Brent Mittelstadt , Ben Fairweather , Mark Shaw and Neil McBride
This paper is the result of a research project at De Montfort University to identify the ethical impact of Personal Health Monitoring (PHM) systems on the healthcare relationships between patients and their doctors and payers within the United Kingdom. The project is complementary to two other European research projects, PHM-Ethics and ETICA, which focus on ethical issues of emerging technologies. The aforementioned research project complements these projects by taking a patient-centric focus.
Personal Health Monitoring (PHM) technologies are currently being developed to supplement traditional “brick and mortar” medical care with health monitoring outside the hospital. A primary factor spurring the development of PHM is the rapid aging of the global population which will increase the burdens placed on current healthcare systems, in many countries outstripping available medical resources. The purpose of this paper is to provide a review of the available literature discussing ethical issues relating to development and implementation of PHM technologies as present in the United Kingdom. Papers that only discuss development or implementation but lack a discussion of ethical issues are also included in the review in recognition of a general lack of scholarship dedicated to the ethics of PHM thus far.
A clear definition of “Personal Health Monitoring” does not exist in the current literature. For the purposes of the literature review a working definition was established–Personal Health Monitoring refers to any electronic device or system that monitors a health-related aspect of a person’s life on a constant basis outside of a hospital setting. Recently developed examples include GPS tracking devices used with mental health patients, blood pressure wrist monitors and ambient assisted living environments. It is predicted by the authors that the widespread implementation of PHM technologies will have some of the following effects:
- An increased amount of accurate medical data will become available to some medical personnel.
- Patients will have the tools and information to increase control over their own health through examination of personal medical data as well as recommendations and alerts provided by PHM technologies.
- If doctors or paying organizations within the NHS are given access to PHM-derived data, the relationship between patients and these groups will change. As an example, if such data is used as a primary tool in diagnosis it may decrease the accuracy of diagnoses and alienate patients, as the chance exists for the account of the patient to be disvalued. Decontextualization of symptoms may take place if the patient’s account is ignored.
- Medication and treatment recommendations can be monitored for compliance.
- Patients will be in contact with medical equipment on a more regular basis.
Recognizing that “Personal Health Monitoring” is an emerging term not yet widely used in academia, complementary search terms were employed during database searches such as “personalized health,” “pervasive health,” “personal health,” “health surveillance,” “ambient assisted living,” and “smart homes.” Five databases were searched (PubMed, Scopus, IEEE, EBSCO, and CINAHL) from May 2010 to February 2011 to identify literature discussing the development, implementation and ethical issues relating to PHM technologies. Attention was given to the discussion of ethical issues (or lack there of) in each article, with the goal of reviewing the issues identified in the literature.
Ethical issues identified in the literature included problems of social integration and personal identify for “smart home” users, “medicalization” of the home environment, privacy concerns relating to data processing, patient and physical dependence on information technologies that may fail, lack of physical contact/examinations, and patient acceptance of new technologies. In some cases issues were identified through application of the Four Principles approach advocated by Beauchamp and Childress.
In general, ethical issues relating to development, implementation and data processing of PHM technologies were given little attention in the current literature. Although several issues were identified, none were given more than cursory treatment in the literature. As a result further research into these areas is both appropriate and necessary (preferably) prior to the widespread implementation of these technologies within the UK to ensure they are used in an equitable and beneficial manner. This work contributes to this need for scholarship by suggesting further ethical issues that may arise in the development, implementation and widespread use of PHM. Additionally, examples of PHM technologies are reviewed and common features are identified in an attempt to contribute to the development of a common definition of PHM. Although this is not the primary purpose of the paper, it is recognized that a common definition would be beneficial to the field. PHM technologies in development outside of the UK are also included in the review in recognition that such technologies may be used here in the future.