THE CONSENSUS ON WHAT IS NEEDED

SURELY THE NET ALREADY PROVIDES THE MEDICAL IMFORMATION PROFESSIONALS AND CONSUMERS WANT? WHY IS THERE A PROBLEM?

Doctors and patients
Since the late eighties there has been a dramatic shift to ‘active patient’ involvement in medical management. This was driven by evolving cultural issues indicated above but also by the presumed availability of sophisticated health information on the net. Time pressed doctors wary of litigation have been only too pleased to shift the burden of ever more complex decision making to patients - even to very unwilling claimants of this newfound responsibility. The mainstream patient at the turn of the millennium is now the ‘active’ patient.

Community health information users are now far from an homogenous group and consist of three very different sub groups with utterly different requirements.

• Those interested in infotainment (grapefruit diets,‘10 ways to ward off cancer’ articles)
• Those interested in general background ‘Readers Digest’ or home encyclopedia level articles about health issues.
• Those who need a complete up to the minute understanding of a topic often for urgent personal reasons. They have requirements vastly more sophisticated than the above two groups - in fact they require a layman’s equivalent of the best specialist understanding.

• In the beginning
  
  

  When the net entered the community mainstream in the nineties, an anythinghealth.com gold rush mentality pervaded.
  
  The pre-existing body of community level health information was distributed over myriad dictionaries, magazines and home encyclopedias like the ‘Rush-Presbyterian-St. Luke’s-Medical Center Encyclopedia’.
  
  Community databases were generated by collecting thousands of these articles, filtering the worst of them and blessing the remainder with the wand of ‘high level editorial oversight.’ These articles are usually very dated - often up to five years old. They were not written by doctors and were never intended to function as other than background information. Listing the professors of medicine on the site editorial committee meant only that these articles were suitable as partial background material and hopefully were free of the grossest errors. The implicit assumption was that a doctor somewhere was providing all the important decision making information.
  
  As the net health portals condensed into the mega sites the same material was simply aggregated into indexed super collections of articles. WebMD aggregated many such sites. Community health net site design was simply the sum of many short term, narrow focus, corporate decisions. The commercial pressure was simply to get a site up as fast as possible - the momentum behind the process was enormous and billions of dollars were at stake.
  

  
  
• But the user base was rapidly changing in its requirements
  
  

  All the while the ground was shifting radically. No one paid attention to the fact that the majority community user’s needs were also evolving very quickly and in a way not paralleled by the net sites. The net sites were built around a model that was somewhat out of touch with trends in the in the late eighties but by the year 2000 it was almost irrelevant to mainstream need. Community information seekers had developed very sophisticated requirements. Few were reading now just for background information and certainly not for info-tainment. Willingly and unwillingly the community was very frequently taking on the role of co-decision maker and often sole decision-maker concerning major health issues. This meant that the requisite community level information now needed to be equivalent to that of an up-to-the-minute specialist.
  
  The designers of health information net sites failed to focus on the end users with any degree of clarity. No one in the net health information business has ever set out to produce material, which explicitly responds to the real needs of user group 3 above. New community net site material is still produced entirely on the ‘passive patient’ model.
  

  
  
• The user response
  
  

  Users have responded by simply attempting to press the Internet into the service of their new requirement. There are two large hurdles.
  
  The first is that this ocean of general background community material varies enormously in quality. A Johns Hopkins/Ohio State University study showed that some 70% is just wrong or misleading. The Journal of the American Medical Association confirmed in a survey of the top six consumer sites in May 2001 what many previous reviews and surveys had found. Even as background information, the ‘best’ of the consumer sites have typically 40% error rates and even trying to stick to ‘quality sites’ is relatively little protection.
  
  The second and much larger hurdle is that the user has to go to the on-line medical journal research to upgrade this background material to the point where they can hopefully make meaningful decisions.
  
  Unfortunately accessing this material is technically very demanding and time consuming - it is a daunting task for most doctors unless they work in the area of special research to generate this level of understanding from the thousands of journals and the Internet search engines like Medline.
  
  The major community health information net sites are quickly passed over in the search process. People are then randomly sampling research material or trying to access this material through third party commentary in chat groups etc - a very risky process. The result is that the community is caught in this terrible bind - there is no going back to a ‘Marcus Welby golden age’ and the existing system is extremely difficult to manipulate to the new ends required.
  

  
  
• The outcome
  
  

  The outcome has been awful. Doctors hate patients turning up with great bundles of net articles and simply refuse to play editor to the material - for both good and bad reasons.
  Many review articles document the severe problems the community now experiences in this process. Surveys show that the vast majority of the ~50m users per month of net health information are there not there for info-tainment or simply for general backgrounding. They are in need of an up-to-the-minute understanding of serious health problems often for urgent personal reasons. There is a very high rate of community dissatisfaction with the process but the cultural trend is inexorable and accelerating.
  

Modern medicine is a mere 40 years old. It is only since the sixties that we have had moderately successful treatments for many of the major diseases. The presumed mechanism by which doctors do keep up to date is unchanged in principle from fifty or even a hundred years ago. Doctors have a store of clinical information in memory which they update by taking CME courses, reading the journals, talking with colleagues and attending conferences. There have been dramatic changes in the whole relationship of doctors to medical information in the last forty years. Few of them have been well documented but the most commonly understood is the issue of the volume of information.

The volume of medical information

This period has been characterized by a gradual shift towards an exponential rate of growth of medical information and the doubling rate is now 2-3 years. Some 1600 significant medical articles per day are being published. Some fields of medicine and surgery are moving so swiftly that being a few months behind the research can be very significant

Multi-faceted approach to the diseases

With the increasing sophistication of medicine, many diseases are now distributed over a clinical spectrum much broader than the traditional specialist categories. In particular medicine and surgery are closely intertwined in the treatment of many disorders. The proliferation of new treatments means many diseases have fast evolving alternative management strands rather than simply a single treatment option. The management strands often intertwine previously discrete areas like internal medicine, surgery, radiology, pharmacology etc and areas that are newly emerging like prevention and screening. Preventive and screening approaches are now also well-developed areas of clinical practice and primary care has a defining contribution.

Interconnected medicine raises the knowledge bar for everyone

Increasingly clinical knowledge areas are interrelated and interconnected.
The rise of interconnected medicine means that a doctor now needs to be familiar with the very many ways that both closely related and seemingly disparate areas of medicine impinge on their individual field. So the domain of knowledge is no longer defined largely by the practitioner’s field of operation but by the very much larger field of medical knowledge that now interacts with a practitioner’s own working field. Physicians need to know about current surgical options and vice versa. Generalists like those in emergency rooms need to know about advanced diagnostic, medical and surgical treatment options so that patients can be quickly triaged and appropriately pre-treated.
The arena of necessary shared clinical knowledge now includes an understanding of the clinical components of specialist knowledge - what the specialist can do without the detail of how that is achieved. The challenge is to communicate this level of information whilst constraining the total volume of information needing to be taken in.
At a time when command of their own medical fields is very difficult the knowledge bar has been raised further to the level where a working knowledge of many other fields is necessary knowledge. The boundary of an individual’s own clinical activity no longer defines the boundary of necessary clinical knowledge for that activity.
For a primary care doctor, hospital based generalist or a specialist to be clinically capable in their own domain a good grasp of the state of clinical development in other fields both close and distantly related is often now necessary.

A dramatic shift in the relative use of clinical information resources

The following table shows how the different categories of clinical information are layered, how they function and how there is a major shift from the broader older resources to the narrower faster changing resources.

	Level 1 INDIVIDUAL AUTHOR RESEARCH ARTICLES	Journals E.G. Use of a particular drug for treating blood pressure
	Level 2 INDIVIDUAL AUTHOR RESEARCH REVIEWS	Journals E.G. The pharmacological treatment of blood pressure
	Level 3 INSTITUTIONAL TOPIC REVIEWS	Medical Colleges, Research Centers, hospitals E.G. The pharmacological treatment of blood pressure
	Level 4 LARGE MULTI-CENTER TRIALS	Major Research Centers E.G. The treatment of blood pressure and stroke prevention
	Level 5 EVIDENCE BASED MEDICINE COLLECTIONS	E.G. Cochrane Collection, EBM net site. Collections of summaries of the best evidence from sub categories within many different within topics E.G. The use of beta blockers in heart disease
	Level 6 TEXTS	Medical, Surgical, Primary Care, Screening and Prevention across a broad range of disease topics

The above Table illustrates the structure of the clinical resources available to a doctor. There is an approximate gradation in the table.
In general at the top (Level 1) is the narrowest and most recent information and at the bottom is the broadest and oldest. Approximate as it is, the table is useful in visualizing a very important trend in information resource usage. Forty years ago the bulk of the important clinical information was derived from Level 6 - the medical texts. The now near exponential rate of increase in research particularly in diagnostics and treatment has shifted the preponderance of important clinical information to the upper Levels, chiefly to Level 1, the zone of some 1600 new articles per day. Medicine continues to centrally depend on an evolving core of gold standard research for its underpinnings – the multi-center clinical trials, the large pooled studies, the considered evaluation of the major committees of the colleges and institutions.
The traditional standard of clinical research remains the multi-centre clinical trial, that is – Level 4. But those trials require treatment and diagnostic regimes to be stable for such an extended period (some years) and they then take years for the trials to be conducted.
The pace of research means that the proportion of much more recent large and smaller scale studies to these landmark studies has increased enormously. Moreover this fast paced research is often in critical areas like new or alternative treatments for major problems. It is often not feasible to wait for more scientifically secure major supporting research. Clinical decisions must often be made now on ‘softer’ less scientifically ideal grounds. This development trend means that the evaluation of very recent research both large and small scale is an increasingly critical component of medical updating.
As a consequence an increasingly important role for the clinician is making a best judgement call based on limited data in critical fast changing areas. For example a small study showing modest success for a new treatment of an otherwise lethal disease is very important and the clinical decision cannot wait for the long term trials to be completed, if they ever are... Rapid development of new diagnostic techniques and multiple alternative treatments in particular means that a large and inevitably increasing proportion of underpinning clinical research is now in this category. Where there are new potential treatments for previously untreatable diseases or more usually significantly better alternatives to the current treatment options many decisions now have to be made on the basis of less than the gold standard ideals of scientific evidence. At the moment this segment is handled in a completely ad hoc fashion. Currently a very large quantity of important information is either ignored, or taken on naively or handled in isolation with varying degrees of skill. This shift to a clinical emphasis on the most recent research and the need for special evaluation skills has occurred of course at the same time as the volume of material has exploded.