allow a data donation without your contact information.

If you have particular requests in regard to the use of your data donation, we will work with you to respect your needs.
Sometimes a person is able to donate a copy of their raw data but have specific needs in regard to the raw data. We are happy to work with you to figure out how to meet the criteria that you have.

Can I donate my data if I only submit part of my data set?
Yes. We are happy to have any data you can share with us.

My data set is really small. Do you still want me to donate it?
Yes. Many small data sets can become a very large one through many peoples contributions.

What do you want to know about the ethics of how I collected my data?
We ask that you give your assurance that your data were collected in an ethical and non-coercive way and that the data will not be used in a way that is punitive to the individuals who have responded to the ProQOL. This may be an organizational, regimental, research human subjects committee or a collected under methods and practices consistent with the esthetically practices of you professional colleagues or associations.

Recommended coding for key variables

• ProQOL variables: pq1 through pq20
• Sex maes=0, females = 1
• Contact us regarding other variable coding.
• You will need to tell us if your data are using the reverse score or if the reverse score was compute at a later date.