Study suggests researchers should use social media ‘app’ websites to engage patients in disease surveillance

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More often than not, diabetes management poses a conundrum for clinicians and patients.

Our evidence supports driving patients to a clinical endpoint (e.g. targeted A1c), while also reducing negative outcomes (i.e. hypoglycemia).

This cannot be underestimated.

It can be seen in a publication in the New England Journal of Medicine which identified one of the most common medication related ER visits was due to insulin and associated drugs that cause hypoglycemia [1]. All too often, though, patient engagement in the management and reporting of their side effects goes unnoticed.

However, recent websites and social media groups (e.g. Patientslikeme.com) have created an outlet for patients to come together and share their experiences.

A recent study in JAMA utilized a diabetes online social media website, TuDiabetes.org, in order to determine if such an outlet can be of service as a participatory surveillance tool for patients [2]. The study was conducted from March 2011 to April 2012. Patients took 2 surveys about hypoglycemia and diabetes via the TuAnalyze ‘app,’ which was utilized to collect the data.

TuAnalyze is a part of TuDiabetes, which allows “privacy-preserving participating surveillance” for those that choose to participate with TuDiabetes [2]. Data collected included: hypoglycemic events, demographic information, usage of TuDiabetes, related harms to hypoglycemia, and those that choose to display their laboratory values via the app.

Over 2000 individuals were offered the survey, and close to a quarter responded. Demographics demonstrated a majority were white, female and in their 40’s in the US with Type 1 Diabetes (T1D) or Latent Autoimmune Diabetes in Adults (LADA).

Interestingly, 96.6% allowed recontact with the research team and 31.7% allowed their A1c to be displayed on their TuDiabetes profile [2]. There was a range of reported hypoglycemic events, with an average of six events reported for each person. This differed depending on type of diabetes, with T1D/LADA reporting hypoglycemia half the time,  and type 2 diabetics reporting almost 20% of the time. When users reported a level of 60-69 mg/dL it was noted as the first symptoms of hypoglycemia.

Analysis demonstrated that those reporting >4 low values of SMBG were female, younger in age, T1D/LADA,  had an insulin pump, dissatisfaction with diabetes healthcare, and an A1c <7%, among others [2]. Noted hypoglycemia was stated to  cause decreased physical exercise, and 15% reported having an accident or injury [2].

The results of this study lend some food for thought. Firstly, this could be arguable as a proof of concept for what the authors call “bidirectional communication” with users on a disease-oriented social network website [2]. This can be further supported by the fact that many of the participants wanted to continue future engagements with the researchers, and a large amount reported their patient specific data on their profiles. This study may lend some credence for researchers to use social-media sites or ‘apps’ set-up for their study to engage patients.

This may be especially powerful for diseases that are subjective (e.g. pain) or require patient engagement in an outpatient setting. Lastly, one thing that needs to be considered for those that do want to use this process is the demographics noted in this study, which could be a limitation depending on population sought.

Reference:
1. Budnitz DS, Lovegrove MC, Shehab N, Richards CL. Emergency hospitalizations for adverse drug events in older Americans. N Engl J Med. 2011;365(21):2002-12.
2. Weitzman ER, Kelemen S, Quinn M, Eggleston EM, Mandl KD. Participatory surveillance of hypoglycemia and harms in an online social network. JAMA Intern Med. 2013;173(5):345-51.

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