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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Asthma.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. SearchHealthIT. Patient-generated health data (PGHD). https://searchhealthit.techtarget.com/definition/patient-generated-health-data-PGHD. Accessed September 2019.
  2. Prashad R. Accessing the value of patient-generated health data. Journal of Hospital & Medical Management. 2018:4(1);1-5. doi: 10.4172/2471-9781.100044.

Comments

  • John Bottrell, RRT moderator
    4 months ago

    Another nice article, Dia. I have recorded data on my own asthma, at times. Although usually, like you, as soon as I start feeling better I forget about it. And by the time I go to doctors apppointments it’s obsolete anyway. Interestingly, my doctor said it would be nice to keep track of things. But he said he’s come to expect all his asthmatics to be the same way in this regard. Also, I was unaware there was a term for this. PGHD. Another term to add to our asthma lexicon. John. Site Moderator.

  • Gwen
    4 months ago

    What really helped me with keeping track of my asthma is the propeller app.

  • Leon Lebowitz, RRT moderator
    4 months ago

    Hi Gwen, and thanks for joining in this conversation. We appreciate you sharing what works for you with the community. Wishing you well, Leon (site moderator)

  • Leon Lebowitz, RRT moderator
    4 months ago

    Hi Shellzoo, and thanks for joining in the conversation here responding to Dia’s article. We appreciate your input and sharing your experiences with the community. Leon (site moderator)

  • Shellzoo
    4 months ago

    I don’t keep track of peak flows because they rarely are below my normal range and my provider does them on allergy shot days so they already have data over a few years. I think tracking rescue inhaler use would be helpful but have not done that yet. If I tracked over a year, I suspect I would see a pattern that coordinates with my known allergies. I have tracked my blood pressure for my primary physician and that data has helped adjust my blood pressure med dosage. For a while I had to email that data weekly.

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