Patient Information on the Internet

Myles Clough, M.D., FRCSC
Kamloops, BC

Orthopaedic patients obtaining information from the Internet is perhaps one of the most contentious issues in orthopaedic informatics. It may be an irritant when patients gather misleading or contrary information about their condition, it may be time consuming as they bring in pages of information to discuss with you. It may even occasionally be embarrassing when they unearth information about their condition which you were not aware of. Nothing emphasizes more acutely the change in the information landscape. Whereas in the days of print, patients had access to general medical knowledge at the Readers Digest level, now they have access to medical information at the specialist level and may not be equipped to comprehend and use it. This article explores the explosion in patient information and suggests that much of it is misdirected.

If you do a Google search using the search string patient (information OR education OR guide) (tear OR torn) (meniscus OR cartilage) you obtain 335,000 pages. Table 1 shows the origin and nature of the first 20 pages found by this search. The sites found divide into:

  • Pro Bono. These are high level sites whose primary aim is to inform patients.
  • Come Hither. These are pages posted to attract patients to a particular orthopaedic practice.
  • General Health Pages. Part of an encyclopaedic site covering the whole of medicine. The level of information is more general.
  • Directories. These offer lists of web site addresses pertinent to the query.*
  • Marketing. These sites offer to sell products to orthopaedic surgeons, including patient education materials.

Table 1. Results of a Search for Patient Information About Torn Meniscus

Type of Page

Originating organization

Level of information

Number of pages

Pro Bono

COF, AOSSM

Orthopaedic

2

Come Hither

Practice Web sites

Orthopaedic

8

General Health Pages

Health Portals

General

6

Directories

Orthopaedic Web Links*

Lists of Patient information pages

2

Marketing

Suppliers of patient information and orthopaedic equipment

Accounts of products available

3

Very few of the sites that provide the best level of information for orthopaedic patients do so pro bono. The Canadian Orthopaedic Foundation and the American Orthopaedic Society for Sports Medicine do provide high quality information without an obvious commercial element. If one ran the search with a less finely tuned search string, the yield of useful information would be even lower.

Clough & Oliver (2002) proposed a list of content headings that should apply to most orthopaedic conditions. Table 2 shows that these topics divide into headings descriptive of the condition, of non-operative treatment and of operative treatment respectively.

Table 2. Content Criteria for Patient Information Resources

The Condition

Name.

Synonyms.

Pathological process.

Symptoms.

Stages.

Complications of the condition.

Prognosis of the untreated condition.

Commonly used investigations.

Non-Operative Treatment

Description of treatment.

Risks of non-operative treatment.

Recovery time for non-operative treatment.

Outcome from non-operative treatment.

Operative Treatment

Procedure(s).

Indications for surgery.

Risks of operative treatment.

Complications of surgery.

Postop recovery time.

Postop prognosis.

Further information (e.g. rehabilitation).

Cost of surgery (where applicable).

Location.

Illustrations

Drawings.

Photographs.

X-rays.

Video.

This list was proposed as part of a method of evaluating patient information. At its crudest, one could count up the number of headings which were covered to any degree in the information resource. At a more refined level, one might evaluate the quality of coverage of each topic. The list may be criticized as being too long and detailed. The question then arises - which items of information would you leave out on a systematic basis? Computer systems allow us to present this information in hypertext form. This means that the reader can choose what he or she wishes to read. If one accepts this list and takes it to any of the pages described in Table 1, one finds that all these pages are deficient in their coverage of significant areas.

This, however, is the orthopaedic surgeon's eye view of the situation. In 2003 a paper was presented to the Canadian Orthopaedic Foot and Ankle Society (COFAS) describing the patient information needs of patients with broken legs. The archives of the patient support group MyBrokenLeg (http://www.mybrokenleg.com/) were analysed over an eight month period. At the time the group had no input from orthopaedic surgeons but consisted of patients giving each other advice and encouragement. It therefore provided a window on the unmet information needs of this, admittedly self-selected, group of trauma patients. "Threads", defined as a topic raised by a member of the group which may then lead to a discussion, were identified, classified and enumerated. Of 281 threads identified in the study period, 38% were stories' - the patients' accounts of their situation. These were not further studied. 175 other questions and complaints were noted which fell into 66 distinct primary subject areas. The broadest classification of these concerns was: Symptoms (29%), Complications (7%), Treatment (34%), Medical Information (11%), and General Subjects (17%). Note that there was very little emphasis on Medical Information and Complications, two of the areas that we focus on as surgeons. Figure 1 shows that the symptoms that concerned the patients are ones which we normally take for granted in the postoperative period: pain, swelling, discoloration and stiffness.

Figure 1. Classification of Patient Concerns
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One third of all concerns could be classified under six headings (Table 3)

Table 3. The Most Common Subjects for Concern Among Fracture Patients on MyBrokenLeg

Topic

Number

Hardware removal

Swelling

How long does it hurt?

Rehabilitation questions

Pain management

Stiffness

13

9

8

8

7

6

The study concluded that there is a mismatch between the surgeons' ideas of what patient information should be, and the patients' self perceived information needs. We tend to offer a description of the pathological process, the procedures involved, the risks, complications and benefits. In short we inform patients as if they are pupils. Based on this study, the patients' needs are to be reassured, not taught, on practical and personal subjects to do with symptomatology. Further study of such sites should allow us to improve the match between the information we supply and the information the patients need. It may be the case that the patients were already sufficiently informed by their orthopaedic surgeons about their condition and its treatment. The unmet information needs were in the arena of reassurance and explanation of postoperative symptoms.

In the light of this, the content coverage suggested by Clough & Oliver (Table 2) should be expanded to include postoperative symptomatology and patient information resources should ideally have a method of feedback and frequently asked questions' - genuine ones that patients actually ask. Amongst 335000 pages, you might think there would be many that fulfilled these criteria but I would seriously doubt it. The way to excellence in patient education is wide open.

The nature of the search engines and the Internet means that patients are likely to find erroneous and misleading information, whereas much of the patient information posted by orthopaedic surgeons is incomplete in our terms, and off target from the patient point of view. If we do not post our own pages, our response should be to find patient information sites that we trust and direct our patients to them, while remaining available to reassure them about their symptomatology. The more you study patient information on the Internet the better the human touch seems.

References
1) Clough J.F.M., Oliver C.W. Orthopaedics, networks and computers J Bone Joint Surg Br. 2002 May;84(4):481-5.

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