Thursday, April 5, 2012

When Publishing Changes, So Does Society: Medical Practice and Patient Empowerment from the Printing Press to Web 2.0

Assignment Three - Judith Dyck

The introduction of the Gutenberg printing press amplified the “amount and variety of what was available and accessible to readers” (Nutton, 2005, p. 426). This increased what Graf (2011) calls the “flow of communications” and provided increasing numbers of people with access to information (p. 87). The corresponding parallel today is the rising availability of access to information and connectivity via the internet, with its search engines, volumes of webpages and social media tools.

Health Information Post-Gutenberg into the 1500s
When the printing press came into wide use in fifteenth century Europe, it had a significant impact on the spread of health information, both to physicians and to literate households in Europe. Books were already part of the physicians’ culture, but lay people also began purchasing books containing information on anatomy, recipes for medicines and advice on treatment of illness and infirmity (Nutton, 2005, pp. 422, 426 – 427). This transfer of medical learning to a wider audience “democratized” the information: Physicians who didn’t reside in university centers and households across Europe could readily share in knowledge from previous centuries, as well as new information as it became available (Nutton, 2005, pp. 427- 428). 

For households, the desire for health information was partially driven by a desire to avoid or treat disease, as can be seen by the proliferation of plague tracts.  In the mid-1400s, Europe was emerging from a century of plague and outbreaks still occurred. This led people to seek advice from physicians and universities and provided a market for plague tracts on how to avoid and treat the disease (Nutton, 2005, p. 433). Over 500 known from the 1500s still exist and comprise seven percent of known medical printing from the time, speaking to their popularity. Many were printed in everyday languages such as Dutch, German and French and are often in poor condition, attesting to their use. This is in contrast to more costly illustrated editions of medical works, which are often found in pristine unread condition and published in Latin, the language of the scholar (Nutton, 2005, pp. 423, 431 - 432). The abundance and use of plague tracts demonstrates that the power of the printing press in spreading medical information beyond the community of physicians, or as Mumford (2011) said, “...printing broke the class monopoly of the written word” (p. 77). More information can be found in the blog posting at

From the Printing Press to the World Wide Web
Similarly, publishing on the internet has democratized the availability of health information today. Health care in North America in the 20th century was largely organized through institutions and professional groups. Physicians acted as gatekeepers and people were recipients of healthcare, rather than participants. Web 2.0 and online publishing are breaking down those barriers. Information formerly unavailable to lay people is now readily accessible. This is providing people with the information and tools needed in order to control their health care (Eysenbach, Sa & Diepgen, 1999; Jadad, 1999; in Hordern, Georgious, Whetton & Prgomet, 2011, p. 6). 

Access to social media and information published online can help bridge the gap between the doctor’s office and the life of the person with a chronic condition, supporting them in leading the healthiest life possible for them. Hordern et al. (2011) identified five areas in which the internet is playing a part in consumer health and changing people’s expectations of the system and their own response to health concerns: 
  • Online support groups;
  • Self management and monitoring applications;
  • Tools to assist in decision making; 
  •  Personal health records; and
  •  Internet use (p. 7).
Online support groups are forums where people with similar health concerns can gather to share information and offer and receive support (Bane, Haymaker & Zinchuk, 2005; in Hordern et al, 2011, p. 5). As a result of their online interactions, people report that they feel better able to manage their condition, have better health outcomes and are less lonely (White & Dorman, 2001; in Hordern et. al, 2011, p. 7). Still, online support groups are rarely overseen by healthcare practitioners and there is the potential for erroneous information or procedures not rigorously tested becoming inculcated and putting people at risk (Winzelberg, 1997; Dickerson, Flaig & Kennedy, 2000; in Hordern et al, 2011, p. 7). Go to for an example of an online support portal or to for an article on starting a blog as a way of coping with a disease.

Self monitoring (e.g. checking blood pressure at home) and self management of chronic diseases have been linked to improved quality of life and can help people follow the recommended guidelines for their condition (Harris et al., 2008; in Hordern et al, 2011, p. 8). However, self monitoring in some instances has been shown to lower quality of life, with people reporting higher levels of distress, worry and depression than people not self-monitoring (Franciosi et al., 2001, in Hordern et al., 2011, p. 9). This would indicate the need for greater professional oversight to ensure that the monitoring has a beneficial effect.
Online tools to help people make decisions about different courses of treatment have some of the same benefit/drawback features of online support groups and monitoring. While they can assist in better decision making, they aren’t sensitive to individual health histories and personal circumstances (O’Connor et al., 2003; Billings, 2004; Woolf et al. 2005; in Hordern et al., 2011).

In a personal health record (PHR), the individual owns and manages their health information collected from a variety of sources, in contrast to the more common electronic health record which is controlled by a health provider or organization. In various studies, people have indicated that they would find a PHR useful, would be empowered by having access to their information and would be better able to manage their care (Hordern et al., 2011, p. 10). Employers in the U.S. are increasingly opening the door to their employees having a PHR as a way to support healthy living  (, n.d.). 

People also use the internet to acquire health information from published sites –Mayo Clinic runs such a site at At times, they use the internet after seeing a health provider to get more information and better understand the diagnosis and treatment plan they have been given (Gauld, 2011; in Hordern et. al, 2011, p. 11). Sommerhalder et al. (2009) found that practitioners felt that patients who sought out information on the internet were better informed and posited that when the practitioner and patient discussed the information found on the internet, patients were better able to personalize their treatment plan and empowered to take responsibility for their care and health outcomes (in Hordern et al, 2011, p. 11). Eland-de Kok, van Os-Medendorp, Vergouwe-Meijer, Bruijnzeel-Koomen & Ros (2011) found that chronically ill patients showed some slightly better results when they were offered e-health interventions instead of or in addition to other primary care (p. 1). 

Implications for the Future
Seth Godin says the internet turns scarcity into abundance and that is certainly true of health information on the internet (, n.d.). On a different scale, but still at meaningful levels, the printing press had the same effect. Just as the change in publishing technology did during the Renaissance, publishing on the internet and Web 2.0 tools are changing people’s relationship to health providers, empowering them to better manage and participate in their own healthcare. This access is showing signs of helping to improve health outcomes. People have always had a greater awareness about how they are feeling than anyone else could possibly have. Self-knowledge armed with the information and tools of the internet could actually be heralding something other than the oft noted age of the amateur – the empowered self-expert.

This isn’t a signal that the era of medical experts is over, but it is changing their role. Depending on how health care professionals respond to the new dynamic, an empowered patient and technologically equipped health care provider could provide stronger ties and more effective interventions. This will require a higher level of digital literacy amongst health professionals. While this might be expected as something that will develop as a matter of course as people born in the age of the internet start to enter the professions, Hanik & Stellefson (2011) found that students enrolled in health education at the undergraduate level had lower than optimal levels of e-health literacy (p.2). Deliberate education in digital literacy will be required.
The biggest disconnect appears to occur in the area of digitally mediated patient contact with their provider (See table one). Greater participation by providers in the conversation could increase the benefit of digitally mediated interactions. Consider the example of a patient with epilepsy. The patient’s neurologist provides her with access to an epilepsy nurse and a digital app called My Epilepsy Diary (, n.d.). These are good tools and services. However, the digital diary isn’t electronically accessible to the nurse or physician and thus they can’t monitor her condition remotely or receive alerts when she is having problems. There is no way for the patient to contact the nurse other than by phone – no e-mail, no texting, etc. When the patient experiences a seizure, she finds it very difficult to collect her thoughts for a phone call and leaving a message is even more stressful. However, she’s young and hip and doesn’t experience the same issues with texting or email (personal communication, n.d.). The lack of transliteracy on the part of the provider is a barrier to care when it critically required by the patient.

Table One

E-Health Format
Type of E-Health Interaction
Patient to patient
Patient to web-based information or app
Digitally mediated patient-provider
Provider/health expert to internet
Online support groups
Self management and monitoring applications
If it occurs, not always digitally mediated
Tools to assist in decision making

If it occurs, not always digitally mediated
Yes, in preparation of the tool
Personal health records
Internet use to access information

Using e-health tools to connect the patient with the provider may be where the biggest improvements to health outcomes will be found. Social media tools have the potential to provide a powerful feedback loop or virtuous cycle of care between patients, their own actions, their interactions with e-health tools and information, and practitioners. Health experts are sitting outside the loop at present and while they are feeding information into the loop, they are not monitoring its effect in the same way. 

Just as the printing press put health information into the hands of consumers during the Renaissance, the new publishing technology of the internet is doing the same today. Its impact on health outcomes is only beginning to be understood. Disconnects between the health expert, the online community, information published on the internet and consumers need to be bridged. 

CBC Radio. (April 3, 2012). Accessed from

Epilepsy therapy project. (n.d.). Accessed from

Eland-de Kok, P., van Os-Medendorp,H., Vergouwe-Meijer, A., Bruijnzeel-Koomen, C., Ros, W. (2011). A systematic review of the effects of e-health on chronically ill patients. Journal of Clinical Nursing, 2011 Nov; 20(21/22): 2997-3010

Graf, H. (2011). Early modern literacies. In D. Crowley and P. Heyer (Eds.), Communication in history: Technology, culture, society (pp. 86–95). Boston: Allyn & Bacon

Hanik, B., Stellefson, M. (2011). E-health literacy competencies among undergraduate health education students: A preliminary study. International Electronic Journal of Health Education, v14 pp. 46-58, 2011. Retrieved from

Hordern, A., Georgious, A., Whetton, S., Prgomet, M. (2011). Consumer e-health: An overview of research evidence and implications for future policy. Health Information Management Journal Vol 40 No 2 2011, pp. 6-14. Accessed March22, 2011 from

Mumford, L. (2011). The invention of printing. In D. Crowley and P. Heyer (Eds.), Communication in history: Technology, culture, society (pp. 74-86). Boston: Allyn & Bacon

Nutton, V. (2005). Books, printing and medicine in the Renaissance. Medicina nei Secoli: Arte e Scienza, 2005,Vol. 17 Issue 2, pp. 421 – 442. Journal of History of Medicine.

Sources for images used in the podcast

Gutenberg Printing Press.Accessed from,r:19,s:0,i:131&tx=68&ty=92

Elyot, Thomas, Sir, 1490?-1546. Castel of Helth.
Page Turner - PDF (90.6 MB) - Bibliographic Information

Diabetes Checklist. Accessed from,r:2,s:0,i:68

Man, Doctor & Stethoscope. Accessed from,r:23,s:0,i:111

Man on Scale. Accessed from,r:5,s:122,i:154

Woman testing blood sugar. Accessed from,r:77,s:0,i:9

Woman and health professional consulting. Accessed from

The Networked PHR. Accessed from

eHealth. Accessed from,r:5,s:115,i:77

Learn more about smart phone apps image. Accessed from

BMI/BMR Calculator. Accessed from

Glucose Buddy. Accessed from

Nutrition Facts. Accessed from

Meditate - Meditation Timer. Accessed from


  1. In the Year of Wonders (set in "The Plague") a medical book plays a key role. I think if you asked a Doctor if they like the "empowered patient" they would say yes, but I wonder if that's what they say privately! In the Nursing program at UNB Saint John students are using iPods and iPads to help figure out this world, and experience apps like "track my pregnancy".

  2. Interesting article Judith! I'm sending you my comments via e-mail.

  3. It's too complex and very wide for me. I'll look forward to your subsequent post and try to get the cling of it. Thank you.

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