All The Info: Patient-Generated Health Data
I was recently tidying up my home office and I came across 10 years of notebooks with a collection of random data, peak flows, oral corticosteroid doses, and a heap of symptoms. This had me thinking about the data that we generate as patients.
What is patient-generated health data?
To recap, patient-generated health data (PGHD) is "data created, recorded or gathered by patients, family members, or caregivers to help address a medical concern."1 The data that we collect as patients also include lifestyle choices and personal health record data.
What patient data do you create? I have created logs of peak flows, symptom tracking, rescue medication use, and even general well being.
Why gather patient-generated health data?
We are often asked a number of questions when we are at appointments. Do you ever wish you had more information at your appointment with you? This was one of the reasons why I started tracking my own data.
As you may have experienced, I have been to a number of appointments where I have left feeling like I had more information to present but I did not have it written down or consolidated in a concise fashion. These appointments tend to land on days that I was feeling well and asymptomatic which makes it more difficult to demonstrate symptom or treatment trends.
I now attend appointments with at least some level of self-generated data. This has aided me in being an active participant in shared decision making with my care team. My data has become an important piece in monitoring my care and also determining points in which important decisions about continuing with specific care has been warranted.
Challenges to consider with PGHD
There can be some challenges to collecting our own data. Like most things in life, collecting our own data can have a shelf life. For example, if we are monitoring acute conditions, we may discontinue collecting information.2 I know that I was very compliant with recording peak flows and symptoms, however, once I achieved a state of good control, I backed off recording my own data until periods of worsening symptoms.
I have often wondered about extending the periods in which I record data. I think this would be easier and I would be more compliant of this was done with me having to do little or nothing. I know that technology is quickly becoming the point where we will actively have to do less to have information about ourselves. Perhaps, in these technology developments are a better way to monitor periods of remission.
Have you generated health data for yourself?
How has using your PGHD helped you make shared decisions with your care team? Have you been able to use your own data to identify trends or trigger exposure? I would love to hear how you are using your data.
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