Ethical Challenges of E-Health

Monographs of the Víctor Grífols 20 i Lucas Foundation Ethical challenges of e-health Ethical challenges of e-health Monographs of the Víctor Grífols 20 4001/1 1/12/09 20 i Lucas Foundation Ethical challenges of e-health ISBN 978-84-692-4802-7 Monographs of Edita: Fundació Víctor Grífols i Lucas. c/ Jesús i Maria, 6 - 08022 Barcelona the Víctor Grífols 20 [email protected] www.fundaciogrifols.org i Lucas Foundation Ethical challenges of e-health CONTENTS Page Presentation Vladimir de Semir ............................................. 7 Working paper. Ethical challenges of e-health Gema Revuelta and Cristina Aced................................ 10 Case study: the virtual nurse portal Gisel Fontanet................................................. 40 Feedback from working groups ................................. 50 List of participants ............................................ 66 Publications .................................................. 68 5 Ethical challenges of e-health PRESENTATION The President of the United States, Barack Obama, has proposed creating a public health service in the United States. The programme, which seeks to correct this glaring deficiency in the world’s most powerful country, includes e-health as a key element, confirming the significance of this technological option in addressing the challenges faced by universal health care in the 21st century. The Pew Research Centera in the United States, which analyzes public opin- ion and public attitudes, has been carrying out the Pew Internet & American Life Projectb. This is a long-term study which considers the impact of the emergence of the internet on all of our daily lives, and looks at the significant changes brought about by the use of this technology and this vehicle for accessing knowledge. In 2005 an early report on Health Information Onlinec identified health as one of the sectors which would change most in the com- ing decade, together with publishing, the media, education and government. It also highlighted the fact that the vast majority of internet users in the United States use the web to access health information. Naturally enough, this sort of search has rapidly been extended to all sorts of online services, such as the sale of drugs, diagnostic tests, and first, second and third medical opin- ions. Nobody can ignore both the benefits and the drawbacks (even the dan- gers) which may arise from the fact that this method of managing health resources is becoming increasingly common in societies where the level of education varies widely. A good example of the profound changes which are occurring in this regard comes from a study published in the journal Atención Primariad which found a. http://pewresearch.org/ b. http://www.pewinternet.org/ c. http://www.pewinternet.org/topics/Health.aspx d. Mira Solves, José Joaquín; Llinás Santacreu, Gilberto; Lorenzo Martínez, Susana; Aibar Remón, Carlos. «Uso de Internet por médicos de primaria y hospitales y percepción de cómo influye en su relación con los pacientes». Atención Primaria; 41(6):308–314; June 2009. 7 Ethical challenges of e-health that patients frequently ask doctors about information they have obtained from the internet. It revealed that 96% of doctors have received questions from patients who had checked the internet for information or obtained further information about their diagnosis which they then wanted to discuss with their physician. As a result, 31% of doctors believe that the internet compli- cates their relationship with their patients and undermines their credibility. We should also remember that e-health affects all those aspects of health care which rely on information and communication technologies, such as electronic medical files, telemedicine (physical and psychological tests which do not require a face-to-face encounter), the dissemination of information, and virtual healthcare teams (professionals who work together and share information about patients as members of digital teams). In Spain it is estimated that over 40% of people use the internet to look for health information, mak- ing it a major focus of innovation and an area with massive potential for the future. However, it should also be noted that there have been very few studies of its influence and impact to date. The Víctor Grífols i Lucas Foundatione and the Scientific Communication Research Centre of the Pompeu Fabra Universityf organized a discussion day under the heading «The ethical challenges of e-health», the results of which are presented here. We hope this will encourage further debate and contribu- tions from those experts from across the health industry who are involved with this major tool which, if used appropriately, offers the potential to improve both individual and collective health. Victoria Camps President of the Víctor Grífols i Lucas Foundation Vladimir de Semir Director of the Scientific Communication Research Centre, Pompeu Fabra University e. www.fundaciogrifols.org/ f. www.upf.edu/occ 8 9 Ethical challenges of e-health Gema Revuelta and Cristina Aced Scientific Communication Research Centre Pompeu Fabra University Ethical challenges of e-health In just a few decades the expansion of the internet has given rise to significant to privacy are the most obvious examples, but there are many more ethical changes in the field of health. These transformations have had an impact not issues we could identify. only on health information, but also on health care itself, on the relationships While it is therefore essential to consider carefully which are the principal between different groups, on the management and organization of health challenges posed by the expansion of e-health, it is also vital that we address systems, and on almost every sphere one could imagine. this in a clearly defined manner, with reference to specific environments or The scale of the change is such that it is hard to believe it has occurred in such issues. For that reason, in this document we will consider six key dimensions a short space of time. As a result, it is not only the young who sometimes find of e-health, each of which has its own characteristics, offers specific opportu- it hard to believe that the internet has not always been with us; adults of all nities and poses particular ethical challenges. These six dimensions are iden- ages often struggle to recall what life was like without it. How did we manage tified in the diagram below. However, it should be noted that these are not to find information, exchange documents or images, call a meeting, organize independent or separate but are instead closely interlinked, and the bounda- a trip or just communicate with someone on the other side of the world with- ries between them are not always easy to identify. out incurring a massive phone bill? Another example is to be found in terminology. In the health field, terms Dimensions of e-health such as electronic health card, shared medical records, telemonitoring, health 2.0 or «e-health» itself abound in articles, reports, conferences and web-based resources of all types. As with the internet itself, the timeframe within which information these terms were created and have entered professional jargon has been remarkably short. Indeed, new terms appear with such breathtaking speed that scarcely have we begun to grasp the meaning of one concept than anoth- telemedicine business er appears on the scene, demanding renewed efforts of comprehension and recall. E-HEALTH The term «e-health» was perhaps one of the earliest to be coined, and it is research relationships undoubtedly one of the most frequent. Indeed, it has been in use for such a long time (if we compare it to how recently the internet became part of the general landscape) that one might almost expect the concept to have become cooperation obsolete. However, it appears to have resisted the pressures of time and con- tinues to be the best way of encapsulating the relationship between the health sector (in the widest sense) and the vast range of electronic resources which constitute the internet. From an ethical perspective, the development of e-health raises a lot of ques- For each of these six dimensions of e-health we will review what they mean, tions, because a single process affects –or has the potential to affect– all sorts will describe the current situation, give some examples, and analyze some of of different areas. The right to information, the right to health, and the right the ethical issues associated with them. 12 13 Ethical challenges of e-health Although this document is based primarily on the situation in Catalonia and tions and support groups, although their aim was to find emotional support the rest of Spain, many of the examples and applications it considers are rather than information. drawn from other areas or are international or global in scope. Regarding frequency of use, the same study concluded that 45% of users look for health information less than once a month, 25% more than once a week, and only 7.5% do so on a daily basis (although it should be noted that approx- 1. Information imately 80% of these were health professionals). It should be noted that, although the volume of users looking for health information on the internet Of all the possible applications of the internet to the health sphere, searching appears from this survey to be quite high, the percentage who used it in an for information is clearly the most frequent. In common with other European attempt to diagnose their own health problems was much lower (12.2% of countries, the use of the internet to find information is very frequent in Spain. those surveyed), as was the proportion of users who attempted to treat a The following figures give some idea of this. According to a survey by the health problem on the basis of information from the internet (10.8%). It National Institute for Statistics, in 2008, 51% of Spanish homes had access to therefore appears that users consider the internet to be useful and practical the internet.1 Of these, according to the same survey, more than 17 million but are aware that it does not replace professional doctors.

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