NSF/EAGER: Assessment of Barriers to Trusting Computer-Based Home Assistance
Paul Kantor (PI) and Cecilia S. Gal (Co-PI)
Jonathan Bullinger (Graduate Assistant)
Summary.
Computer instrumentation of living environments promises to extend the independent life span of our aging populations. This instrumentation is increasingly referred to as "computer assisted homes," "instrumented homes," and "wired homes" - a physical space employing monitors and sensors of human vital signs in real time networked to healthcare professionals. The contemporary version of this networked connectivity is the RFID tagged electronics and appliances found today within the home. This technological potential will not be realized unless people are willing to trust their lives to such support systems as a replacement for human support. Yet very little is known about how and why people make these important decisions to trust this technology and integrate it into their lives.
Our study, drawing on data collected in a large project to investigate this issue about how and why people agree to place their life in the hands of computerized equipment that they cannot fully understand or control. Since there are not yet people living in fully realized "computer assisted homes" as we have defined them, we choose, as a surrogate population, patients with cardiac ailments who have adopted a computer-dependent life-saving device, the implantable cardiac defibrillator (ICD). Our study used a progression of open-ended questions, in order to capture the decision-making process as patients themselves see it and describe it.
Trained interviewers contacted the respondents (persons who have an ICD) to complete a short telephone interview and completed 191 respondent interviews, in three different geographic locations: Central and Northern New Jersey, New Mexico and Tennessee.
Most of the 31 questions are open-ended and range over: the number of "shocks" received, documentation consulted while deciding, use of home monitoring, consultation with others regarding the decision, main concern(s) about the device, benefits/drawbacks of the device, why the decision was easy or a hard decision, negatives and positives about having the device, factors most helpful in making the decision, and demographic data such as gender, age and race/ethnicity.
Coding is described in detail in (Gal et al., 2011) and followed the principles of "grounded theory." The analysis reported in our findings was applied only to codes mentioned by 20 or more respondents (i.e., more than 10% of the total set of respondents). The detailed qualitative analysis (Gal et al., 2011) reveals that reasons for deciding to be implanted fall into two general categories. We conceptualize these as (1) contributing factors and (2) the patient's relation to the doctor. Within each category, sub-themes emerged as patients detailed their reasons. These themes are not exclusive, and most respondents report combinations of sub-themes. However, in many cases, some dominant theme seemed to emerge from the full interview, appearing in several answers.
Our respondents mentioned four general themes, with a spectrum of more detailed answers around each theme. These themes cluster around physical, psychological, and social reasons for acceptance of an ICD. However, some respondents also felt they had made no decisions in the process of getting the ICD implanted. These statements show less agency and these respondents tend to need less elaboration of the reasons for the ICD from the doctor when they speak about "just agreeing."
Not surprisingly, the decision to accept the ICD was triggered by a health incident and patients made decisions based on physical factors such as avoiding the recurrence of the health incident, or alleviating symptoms. Some viewed the ICD as the next step in an orderly treatment plan. Others saw it more as providing 24/7 emergency intervention on hand regardless of access to emergency personnel. However, the psychological benefits alone seem to make it worthwhile to have the device; patients who have never gotten a shock, seeming evidence that their heart is beating normally without aid, express no regrets about having had it implanted. For those patients who framed the decision in terms of their own feelings, the themes that were most prominent are anxiety reduction, a safety precaution and as a way to have control over their symptoms and health. Perhaps most relevant, having the ICD also emerged as a way to assert independence, such as being able to leave or stay out of the hospital, or not having to rely on others (such as emergency personnel or doctors etc.) to save them in an emergency; having the ICD as a way to have personal control over an unpredictable situation. Most respondents interweaved a number of reasons for the decision throughout their interview and we see the decision as determined by a combination of contributing factors as well as the doctor's role.
We anticipate that future research on the use of monitoring technology would benefit from an enhanced focus on the role that human experts will play within the relational dynamic between the technology user and a fully automated medical device. This will be particularly true when acceptance of such continuous monitoring may become a condition for continuing a satisfactorily independent mode of existence. We believe that, for persons leaning toward this view, it will be far better to have them engaged in the decision, than to have them feel in any way deprived of choice, with regard to home monitoring. All of these reasons seem to carry over, virtually unchanged, to the decision to live in an instrumented home. We believe that these "positive" concepts and themes will prove to be the ones that are most effective in generating a positive response to more encompassing computerized support, such as the assisted or monitored home or apartment. The generally positive response to the existence of monitoring technology may make the future monitored home environment a welcome option for patient care, especially if such technology is easy to use and easy to understand, and immediate benefits are apparent. A greater and more detailed explanation of the goals, function and value of the monitoring technology may be appropriate given the confusion expressed by some of our respondents with regard to the technology.
Since the most prominent foci for respondents in our study in making the decision to accept life-saving technology are anxiety reduction, a safety precaution and as a way to have control over their symptoms and health, as well as a way to assert independence; and as the decision for any one person is driven by a combination of concerns, a multi-pronged approach in presenting the "wired home" may be most appropriate to patients who need such solutions to managing their health problems.
Technical Report Qualitative Findings:
Gal, Cecilia S., Bullinger, Jonathan M., & Kantor Paul B. (2011).Peace of Mind: The Decision to Accept an Implantable Cardiac Defibrillator (ICD): Qualitative Findings. LAIR/TR-11/2011.
Technical Report Quantitative Findings:
Kantor, Paul B., Bullinger, Jonathan M., & Gal, Cecilia S. (2011). Trusting Technology with Our Lives: Patient Decision-Making and the Implantable Cardiac Defibrillator (ICD). LAIR/TR-10/2011.
Technical Report Codebook:
Gal, Cecilia S. & Bullinger, Jonathan M. (2012). A Theoretical Framework for Patient Decision-Making: The Case of Implantable Cardiac Defibrillators. LAIR/TR-2/2012.
In Press:
Kantor, Paul B., Bullinger, Jonathan M., & Gal, Cecilia S. (In Press). Patient Decision-Making Modes and Causes: A Preliminary Investigation. (Draft). This is a preprint of an article accepted for publication in Journal of the American Society for Information Science and Technology © [2012] (American Society for Information Science and Technology).
This project is supported by the National Science Foundation (#NSF EAGER IIS-0945192 1/1 and NSF IIS-0945192 1/1-REU I and REU II).
The tiny url for this page is: http://tiny.cc/rkB4q