MyCovidDiary
MyCovidDiary is a clinical research project that uses technology to learn and document COVID-19 onset and disease progression. Sponsored by Providence, (of which Swedish Health Services is a part), this clinical research project uses technology to collect and analyze first-person accounts of COVID-19 from thousands of individuals—with the hope of accelerating the medical identification, understanding and treatment of this novel disease.
MyCovidDiary
MyCovidDiary is a clinical research project that uses technology to learn and document COVID-19 onset and disease progression. Sponsored by Providence, (of which Swedish Health Services is a part), this clinical research project uses technology to collect and analyze first-person accounts of COVID-19 from thousands of individuals—with the hope of accelerating the medical identification, understanding and treatment of this novel disease.
The MyCovidDiary project started in August of 2020. To date:
More than 10,000 people are actively participating in the study
Participants have logged over 70,000 journal entries in MyCovidDiary
Frequently Asked Questions (FAQ)
What is MyCovidDiary?
A team of researchers at Providence is working to learn what the symptoms of Covid-19 are and how long they last. Normally, it takes many years to accumulate this knowledge about a new disease. We’re accelerating our learning by using crowdsourcing and Natural Language Processing (NLP). The project relies on volunteers with COVID-19 to journal, in their own words, what they are experiencing. This collection of first-person accounts of COVID-19 from thousands of individuals will be an extremely valuable resource for understanding this disease. We will analyze the journal entries of participants to create a COVID Symptom Timeline for the disease.
Why is this research being done? Don’t we already know enough about Covid-19?
Actually, no. Despite its broad public awareness, COVID-19 is a brand-new disease and there is still a lot that clinicians still don’t know about it. Because of this, clinicians may miss the diagnosis by failing to recognize symptoms, and it’s difficult to counsel patients about what to expect over time.
What will I need to do, and for how long?
All that’s required is that you periodically answer very short questionnaires and journal what you’re experiencing, in your own words. Your journal entries can be as long or as short as you like. If you agree to participate, the MyCovidDiary team will reach out to you via text and ask you to take very short surveys (less than two minutes) and then will prompt you to journal, in an open-ended way, about what you’re experiencing. You’ll be contacted about every other day for the first two weeks, once a week for the following three months, then then once a month thereafter—for a total of one year.
Will my doctor see my responses?
No. This is a research study and it is not connected to your medical record. Your entries will not be regularly monitored. If you need attention, contact your provider in the usual way.
Will being in this study help me in any way?
Not directly. Volunteers will not be paid, and participation will not affect your treatment in any way. However, participation is an opportunity for ‘citizen science’ – enabling you to help patients in the future and turn a bad experience into a positive contribution to the world. If you participate in the study, you’ll also have an opportunity to contribute to the scientific process in other ways: we will periodically share early findings with you before they’re published, and you’ll be invited to comment on these findings and suggest additional analyses that we should run.
What happens if I agree to participate, but I change my mind later?
You can drop out at any time, by emailing MyCovidDiary@providence.org or by replying STOP to a text message from the MyCovidDiary team. If you request it, we will also eliminate any data you have previously submitted from the study.
Who can participate?
Any adult testing positive for COVID-19 at one of our labs in our health system. We’re reaching out to everyone aged 18 and above who tests positive within our system with an invitation to participate.
Is there any way being in this study could be bad for me?
Whenever your information enters an electronic system, there is a risk of that data being stolen or misused. This risk is small. This study uses the secure, encrypted, Providence Health Cloud Data Warehouse for storing any information you provide. This affords it the same high level of security as other medical data.
What do you do with the information you collect?
We use Natural Language Processing technology to automatically ‘read’ the journal entries and identify symptoms and life experiences that are common across participants. We will use this information to map out a COVID-19 symptom timeline, that shows clinicians what people with this disease experience at each point in time after the disease starts, for a year. We will also look for patterns. For example, we’re hoping to learn which combination of symptoms predicts a long or short duration of illness.
Will my data be secure?
Yes. Your data will be handled following the same standards as data in your electronic medical record, and stored within the health system’s encrypted firewalls. After the study is complete, your identity will be completely removed from the study database.
How do I sign up?
If you’re eligible, you’ll be contacted by the MyCovidDiary team via text message. You’ll then be able to sign up via your phone.
Still have questions?
Team
Ari Robicsek, MD | Principal Investigator
Dr. Robicsek is Chief Medical Analytics Officer at Providence, a 51-hospital, 9,000 physician health care system on the West Coast of the United States. He heads a team of data scientists who are responsible for turning medical data into information that leads to improvements in practice. He is also an Infectious Disease specialist and researcher.
Dr. Robicsek received his medical degree from the University of Toronto Medical School, where he also served his internship and residency. He completed his fellowship in infectious diseases at Harvard Medical School.
Bradley Roberts | Co-Investigator
Brad Roberts is a Senior Clinical Data Engineer at Providence. He has spent much of his career developing data-driven solutions in collaboration with others who have a shared interest in improving all aspects of health care and patient treatment. Embracing data as an opportunity to learn and share information, he has supported important efforts in chronic pain research, measure development and patient-reported outcomes assessment, and the integration of machine learning and artificial intelligence for clinical decision support tools.
Brad has graduate degrees in biostatistics and exercise science. He is currently finishing his PhD with a specialization in natural language processing and machine learning at Western Michigan University.
Bill Wright, PhD| Co-Investigator
Dr. Wright is the Executive Director for Health Services Research at Providence, where he oversees CORE – the Center for Outcomes Research & Education –and supports a range of health services and health care transformation research across the Providence system. A sociologist by training, Dr. Wright has decades of experience in health care research and has led numerous studies assessing transformational approaches to care delivery, payment, and integrated population health strategies. Dr. Wright has published extensively – he was a principal investigator on the Oregon Health Insurance Experiment (OHIE), the first-ever randomized trial on the effects of having health insurance vs. not having it, and several other policy-focused randomized trials. He has also published work examining cost sharing structures and other reforms in the Medicaid system, the impacts of housing and other social determinants of health on quality, cost, and health outcomes, behavioral health integration and stigma in health care reform, and the impact of accountable care structures on patient and population outcomes.
MyCovidDiary: Helping researchers better understand Covid-19 through the use of technology.
MyCovidDiary: Helping researchers better understand Covid-19 through the use of technology.
About Providence
Providence is a national, not-for-profit Catholic health system comprising a diverse family of organizations and driven by a belief that health is a human right. With 51 hospitals, 1,085 physician clinics, senior services, supportive housing and many other health and educational services, the health system and its partners employ more than 120,000 caregivers serving communities across seven states –Alaska, California, Montana, New Mexico, Oregon, Texas, and Washington, with system offices in Renton, Wash., and Irvine, Calif. More information can be found at www.providence.org.
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