What’s on the web for nephrology?

Praveen Ande, Diana Chiu, Scott Rayner, Robert A. Coward, Alexander Woywodt

Dr A. Woywodt

Renal Unit

Lancashire Teaching Hospitals NHS Foundation Trust

Preston, Lancashire, United Kingdom

Introduction
The use of the World Wide Web has increased dramatically during the last two decades. This trend within the general population did not spare patients and relatives: A recent report described an increase in the use of the Internet by patients to retrieve health-related information from 16% in 2000 to 55% in 2006 among patients who attended an ear/nose/throat clinic 1. Similar data in renal patients are lacking but it is tempting to speculate that Internet use may be even more frequent, not least due to the complexity of diseases and treatments in our field. The use of the Internet by health-care providers has increased dramatically as well and numerous websites compete for our attention. Here, we try to review what the Internet has on offer, both for renal patients and relatives and for their health-care providers. We focus on resources in English although we appreciate that good websites also exist in many other languages.

Online resources for patients with renal disease

A recent study from Canada demonstrated that the majority of dialysis patients (58%) there had used the internet to access medical information 2. Proponents of internet-based patient education argue that this serves to empower patients, carers and relatives 3. However problems must be reckoned with: First, the quality of information may be very variable and must be kept up-to-date. Secondly, information is often written in language beyond the general public's reading comprehension 4. Language itself may be another problem and a study from the US demonstrated markedly reduced use of the internet by Spanish-reading renal patients 5. Furthermore, the use of the Internet use may vary hugely among our patients whereby younger and more educated patients may employ it more. Therefore, we need to appreciate that elderly, and less IT literate patients may not be amenable to online education. These differences were also demonstrated in the Canadian study: Internet use was much more common (86%) in home haemodialysis patients who are usually younger and very interested in their disease. Finally, not all websites adhere to established standards, such as the Health on the Net Foundation Code of Conduct (HON Code) 4. We have compiled a list of English-speaking websites (table 1) and present a selection in alphabetical order:

American Association of Kidney Patients (AAKP) (http://www.aakp.org)
This is a patient-driven US website that focuses on many aspects of dialysis, including access, nutrition and blood tests, as well as transplant matters (Figure 1). It also contains a library of kidney disease that is searchable. This website is professional in its layout and there is a large section in Spanish. It is also an impressive example of the widespread use of these websites in general: This site attracts 120,000 unique users per month on average (AAKP, personal communication)!

Homedialysis (http://www.homedialysis.org)
This niche website focuses on peritoneal and home haemodialysis. It is comprehensive with message boards, newsletters, patient stories (Figure 2) and advertisements for dialysis centres. We see its role particularly for the home haemodialysis candidate: There are few, if any, resources for these patients and this website helps to close this gap although it focuses on the US system and advice may not be directly applicable in other countries.

National Kidney Federation UK (http://www.kidney.org.uk)
This institution serves as an umbrella for the 69 local kidney patient associations (KPA) in the country. Accordingly the focus of this website is on resources for renal patients in the UK. It is indeed vast with more than 5000 pages and serves as a hub to the renal community in the UK. Books for renal patients are also on offer.

National Kidney Foundation (USA) (http://www.kidney.org)
This American website is maintained by a leading US renal patients’ association, NKF. Not surprisingly, it is a vast website. Its particular strength is a huge collection of patient information material, which is available for download as PDF. Most of the material is also available in Spanish.  The quality of the material is very high and uncommon topics, such as end of life care, are also covered.

Kidneypatientguide™ (http://www.kidneypatientguide.uk)       
This is an interactive UK website that provides useful information about living with kidney disease. It is easy-to-use and covers topics from claiming social benefits to arranging holidays for patients newly diagnosed with kidney disease.

Kidneyschool™ (http://www.kidneyschool.org)
This is a very structured US website with a series of on-line modules that educate about kidney disease and, in addition, how to live with the condition. It is interactive with questions and diagrams (Figure 3). We particularly liked the positive attitude (e.g. the chapter “Living Successfully with Kidney Disease”). There is also advice for doctors and nurses with creative ways to use this website as an educational tool.

Renal Support Network (http://www.rsnhope.org)
The Renal Support Network, a non-profit patient-run organization, created this US web page. This is a patient centred web-space with patient forums, event calendars, and radio shows. We particularly liked the highly entertaining KidneyTalk pod cast. Stephen Furst, an American TV presenter and kidney patient, and Lori Hartwell, author of “Chronically Happy - Joyful Living in Spite of Chronic Illness”, host this pod cast. We see its role in providing up-to-date information and fun primarily for US patients with kidney disease.

Websites hosted by individual patients, blogs and social networking: Facebook in nephrology

Websites hosted by individual patients are a first step towards networking in what may be regarded as the global community of renal patients (Table 2). They may offer the story from the patients’ perspective and in doing so reassure patients who have been newly diagnosed with renal disease. Many of these websites are well-designed (Figure 4) and often full of joy and humour. They may also be of interest to the nephrologist in that patients describe their experience with the disease as well as with different doctors. In addition they provide amazing insight into coping mechanisms.
Social networking on the Internet is an increasing trend globally. Not surprisingly, this trend has now reached the renal world and renal groups have emerged. The largest (http://www.facebook.com/group.php?gid= 2229039880) has grown to 2501 members in December 2008 and continues to grow. We are not aware of how this compares to an “average” Facebookä site. Suffice to say that in total Facebook attracted 132.1 million unique visitors in June 2008. This site allows easy posting and chat for patients with kidney disease or transplant in the Facebook environment that many of our young patients are familiar with already.

Online resources for nephrologists

Learning in Renal Medicine has come a long way from the days of lectures and textbooks. In addition, the internet may be used for making a diagnosis in clinic: The use of Google™ in diagnosing difficult cases has been described 6 and a recent case report in the New England Journal of Medicine reported that the “Google strategy” arrived at the correct diagnosis in the first two hits 7. Access of medical information by health care professionals may seem rather innocent and without obvious problems but it is not. A recent study examined the qualifications of respondents who provided advice in a paediatric nephrology sub-specialty forum 8. Surprisingly, the respondents had a broad variety of qualifications whereby out of the eight most frequent providers of advice only three were board- certified in paediatric nephrology 8. Even in seemingly unbiased and well-established resources, such as Uptodate™, one has to appreciate that the advice given may only represent a part of the spectrum of current practice and that not all of the information may be peer-reviewed. Finally, some sites are sponsored or even provided by the pharmaceutical industry. These websites usually insist on their editorial independence but subtle and less subtle ways of bias are conceivable 9.  We have compiled a list of websites for nephrologists (table 3) and discuss a selection in alphabetical order:

HDCN (Haemodialysis Clinical Nephrology) (http://www.HDCN.com)

This is primarily an educational website that is endorsed, among others, by the American Society of Nephrology. It was founded by Dr. J.T. Daugirdas, a prominent US nephrologist, and is divided into a free and key area. The latter is only available after paid subscription. This website hosts and excellent selection of articles and talks, both in audio format and as slide presentations. One minor criticism is that audio talks may be somewhat less useful at holding the listeners attention although they may still serve their purpose during a long daily commute or on the plane. Another minor issue is that the flow of emerging lectures is variable and some lectures may be outdated. Nevertheless this is an excellent resource, for example if one is tasked with an unfamiliar lecture subject: A structure for almost any talk will be readily available as well as some ideas on how to tackle difficult topics.

NDT educational (http://www. ndt-educational.org)

This website can be regarded as the European pendant to HDCN. It is primarily educational with presentations in slide format as well as full paper reviews. It also serves as a communication tool for the European renal community and online polls are also available. Highly entertaining interviews provide an opportunity to get to know famous European nephrologists.

Nephrology Now (http://www.nephrologynow.com/)

This website regards itself as “an editorially independent and free service to help you stay up to date with new developments in Nephrology”. Genyzme sponsors it. Monthly issues feature numerous journal articles with some full text access, not least from Journal of the American Society of Nephrology (JASN). A particular strength of this website is that articles from the non-renal world are also included as well the forum for online discussion of recent articles. This sounding board for research may be somewhat faster than traditional letters.

Nephrology Rounds (http://www.NephrologyRounds.org)

This website is edited by Drs Brenner and Bonventre at the Nephrology Division of Brigham and Women's Hospital. Sponsored by Amgen, it focuses on education and comes in regular issues with one review article and added CME questionnaire. A regular scientific update is in the pipeline

U Kidney – Internet School of Nephrology (http://www.ukidney.com)

This is once again a good website, moderated by Dr. Jordan Weinstein from Toronto, Canada. Access is free. It hosts a moderate number of presentations of good quality. A collection of videos (“Youtubule”) was introduced very recently. We also liked the free online access to the Kidney Atlas – excellent material for lectures.

Uptodate™ (http://www.uptodate.com)

This is the surely the most extensive and widely used online resource in medicine today, not least due to the fact that its founder, Burton Rose, is a nephrologist. It features evidence-based reviews of diseases and guidelines for management compiled by opinion leaders in the respective field. Where there is a lack of proper evidence Uptodate™ provides common practice and recommendations. There is also a section with patient information material. An excellent and must have resource that is also available, via subscription, as a stand-alone software for computers and handhelds.

Conclusion
The increased use of the Internet has undoubtedly benefited doctors and patients although potential problems need to be appreciated as well. Whether we like it or not: the Internet is a reality that is constantly expanding and the average patient under the age of 50 will probably consult the Internet after a first appointment with the nephrologist. The 120,000 or so unique users who attend the AAKP website every month and the increasing use of social networking within the renal community underpin this assessment. It is for us to choose: Either Google™, Yahoo™ and the pharmaceutical industry decide on what our renal patients know about their disease or we endeavour to provide some guidance through this plethora of information. In our unit we provide a leaflet entitled “Books and websites for patients with kidney disease” and this approach is very popular, especially among younger patients, relatives and carers. Further uses of the internet include new ways of communicating with patients, electronic health records, and much more. The profound implications for the relationship between patient and doctor are discussed elsewhere 10. We hope that the resources presented here encourage others to include the internet into their structured framework of patient education.

TABLES

Table 1: Web sites for renal patients (accessed December 12, 2008)

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Table 2: Sites maintained by individual patients and blogs (accessed Dec 12, 2008)

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Table 3: Web Sites for nephrologists and other renal professionals (accessed December 12, 2008)

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Figure legends

Figure 1: Screen shot from the AAKP website (http://www.aakp.org/, accessed Dec 20, 2008)

Figure 2: Screen shot from Homedialysis Central (http://www.homedialysis.org/ accessed Dec 20, 2008)

Figure 3: Screen shot from Kidney School (http://www.kidneyschool.org/, accessed Dec 20, 2008)

Figure 4: Screen shot from “The life of a twenty-something with lupus” (http://flowonlupus.blogspot.com/, accessed Dec 21, 2008)

Correspondence and offprint requests to:
Dr Alexander Woywodt, FASN, Consultant Renal Physician, Renal Unit, Lancashire Teaching Hospitals NHS Trust, Royal Preston Hospital, Sharoe Green Lane, Preston, PR2 9HT, UK
E-mail: Alex.Woywodt@LTHTR.NHS.UK