Transitions & Perspectives Ltd
Dr Michael Gordy
23, chemin de la Pièce
01170 Crozet, France
One of the distinguishing features of the Health on the Net Foundation is its concern with the intangible values important to good health care, most notably the value of social support in prevention, recovery and cure rates. This concern has required a shift in the approach taken to the relationship between communications and medicine.
The way this relationship has traditionally been treated is by recounting the possibilities made available by modern communications technology for providing medical treatment at a distance and for sharing knowledge world-wide. People usually begin with a discussion of the miracles of technology and approached health care as a potential realm of activity for the great electronic messiah.
The Health on the Net Foundation, on the other hand, starts with some medical and social needs, needs of which many in the medical profession are already aware independently of communications technology. Only after these needs are addressed can one move on to a discussion of how the internet might provide some tools for responding to these needs in a novel and effective way. In short, the strategy of the Foundation is to begin with the problems and search for the tools rather than begin with the tools and search for the problems.
There are two general aspects to the health care problems we'd like to consider briefly here: financial and medical. The most important in a human sense is the medical, so let's begin with that.
Decades ago doctors and other health care professionals began to be concerned about the effects of social support on cure rates, recovery rates and prevention amongst their patients. Study after study was undertaken, first by what were then considered fringe groups of researchers, but eventually by medical sociologists and physicians at the most prestigious of mainstream institutions. The view that social support has a direct correlation with medical success ceased to be seen as a radical position, an unsurprising result given that most practising physicians have experienced its reality throughout their working lives.
Because the question of social support is real, research into its effects has neither diminished nor has discussion of it proven to be merely an intellectual fad. Recent studies, in fact, have refined and focused research techniques to the point where extremely precise empirical evidence can be marshalled around the issue. Before proceeding any further it would be useful to have a short look at several of these studies, just as examples of the kind of work that is currently being done.
The first set of studies concerns recovery from stroke. One focuses on the impact of social support in general on the outcome of a first stroke, while the other measures the varied impact of different types of social support on stroke recovery. The first is entitled : The Impact of Social Support on Outcome in First Stroke  and was undertaken by physicians and social science researchers at Yale University School of Medicine, Duke University School of Medicine and Health Service Research Field Program, The Veterans Administration Medical Centre at Durham, North Carolina, and The University of North Carolina School of Nursing. The second is entitled: The Quality and Quantity of Social Support: Stroke Recovery as Psychosocial Transition  and was achieved by researchers at the Department of Epidemiology and Public Health at Yale University School of Medicine and at Duke University Department of Sociology.
In each study social support is defined as "the sum of the social, emotional and instrumental exchanges with which the individual is involved having the subjective consequence that an individual sees him or herself as an object of continuing value in the eyes of significant others". Or in other words, social support is taken to mean the sum of all the relationships that make a person feel as if he matters to the people who matter to him.
In the first study, forty-six surviving patients were followed for six months after their strokes. Recovery was evaluated by using repeated measures of functional status as indicated by the widely-accepted Barthel index of the activities of daily living. The social support perceived by the patients was measured at one, three and six months after the onset of the stroke. Significant differences were found across the spectrum of levels of social support, with a marked three-way interaction between stroke severity, social support and outcome. For instance, patients with the most severe strokes and greatest amount of social support had a 65% better outcome in terms of functionality as measured by the Barthel Index. The study concluded that high levels of social support were associated with faster and more extensive recovery of function after a stroke, and that social support may be an important prognostic factor in recovery. It also speculated that socially-isolated patients may be at particular risk for a poor outcome.
The second study of stroke patients attempted to view the recovery process as a psycho-social transition involving abrupt and relatively permanent changes in life patterns occurring over a short period of time. In other words, it recognised explicitly that stroke disrupts peoples' lives in ways that touch their basic sense of what their lives are about, requiring behavioural and emotional changes that strain the limits of peoples' adaptive capabilities.
From that perspective the researchers investigated the differential effects of three kinds of social support on adaptation and recovery outcomes: emotional, instrumental and informational support, with the former being the most dependent on the patient's own perceptions. Forty-four patients were followed for six months after stroke, with all the appropriate controls and research techniques in place.
What distinguishes this study from others of its type is its determination to learn the answers to the following questions: What makes social interaction supportive, which dimensions of social support are most important, and when during the psycho-social transition are different types of support most beneficial? Unfortunately, this is not the place where we can go into all the details of what the study found.
What we can consider here, however, is the finding that while all three types of social support were shown to be significantly related to a patient's recovery of functional capacity, substantial differences were found in the nature of those effects. Interestingly, patients who had the most severe strokes but the greatest level of emotional support had the most dramatic improvement, while instrumental support, i.e., re-education, material intervention, etc., was most closely associated with improvements if it was provided in moderate amounts. Too much instrumental support tended to undermine the patient's desire and ability to learn how to do things for himself. Informational support, of course, was found to be most effective if the severity of the stroke was relatively low.
In both of these studies it was found that social support of the emotional variety, the kind that comes from a sense of social connectedness and encouragement, was always beneficial. In addition, it could not be overdone; the more support, the better the outcome.
The question arises of whether these findings are generalisable beyond stroke victims, and if so, how? Let's look at one more study, this time concerned with survival after myocardial infarction. It was undertaken, again, by medical and social researchers at the Yale University School of Medicine's Department of Epidemiology and Public Health, although the leader of the team has since moved to a chair at the Harvard School of Public Health.
The title of the study is Emotional Support and Survival after Myocardial Infarction , and it took place among a population of the elderly in New Haven, Connecticut between 1982 and 1988. This elderly population, numbering 2806 persons, was participating in a long-term study of ageing. The members of the group selected for the study we're looking at were those hospitalised for myocardial infarction during the 1982-88 period. There were 194 of them, including 100 men and 94 women.
While numerous studies exist showing retrospectively the effects of psychosocial factors on recovery from myocardial infarction, this study is one of the first to measure emotional support prospectively, that is, before the onset of the attack. This was possible because interviewers in the larger study on ageing had gathered social and psychological data from all the participants on a regular basis, so the researchers doing the study we're considering were able to use information obtained during interviews undertaken most closely before the infarction.
Emotional support was measured by responses to the following questions: "Can you count on anyone to provide you with emotional support such as talking over problems or helping you make difficult decisions? If so, who are the persons providing that support?" The researchers were also interested in determining the person's social network, for instance his or her marital status, contact with friends and relatives, membership in religious organisations and activities in voluntary groups.
The study controlled for the severity of the infarction, whether or not it was a first attack, and for comorbidity factors such as diabetes, cerebrovascular accident, chronic renal failure, obstructive pulmonary disease, congestive heart failure, etc. It also took note of personal behaviour patterns such as smoking, alcohol consumption and obesity. In other words, every attempt was made to abstract the effects of emotional support from other contributing factors to survival rate.
Without going too far into the statistical evaluation or any of the details of the study, I'd like to point out that the results indicated that the level of emotional support, here closely identified with a sense of social connectedness, reported by the elderly before their myocardial infarction, was strongly associated with subsequent risk of death during the year following the attack. 38% of patients having reported no emotional support died while they were in hospital compared with 12% of those reporting two or more sources of support. By the end of one year, 55% of those reporting no support had died compared with 27% of those with two or more sources.
Now these rather superficial accounts of the results of scientific studies are not meant to prove anything. Yet they do indicate that there are valid reasons for taking seriously the issues raised earlier, namely, that there is an important relationship between patients' sense of social connectedness and support and the rate of medical success. I'm sure this perception is not new.
What is new, however, is the possibility of responding to this issue on a much wider and deeper scale than previously. The rapid development of telecommunications and computer technology, driven in large part by investments from the financial community, have enabled us to think about creating networks of social support unconstrained by distance. This is a superb set of tools, and if it is used by people who understand the problems they are trying to resolve it can facilitate a breakthrough in improving prognoses in a variety of medical situations.
The opportunity, for example, for a patient to consult with someone about a particular decision associated with his or her life after a heart attack, without having to leave home or have a personal visit, can provide the kind of ongoing reassurance and encouragement that contributes to faster and fuller recovery. Likewise, the possibility of establishing contact on-line with others in similar medical situations, whether inside the hospital or out, can offer priceless psychological support and an escape from isolation for those patients lacking the usual sources of encouragement and understanding.
Or if, as was indicated by the last study we considered, social support before a medical problem arises has an effect on what happens afterwards, would it not be worthwhile to investigate the possibility of setting up support networks on-line for people who might be at risk? Creating virtual communities of elderly persons might make a significant contribution not only to recovery from disease but to prevention as well.
The issue of prevention leads us into the area of finance. If social support contributes to faster and more thorough recovery from illness, might it not also contribute to helping people stay well in the first place? And if so, might this not contribute to alleviating some of the burden on health care resources?
This brings up an interesting issue, one that has only anecdotal support so far. There are many in the health care profession who believe that a fairly significant proportion of visits to a physician or hospital emergency room arise from a need for social contact or from medical worries based on lack of information. In many of these cases a physician is not the person best suited to respond to the genuine needs being expressed. Social workers or medical educators might have a more appropriate response.
Might it not make sense to create an on-line screening process to help distinguish medical problems from broader social or informational needs? Certainly the demands on physicians' time and congestion in hospital waiting rooms could be diminished through such a program, and it could be set up between large groups of participating hospitals and other health care centres. Staffing such a program would use far fewer resources than at present, and the net effect might be to help people become more conscious of where their real needs lie. This awareness might result in people taking more responsibility in deciding when they need to visit a doctor or hospital.
As a part of this kind of program, physicians and other health care workers could train their patients to use the internet to gather relevant information and then bring it to the screening process. This would turn patients into amateur medical researchers without running all the risks associated with the fact that `a little knowledge is a dangerous thing'.
Much of this may seem very speculative, but it indicates a few of the directions in which reflection on the nature of health care might go in the context of possibilities opened up by the internet and associated networking capabilities. It also rests on a certain assumption about human beings.
That assumption is that individuals can only be understood as part of a social whole, a social nexus within which they define themselves and are defined as well. Treating an individual without fundamental reference to this social connectedness means remaining blind to factors that determine what happens to him or her as an individual, both within and outside the medical context.
The predominant industrial model used for thinking about virtually all activities in modern society treats this social nexus as merely an aggregation of component parts, which is why concern with the effects of social support on medical success at first seemed so radical. While many health care professionals had an inkling that this conceptual approach was inadequate, their training made it difficult for them to ask the proper questions. Besides, it is always a bit scary to go up against the prevailing wisdom, particularly when it seems to have provided such important benefits. Nobody in his or her right mind would want to deny the improvements in health care brought about by industrialisation. Pointing out the limitations of the industrial perspective does not necessarily lead to popularity.
Inevitably, however, the accelerating disintegration of traditional industrial society and the emergence of knowledge-based and communications-based enterprise has brought with it some serious questioning of the categories of meaning associated with industrialisation. This has had a salutary effect on thinking about health care delivery and medical treatment, opening up a much deeper appreciation of the social context of the medical system. An understanding of what might be called the `intangible' aspects of health care provision has become much more profound with the rising importance of intangible values like communication and knowledge in the wider economy.
The internet must therefore be seen as a tool for deepening this understanding and for exploring new ways of addressing the intangible social needs associated with medical care. It is by no means a replacement for the reflection and exploration, but it can enhance their scope and range immensely.
One of the reasons why the internet may prove to be a very good tool is that its value is intangible. Communication cannot be seen or touched, but nobody can deny its existence. If, as we believe, intangible values like social support have a significant role to play in health care as a whole, then intangible values like enhanced communication of the sort we've gestured at become extremely important. Wide-ranging exploration and experimentation concerning the relationship between communication, social support and improved medical care are things the internet affords, and The Health on the Net Foundation exists to facilitate and promote these activities.
Dr Michael Gordy
1st July 1996,
 Glass, Thomas A., PhD and Maddox, George L., PhD, The Quality and Quantity of Social Support: Stroke Recovery as Psycho-Social Transition, in SOCIAL SCIENCE MEDICINE, vol. 34, no 11, 1992, pp 1249-1261
 Berkman, Lisa F., PhD; Leo-Summers, Linda,
MPH; Horowitz, Ralph I., MD,
Emotional Support and Survival after
Myocardial Infarction, in ANNALS OF INTERNAL
MEDICINE, vol. 117, no 12, 15 December 1992, pp 1003-1009
Emotional Support and Survival after Myocardial Infarction, in ANNALS OF INTERNAL MEDICINE, vol. 117, no 12, 15 December 1992, pp 1003-1009
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