Who can access my research study data?

Patient responses may only be viewed by users in the site conducting the survey.

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Can I run a study without a subscription to Patient Messages or Patient Tablets?

Yes, you are welcome to run a stand-alone study without subscribing to any other Ocean Platform services (ie. Patient Tablets and/or Patient Messages). In this scenario, participants can access the study using a public URL. All submissions via the public URL will be anonymous and will not generate a participant key (required for longitudinal research).

If you plan to track study participants over time, a participant key is required. In this case, a subscription to Patients Tablets or Patients Messages is required. 

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I changed one of my study forms and now I am getting emails telling me to export my data. Why is this happening and how do I make this message go away?

If you have made changes to your study form, you will receive an email notification with the following message:

You are receiving this email because there are Ocean Study EForm(s) that have been edited and have yet to be exported. Please export the following studies to verify that the data has been properly processed.

This message is a prompt for you to export your study data after you have made changes to its study form, to check to make sure that the data is being collected as you anticipated.

To prevent this message from appearing again, export your data from the applicable study.

  • Log in to the Ocean Portal and navigate to the Studies view.
  • Locate your study and select "Export". Exporting won't affect the data at all - it will still be there to export later. You can export your study data at any time, as many times as you wish.

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Can I change the column headings on my exported Ocean Study data?
  • Open your eForm in the Ocean eForm Editor.
  • For each question, enter the "Scripting and More" tab.
  • There, you can type in your preferred column header in the "Study export column header" field, which will override the item reference value in the study export.
  • You can preview your study export columns in the panel below.

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How do I follow a participant across studies?

You can follow a patient across studies by linking their participant key using the steps listed below (for more about participant keys, please refer to "Participant Keys - Tracking & Anonymizing Study Participants").

  • Log in to the Ocean Portal and navigate to the Studies view.
  • Locate your first study and click "Configure".
  • Ensure that the first study is set to "Generate a participant key for this study" and select "Save".
  • Locate your second study and click "Configure". This time, click "Align this study's participant keys with" and select the first study from the dropdown menu.
  • Save your changes.
  • Repeat steps D and E for each study that you wish to link.

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Can I export data from aligned studies in one spreadsheet?

Yes, it is definitely possible to export the full data set from multiple studies that have aligned participant keys.

  • Log in to the Ocean Portal and navigate to the Studies view.
  • On one of your aligned studies, click "Export Results".
  • Select a date range for the data you want to export and then check off the "Export related study data" checkbox.
  • Select which aligned studies you want to export together and click "Save".
  • Your data will then be downloaded as a .csv file that can be opened in Microsoft Excel. In aligned study data exports, each row represents one item (i.e. question) that was completed on each form.

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What if I need to identify a patient from my study data?

Ocean studies are designed to anonymize patient data. However, we recognize that there may be circumstances under which you would like to be able to link study data back to patients. You can do this by either using the study configuration method or the @ptExternalRef keyword and formula item method, both of which will record patient identifiers from the source EMR.

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  • The external patient reference number will be the PSS ID (at the top right corner of the patient chart).
  • Study Configuration Method

    • Once you have created your study (see "Create Your Ocean Study" for study creation details), select "Configure" on the applicable study under the Studies view in the Ocean Portal.
    • Under the Pseudonymisation section, select the checkbox entitled "Capture EMR ID with submissions". Next, select save to retain your settings. Next time you export your study data, you will see the EMR ID as one of the study columns.
  • Keyword Method

    • To begin, locate the study form under the eForms tab and select "Edit" to view it in the eForm editor.
    • Add a new item, set the item type as a "Formula". Give the item a name, such as patient identifier.
    • Under the Scripting and More tab, set the item reference to something like "Pt_Identifier", set "Show this field if" to false, and enter the following script into the Formula box: ScriptUtil.getKeyword('@ptExternalRef').

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How do I notify patients that my study has ended when they try to submit a response?

If your study has ended, you will want to prevent patients from submitting any more survey responses. You can do this by either deleting your study (after exporting all your results) or by editing your study eForm to notify patients that the study has ended.

Delete Your Study

You can learn how to delete your study in "Deleting Studies Upon Completion".

The downside of this method is that if a patient attempts to fill out the study form, they will receive an error message telling them that the study is unavailable, which may mislead patients into thinking the system is not working. To mitigate this confusion, you can instead try editing your study eForm, as described below.

Edit Your eForm

Once your study has ended, you can edit your study eForm to notify your patients that the study has ended by adding a label item with your notification and hiding the rest of your survey questions.

  • Open your study eForm in the eForm Editor.
  • Add a new item and change the item type to "Label".
  • Type out your notification message that you'd like your patient to see (e.g. "Thanks for your participation. The study has now ended.").

This is an example of a form that has been edited to show the "study has ended" notification at the beginning and hiding the rest of the patient experience survey questions: Study Has Ended Notification Form.

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