Bridge over troubled water

From patients' experience to clinical reality

by Dirk Huisman, SKIM Analytical Healthcare / Rotterdam/EU.

Patients play various roles and their impact on healthcare decisions and healthcare consumption differs per indication, per market, per situation and per type of person. Across the markets the role of the patients is changing from complete dependence to participation and even decision making.

In parallel with the empowerment of the patients the interest of the clinicians in the patients has increased. When using patients as source of information to adapt and focus product development one should bear the following in mind:

Each patient is unique and each patient reacts from his/her specific frame of reference,based on his/her "unique" interpretation of the disease and of the treatment characte-ristics and consequences. This frame of reference often differs from the frame of reference and the interpretation by the clinicians.
When conducting patient interviews for product development it is better to start eliciting attributes that are of relevance to the patient and phrased in patient language than to follow the feature list provided by the clinicians which are primarily understandable to the physicians (only).
In an innovative market sensitivities to product characteristics might change rapidly. A preferred specification might soon become a hygiene factor or even a dissatisfier. Despite the rapidly changing sensitivity to product characteristics the sensitivities to the underlying benefits are stable over time.
To use patients as source of innovative information one should bear in mind that patients nowadays have access to a wealth of medical an clinical information. Therefore don't ask patients what product features (s)he is looking for, as the answer just might reflect your or your competitors marketing information and does not tell anything about the patient needs.
Patients across the various markets react both rational and emotional, but their overriding drive is "to live a normal life". Except for the hypochondriacs, patients don't want to be addressed and "treated" as patients.
Despite the empowerment of the patients the physicians still play a vital or relevant role in the prescription or product selection process. When prescribing physicians follow a blueprint or implicit patient segmentation. However this segmentation hardly ever corresponds or correlates with the segmentation based on a patient survey. To market new innovative products these segmentations should be aligned or synchronized.

There is a river of "bias" between the clinicians, involved in developing new products, and the patients. To innovate based on patient input it is essential to bridge this river. The need to build these bridges is emerging while almost all healthcare markets are becoming more consumer driven.

The role of the patient
Comparing the role of the patient and the physician - patient interaction over time it is obvious the role of the patient, the role of the physician and the interaction between them has been changing. Grosso modo from complete dependence to interactive participation and involved decision making.

The patient plays various roles and each role changes over time:

At the base of the health care system are the patients as consumers. They use and sometimes choose products and services, they interact and influence the decision makers in the layers above. The total market is the sum of the decisions taken by the different players at the different layers. The patient is certainly not the only player, but (s)he plays a vital role as user, decision maker, informer, influencer.

The role and the influence of the patient on the prescription or product selection decisions differs per situation. The different situations can be categorized and described along the "acute - chronic" and the "illness - wellness" dimensions. A patient in the acute illness situation is certainly more dependable than the patient in the chronic wellness situation, who is in full control. Anticipating the role of the patient it is essential to understand the situation.

Within the scope of the situation the impact of the patient on the decision differs per (type of) market. Markets can be defined along the "complexity of the intervention" dimension and along "the marketing strategy" dimension (ranging from specialist focused to consumer focused). Over time products and markets move along these dimensions in the direction of consumer focus and standardization.

The schizophrenia case(s)
To illustrate the role and changes in the role of the patient, a few cases in different product classes in which we have conducted a number of patient surveys will be described.

The first case regards anti-psychotics in Schizophrenia. The first patient study we conducted among schizophrenic patients was in 1992. We interviewed 60 schizophrenic patients spread over 3 countries. The patients ranged from moderate to severe patients, half of them were hospitalized. The reason to initiate the study was to get more insight in non compliance and therefore we had to provide insight in the patients' experience, perception and preference. In addition we wanted to compare and verify the product feature sensitivity as measured in a survey among psychiatrists. Interviews were conducted by nurses (in the hospital), by (market research) interviewers trained to conduct in-depth interviews and by the researchers / project director(s). The interviews were planned to last half an hour but on average lasted more than an hour. The interviews were partly open and partly computer-assisted using Adaptive Conjoint Analysis to measure stepwise the feature sensitivity.

It was (and still is) exiting and exhausting to interview this type of patient and we were amazed that these patients know everything about their disease including their full (ten years or less) drug history. Comparison of the claimed product experience with the medical records showed an amazing high fit. Schizophrenic patients are very well aware of the effects and side effects of the drugs they have used.

The comparison of the average feature sensitivity of the psychiatrists with the average feature sensitivity of the patients showed a similar pattern: the most important attributes were most important for both and they are all related to quality of life. To the patients the disease has reduced their quality of life seriously and in addition, according to the patients, the quality of life might have been reduced due to the side effects of the drugs used. At least for a part of the patients the reduction of quality of life paralleled with drug usage. The sensitivity to side effects, no matter whether the patient has experienced them or not, underlined the patient's feelings of being not normal and having lost control over themselves. The sensitivity to the side effects is primarily based on fear. In particular EPS (in patient terminology "wry neck and poking out of the tongue") and Tardive dyskinesia ("involuntarily making faces") were symbolic for being "not normal" and that is what they want to escape or avoid.

There was one feature about which the psychiatrists and the patients really differed: "anti depressant effect". For the patients depression is a serious element of their illness for which they seek a relief. For the psychia-trists in 1992 it was not a relevant characteristic of an anti-psychotic. In fact their sensitivities were conditioned by the classification of the drugs. Later surveys show that in this case psychiatrists are changing their opinion because there is a patient need, and most likely they react to marketing communication. For most other features their sensitivity or the importance of the feature has been stable over time.

From a methodological point of view there were a number of key learnings.
First of all the combination of structured and systematic measurement of feature sensitivity with the open interview is essential. In the open interviews the patients were not able to rank their priorities, they kept on switching so we would never have been able to specify their sensitivities and needs. However, without the open interviews we would not be able to understand the sensitivities.

Each patient is unique and reacts from his or her specific frame of reference and specific situation. It is essential always to trace why the patient is sensitive (or not) to a feature. For instance the utility scores showed that for a 27 year old male patient, single, "normal sexual functioning" was the second most important feature after no EPS (no wry neck or poking out of the tongue). For him normal sexual functioning meant "when entering a pub he was able to make contact with a girl like a normal guy of his age". Normal sexual functioning was just symbolic for being normal and being able to do what other people of your age do and it had nothing to do with enjoying sex.

In line with previous learning the third learning regarded the list of attributes. We used "physician attributes" and translated them into patient lang-uage. When conducting patient interviews it is better to start by eliciting attributes that are of relevance to the patients and conduct the trade-off using these attributes. In addition it is essential to identify / define the (living) situation of the respondent, as it explains a lot. Thirdly, avoid symbolic attributes which clinicians can not act upon.

In general it is very relevant to interview nurses (they can describe the patients needs and behaviour), but do not use them to interview patients. They are biased and leading (the transcript reflect the medical record). Trained interviewers were the best to conduct the interviews among these patients.

The market for anti psychotics (in schizophrenia) is only moving slowly along the scale to a greater impact of the patient on the decisions. In the past when we completed this survey there was already a lot of interaction between the patient and the physician, which is typical for the indication. Since 1992 the patient is better informed and as such does ask for new/other products. So in the interaction with the psychiatrists (s)he might be armed with more arguments and in the titration and the maintenance phase has a greater impact on the decision. However in the acute phase it is still mainly the psychiatrists who decides and the question is whether the role of the patient will grow in this situation as well.

The diabetes care case(s)
A market where the role and impact of the patient has changed significantly over time is the diabetes care market (blood glucose meter, insulin pen and other devices). Since 1989 we have been interviewing diabetics (N=800+, computer assisted, face to face interviews in the USA, Europe and Latin America (6 - 9 countries) to identify product market combinations with a high potential. A fundamental difference with the anti-psychotics market and with most pharmaceutical markets is the fact that the regulatory system for these products is different (faster). So innovations can be introduced in a relatively short period of time. Consequently the product category has adapted many innovations in the past 15 years.

In the surveys we originally used the similar methodology as in the anti psychotics survey described (Adaptive Conjoint Analysis + open questions for the benefits/reason why). The open question for the benefits have been structured to predefined benefits in later surveys. In addition in the last studies we also used discrete choice modeling (Choice-Based Conjoint). The way the attributes (features) have been presented has changed over time as well. When of relevance the features were visualized.

Key learnings:
In an innovative environment sensitivities to feature levels (attribute levels) change rapidly (a preferred level soon becomes a hygiene factor and later even a dissatisfier). Despite the rapidly changing sensitivities to attribute levels diabetics are consistently sensitive to the certain combination of features (offering the same benefits) and the sensitivity to the benefits underlying the features / attributes do only or at best change gradually.

Visualization (explanation) of the features has an impact on the sensitivities. But the impact can be positive as well as negative.


In an innovative market which is increasingly consumer driven the choice process is changing (from recommendation based, to benefit driven, to new model /concept oriented). The research methods used should be adapted or tuned to the decision making process or, in other words, the position of the market on the marketing strategy dimension partly determines which research methods to use.

Generalization of the cases
If we take the two cases as bench mark and plot them on the two maps defining the situation (acute-chronic, wellness-illness) and defining the market (complexity of intervention, marketing strategy) we can also plot the role of the patient in osteoporosis, gerd, oncology (BM), rheumatoid arthritis, erectile dysfunctioning and contraception. Based on a repetition of the surveys we might subjectively add some dynamics and see that all markets are becoming more or slightly more consumer driven. When interpreting the dynamics the direction is obvious everywhere but regarding the magnitude of the change one should be aware of significant country differences.

Apart from the general trend there is one overriding learning in almost all these studies: In the markets where patients were interviewed the drive of the patients is "to live a normal life". This underlying motivation determines the sensitivities. If we know that and we want to interview patients to innovate the focus should be on the specification of the benefits leading to the underlying goals in life of the patient. The patients are qualified to specify the benefits looked for. However don't ever ask them for the features looked for. Patients do not look for features. At best, they can suggest or identify which features link to the benefits looked for. When you realize that nowadays at least a part of the patients has access to a lot of information the answer to the question which features (s)he is looking for will reflect your and your competitors marketing communication.

When interviewing patients you should not forget that patients react context specific and in addition there are different segments / types of patients.
Physicians react "more rational" and when selecting a treatment often follow a blueprint or implicit patient seg-mentation. These segments seldom correspond with the segments found in patient interviews. Consequently in markets where the marketing strategy is partly consumer partly specialist driven one should try to link the results from the physician survey with the results from the patient survey or at least explain the differences, because both are essential in excepting the innovations.