COVID-19 Case Report Frequently Asked Questions

What is the purpose of this project?

The goals of the PCQC Covid-19 Case Report Project are to rapidly define the impact of COVID-19 on patients utilizing palliative care and how COVID-19 impacts our patients, our providers, and our field.

Why should I report a case?

The data collected will be used to disseminate information, identify lessons learned, and improve the field. We understand asking you to do more at this time is a big ask. The case report provides an opportunity to share your experiences so they can help the next person.

How is the data from this registry going to be shared/disbursed?

The data is shared 1) directly on palliativequality.org, 2) through listservs and social media, and 3) via scholarly publications. We plan to update the website frequently.

What steps have been taken to ensure the security of the data?

We have created a registry that contains only de-identified data, per HIPAA Safe Harbor De-Identification standards. Our data platform partner (ArborMetrix) provides for secure web-based data entry with the data stored on secure servers. All data is encrypted during transmission. The web and database servers are monitored by the IT staff, patched frequently, and scanned by a third-party vendor to ensure that they are protected against known vulnerabilities. 

When should I fill out a Case Report Form?

The case report includes data on the final status of the patient, and therefore should be submitted after the consult is completed.

Once a survey has been submitted, can it be re-accessed or edited at a later time? What if I have updated information about a case after submission?

Once a survey has been submitted, it can not be re-accessed or edited at a later time as the survey is de-identified.

Who should fill out the Case Report Form?

Palliative Care providers who are taking care of patients with or suspected of COVID-19 should complete the case report. Or administrative support with access to the patient file can complete the report.

Can patients fill out the Case Report Form?

No, the Case Report Form is designed to be filled out by a health care provider. Patients should encourage their health care provider to complete a Case Report Form on their behalf.

I am a patient. How can I help?

Thank you for your interest in helping with this international effort! Please consider asking your health care provider to report on our website (palliativequality.org). We encourage you to check our website frequently, as we will be posting data and updates at least weekly. We wish you a speedy recovery.

How long will it take to complete the case report?

The survey takes approximately three minutes to complete.

Can health care providers anywhere in the world report a case to this registry?

Yes. PCQC – COVID-19 is an international effort, and we encourage health care providers around the world to report to this registry.

Will this project lead to care recommendations or guideline development?

Yes, we hope that this will produce sufficient data to inform the care of palliative care patients.

Is there a collaborative goal with the users of the database?

With users reporting cases in real-time, we hope to rapidly determine the impact of COVID-19 on palliative care patients.  The data will be made available on our project website and frequently updated.

Who is organizing this project?

The Palliative Care Quality Collaborative (PCQC) leads this effort to meet the immediate needs of the broader community in these challenging times. PCQC’s motto – Improving Quality, Together – is never more real than at this moment.

Are there any partnering organizations/societies?

PCQC is working with a variety of organizations and societies to raise awareness of the PCQC – COVID19 registry, and disseminate the learnings.

If I have additional questions, who should I contact?

Please direct questions to our online form.

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