Article Text

Download PDFPDF

The benefits of electronic diaries in understanding the experience of health
  1. Devon J Hensel
  1. Correspondence to Dr Devon J Hensel, Section of Adolescent Medicine, Indiana University School of Medicine, 410 W. 10th Street, Room 1001, Indianapolis, IN 46202, USA; djhensel@iupui.edu

Statistics from Altmetric.com

Most clinicians and researchers have relied on patient or participant self-reported health information to overcome the constraints of eliciting these data in a clinic or laboratory setting. For example, time-dependent behaviours (eg, waking body temperature), or some sensitive or personal behaviour (eg, substance use or sexual behaviours) are difficult to directly observe in formal settings.1 Additionally, clinic-based or lab-based data collection may fail to capture how an individual's own ‘native’ circumstances and subjective experiences determine or modify a health behaviour.2 ,3 At the same time, it is important to safeguard the anonymity and confidentiality of self-reported information, as individuals may provide inaccurate data if they feel these elements have been breached.3

The use of electronic diaries has become an increasingly common data collection approach to maximise the ecological validity and the security of self-reported health information. Considerable diversity has evolved over the past decade in how electronic diaries are structured, in how frequently they are completed, and in the health phenomena they are used to study. As evidenced by their use to understand sexual behaviour,4 smoking cessation5 and substance use,6 asthma management7 seizure prediction,8 psychological state and disease symptomatology in old age,9 paediatric arthritis pain,10 and emotional regulation,11 electronic diaries can be a flexible and powerful way to intimately connect to the health experiences of others.

In this issue, Stalgaitis and Glick's12 systematic review of web-based diaries for understanding sexual risk behaviour serves as a useful illustration of some of the advantages and challenges associated with using any derivative of electronic diaries. As suggested here, researchers and clinicians need to carefully weigh expected gains in potential data quality with the time, personnel and financial investments needed to start and sustain an electronic diary-based project. A more in-depth review of several of these considerations is provided below.

Advantages of electronic diary platforms

The electronic diary platform provides programmatic benefits.4–6 13–15 For example, the diary can be designed to function across multiple web-enabled devices, including tablets or cell phones. This modality accommodates mixed questions formats (eg, fixed choice and free text, dichotomous, categorical or continuous, check box or sliding ‘rating’ type scales), as well as varying frequency (eg, once/day or multiple times/day and patterns of assessments, eg, at every diary, event contingent, or at random intervals) and multilingual versions of the diary instrument. It is possible to customise reminders/alters for participants regarding their starting/finishing a survey, submitting data, completing another arm of the study (eg, specimen collection), or communicating with study or clinical staff. All interactions a participant has with the electronic system can be time-stamped, allowing real-time description of compliance (eg, number of diaries started, completed, or submitted), and/or calculation of average completion time for specific questions, or for the entire diary. In some instances, a diary could be paired with other electronic ‘add-ons’ to enhance or supplement existing data (eg, ‘apps,’ video-sharing, chatting).

Electronic platforms are also uniquely suited to strengthen the security aspects of data entry, transfer and storage that are often of prime concern to participants or patients.4–6 ,13 ,14 ,16 For example, this format can control the time window in which data entry can be started or completed, or require additional log-in requirements (eg, device-specific or app-specific) prior to data entry. During and following data entry, information can be encrypted in real time, and immediately vacated from the device for storage on a remote server after submission. The latter may serve as a back-end mechanism for reducing the time dedicated to transcription and error checking. On the storage end, security can be further strengthened by limiting access to raw data to only key study or clinical personnel.

Finally, electronic diary platforms can be person-centred. For example, this technology may open recruitment to a wider array of potential participants. Mobile computing device ownership and daily use has increased considerably in preteen and aging populations, as well as in African–American, Hispanic and low-income families.17–19 This expansion means that much younger and much older individuals, as well as those at social/economic disadvantage typically considered to be ‘high risk’ or ‘hard to recruit,’ are likely already connected to a data collection device,2 and are already accustomed to the physical aspects of data entry (eg, entering text, using fingers to swipe pages or mark boxes, or submitting forms). Among all participants, daily use may decrease or eliminate study-training time,20 and facilitate communication with study personnel.4 Electronic diaries can also permit individuals more flexibility to complete data submission in a time and place of their choosing, potentially increasing comfort in disclosing sensitive information.

Challenges of electronic diary platforms

Electronic methods do present drawbacks.4 ,5 ,15 Technical and equipment failures will occur. Spotty wireless service or device can interfere with diary access, or with data transmission after completion. Front-end study expenses for programming can be considerable, particularly when a project is large, or when the diary instrument is complex. One means of absorbing this expense might be to consider how study infrastructure might be leveraged for a concurrent or future study. It can also be costly to provide a mobile data collection device (eg, a cell phone) and/or the internet or cellular service needed to complete the diary.4 However, these items could standardise the data collection process, as well as an additional source of participant incentives. Between 20% and 30% of study-provided devices will need to be replaced annually due to theft, damage, or general wear and tear. Protocol safeguards and clearly articulated use/replacement policies can help reduce these losses. While it can be tempting to choose a ‘cheaper’ or ‘older’ device to offset these costs, technology may advance over the course of a project, potentially leaving the chosen device or platform ‘outdated’ in the target population or requiring mid-study programming cost to retrofit a device or application.

Additionally, as Stalgaitis and Glick suggest, diary completion rates and behaviour reactivity can be a concern depending upon study length and periodicity of data collection. Front-end strategies to minimise these issues include adequate study planning (eg, assessing what data are needed vs what is a ‘reasonable’ diary length and submission schedule) and comprehensively training individuals during study enrolment. Compliance can be increased mid-study by staying in regular communication with participants regarding diary submissions (or other project-related data) and providing a clear troubleshooting plan when issues strike. While this more hands-on approach may not fit the structure of every health-related project, and it does require investment of study resources, it does speak to the fact that participants and patients who feel valued, connected and supported are generally more engaged and more compliant with the study protocol.

In conclusion, as individual-provided information increasingly becomes the focus of health research and heathcare, electronic diaries represent an exciting, fast-changing and flexible tool for understanding ‘true’ aspects of health-related experiences. Stalgaitis and Glick remind us that amidst the possibilities that electronic diaries bring, professionals need to be realistic about what efforts will be required to initiate a project using these tools, as well as what the data will (or will not) be able to reveal. While much remains to be learned about the ‘optimum’ application of this technology, electronic diaries offer incredible promise for eliciting data needed to better inform health promotion and disease prevention.

References

Footnotes

  • Competing interests None.

  • Provenance and peer review Commissioned; internally peer reviewed.

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

Linked Articles