The dispositional trust is measured by the following statements. Respondent can give a score between 0 and 100:
|We live in uncertain times||
|You can not be too careful in dealing with others.||
|I trust that social organizations keep my best interests at heart.||
|Faith in humanity is outdated.||
As seen from the above table, the scores lie around 50. In the interviews, the respondents were asked about this. These interviews revealed that some respondents did not know how to answer the questions, others suggest that the truth lies in the middle. The degree of self-confidence, on the other hand, is very high.
|I have much self-confidence||
Trust in others is measured by four statements. The respondent chooses the statement he identifies himself the most with:
|I trust no one||
|I do not trust anyone until they have proven they can be trusted||
|I trust others until they violate this trust||
|I trust others even though they make mistakes||
From these findings, it can be concluded that people who have a high degree of self-confidence are more likely to put trust in others. Respondents who gave a low score to self-confidence are more likely to trust no one until they have proven they can be trusted.
Mutual trust is measured by questions about how the relationship with the physician is experienced:
|How would you describe your relationship with your physician||
|I have no permanent physician||
To elaborate on this, respondents were again able to give a score between 0 and 100 to the following statements:
|My physician acts in my best interest.||
|My physician is difficult to reach.||
|My physician has informed me very well about the use of my medical implant.||
The above results show that all respondents who have one physician they see when they need to go to the hospital are satisfied with their doctor. Many patients have two doctors they see regularly. Six out of the nine patients with an ICD have a doctor for their heart condition and a doctor for checking the functioning of the ICD. Both insulin pump users also have two doctors they see regularly, an internist for the global periodic clinical check-ups, and a diabetes nurse that supports the patient by the learning process of dosing and administering the insulin with the aid of the insulin pump. In the interviews, the patients were asked if the given scores applied to both doctors. With one exception, this is the case. Although some patients indicated that their doctor is difficult to reach, this does not mean that they are dissatisfied with the rest of the counseling. Patients are in most cases very pleased with the support they receive. When patients talk negatively about a physician, it usually refers to the way a patient is treated by that physician. One respondent felt like he was treated like a child (after he had spoken to his doctor about this his physician adjusted his attitude). Another patient found the contact with his first physician too impersonal. He had the feeling that his doctor was mainly concerned with the ICD but forgot that there is also a person attached to it. For this reason, he switched to another physician. Changing physicians occurred in five out of the fourteen patients interviewed. The reasons varied: dissatisfaction with the contact, a physician who is retiring, but also the fact that, in some hospitals, a patient not always gets the same physician when they come for an appointment.
Physicians have in most cases a group of patients they see regularly. However, for doctors in training, this is not possible because they only work temporarily in a particular department. Both doctors and patients prefer regular contact, as it gives the possibility to build up a good relationship and to make clear agreements about the treatment. When patients are assigned to a different physician regularly, there is a greater risk of physicians working past each other. Furthermore, it is bothersome for patiënt to tell their story over and over again. The latter is a comment often said by respondents who have switched to another physician. In the interviews with the physicians, they were asked if their department conducted patient satisfaction surveys. In none of the interviews, this was the case. The ideas about the relationship with their patients partly stem from patient satisfaction surveys that are conducted in other departments in the same hospital or even in other hospitals. Changing physicians is seen as a signal that the patient isn’t satisfied with the treatment. It was notable that none of the physicians contacted these patients to learn about the underlying reason they changed physicians. When asked why they didn’t pay more attention to this, two physicians said that they don’t even notice if a patient doesn’t return and therefore can’t make an estimate of how often this occurs. Patients have to make an appointment themselves with the physician. Physicians don’t keep a track record of when a patient last visited.
Provision of information
If a patient qualifies for a RCMI, an interview is arranged unless the patient and physician already know each other. When a patient qualifies for a pacemaker or ICD, the information is provided by the cardiologist. In the case of diabetes, the patient is informed by both the internist and the diabetes nurse. In these interviews, physicians get to know the patient, do a physical checkup, explain the procedure, clarify the reason why the patient gets a RCMI, what, in case it’s relevant, they can expect of the operation and the pro and cons of a RCMI. The family, like the spouse and children, are often invited to these interviews too. In most cases, the patient can choose between several types of RCMI’s. Many patients feel overwhelmed by all the information after the meeting. They notice, for example, they forgot to ask certain questions and that they weren’t able to process all the information. Because of this, hospitals often organize extra information sessions. Using a presentation, all themes that were discussed during the interview are repeated more broadly, and the patient is given the chance to ask questions. Patients often express that they appreciate these information sessions. Furthermore, patients receive information leaflets so that they can read about certain subjects in their own time when they’re home. These brochures also contain suggestions for websites patients can visit. The websites that are visited most often are the STIN, het diabetesforum, de hartstichting, and the websites of manufacturers.
In the information sessions about medical implants with the physician, the risks of the wireless applications are not discussed. Also, the leaflets that are handed out to patients to take home do not mention the risks of the wireless applications. The risks that are mentioned to patients have to do with equipment that generates magnetic fields and certain activities that are now allowed anymore. Examples of magnetic fields are the gates at the airport, the use of the mobile phone (the phone must be held on the right ear in case the medical implant is located on the left side of the body), and scanning devices. In the information leaflet, the colors green, orange, and red indicate which distance a patient should keep from such devices. Activities like driving a vehicle for work, bungee jumping and parachuting can no longer be done if someone has an ICD or pacemaker because the leads could shoot out of the heart in case of sudden shocks in the body. The most important risks for patients with an insulin pump is that they administer wrong values in the pump or that the tube that connects the pump to their body gets stuck behind something.
Home-monitoring systems are easy to use as patients only have to insert the plug into a socket and push the on-button. The manuals that come with the home-monitoring systems are very thin and contain more pictures than text. The wireless connection of the home-monitoring systems usually runs via a landline or mobile phone line because this is easy to install. Of the interviewed patients with an ICD, 33% have a home-monitoring system, in the department where the interviewed cardiologist works, approximately 50% of the patients have a home-monitoring system. The cardiologist expects that in the future everyone with an ICD will have a home-monitoring system.
The conditions to qualify for a home-monitoring system vary. Reasons for this are cuts in hospitals, as well as lack of expertise regarding home-monitoring systems in small-scale hospitals. The mentioned conditions for getting a home-monitoring system are problems with the leads, living far away from the hospital, or in case of a complex heart condition. Not every patient wants a home-monitoring system. Some think it’s a scary idea to be monitored all the time and others do not find it necessary.
Insulin pumps are more complicated to use than home-monitoring systems. With an insulin pump, it’s not sufficient when the device is connected. Patients with an insulin pump should be able to set some functions themselves. An example of a function is the basal state; this is the standard amount of insulin injected automatically throughout the day. Additionally, insulin must be added to each meal and depends on how many carbohydrates the dish contains. These values must be entered manually into the insulin pump, thus increasing the chance of errors. Occasionally patients do not set the values in the pump correctly and end up in severe hypo or hyper. These patients are usually recommended to return to manually administering insulin. These risks make it more difficult for people with diabetes to qualify for an insulin pump than it is for patients with a pacemaker or ICD to be eligible for a home-monitoring system. Patients that want an insulin pump must meet a minimum of technical knowledge. They, for example, must be able to enter the date and time manually. For some elderly patients, this may be too big of a challenge. The way patients learn to handle an insulin pump differs per hospital. Some hospitals organize a four-day course, other hospitals let an employee of the manufacturer of the insulin pump explain. Doctors note that patients appreciate it when it is shown how the insulin pump should be adjusted. This way, they do not have to look everything up in the manual. The patients with an insulin pump call the manual “unreadable,” it is a thick booklet of more than 300 pages with a warning every few sentences. After the patient is informed, they can practice with the insulin pump at home for a week using a saline solution. Because of the saline, patients do not risk a hyper or hypo in case a wrong dose is accidentally administered. If everything went well during the week, the patient receives insulin for the pump, and the pump can be put into service.
Although an insulin pump is harder to use than a home-monitoring system, the data is easier to read. Many patients with a pacemaker or ICD feel the need to see the data, that is stored by their medical implant, via an internet page. At the moment, only patients with an insulin pump have online access to their data. I have asked about this, and the cardiologist, the pacemaker technician, and the producer think that disclosing this data to patients with an ICD or pacemaker will not benefit them but instead cause fears and uncertainties. An example that was mentioned is the finding of a cardiac arrhythmias disorder. This anomaly does not always have to be serious, in many cases the heart restores itself. However, if a patient reads that he has had a cardiac arrhythmia, although it is noted that it is not relevant, the patient may panic anyway. In the current system for pacemakers and ICDs, not receiving a message is seen as a good thing. Patients often get a check-up once or twice a year and may receive an overview of some data that is stored by the pacemaker or ICD. According to the physicians, it is more important for the patient to know whether the ICD functions properly and whether there have been rhythm disorders in the heart.
Trust in the expertise of the physician
This idea that patients are satisfied with their physician is strengthened when looking at the extent to which respondents have confidence in their physician’s knowledge:
|I trust that the information provided by my physician about my medical implant is correct.||
|I think my doctor is well aware of the latest developments regarding my medical implant.||
In most cases, the expertise of physicians is highly appreciated. For example, cardiologists must annually obtain their training points. They do this by attending congresses. Also, cardiologists can get a license for implanting pacemakers and ICDs. A minimum of implants per year is required for obtaining and retaining this license. Internists and diabetes nurses hold diabetes discussions regularly in which the latest developments are addressed. Also, doctors read medical journals through the professional association, maintain contact with colleagues and find information on the Internet to keep up-to-date with the latest developments. Pages that are frequently visited are the websites of manufacturers, the STIN, medical articles via PubMed, and the diabetes forum. Some doctors work with patient associations. This partnership results in that physicians are more motivated to be aware of the latest developments. Within patient organizations, there is close contact between producers, physicians, and patients, also, the Internet is searched for the most recent developments that are posted on the website and in the STIN journal.
From the patient’s point of view, there is great confidence that physicians have their best interest at heart. This idea is based on the assumption that physicians do not earn extra money if they prescribe a patient a medical implant, but also the feeling that the physician listens to them and tries to answer the questions that patients have the best they can. Patients themselves may ask their physician about the risk that their RCMI can get hacked and physicians strive to reassure the patient. A physician had talked to colleagues about this, and they said that he should not worry because it is almost impossible. Also, he had read an American article that stated that it is not possible to hack RCMIs.
Almost all patients, but one, are satisfied with both their physicians. That one patient is more pleased with his internist than with his diabetes nurse. According to him, the diabetes nurse is insufficiently aware of the latest developments in insulin pump technology and is therefore unable to answer his questions accurately. Interestingly, the other patient with an insulin pump has a diabetes nurse who is well aware of the latest developments. This diabetes nurse tries all the new models of insulin pumps out on herself for a week and uses a saline solution instead of insulin since she does not have diabetes. As a result, she can better inform her patients. This situation suggests that there may be major differences in the expertise of doctors.
Trust in the manufacturer
For a broader picture of institutional trust, we also look at the degree of trust in the manufacturer and the degree of trust in the medical implant:
|The manufacturer handles the safety risks of my medical implant responsibly.||
|Should the manufacturer discover new security risks, I trust that I am informed about this.||
|I consider the chance small that my medical implant does not work properly.||
Here too, respondents maintain a high degree of institutional trust. The trust of patients in manufacturers of RCMI’s varies. Three patients argue that, because of the strict US surveillance, new models are being tested outside of America to circumvent rigorous oversight. A cardiologist said that this image is not correct and that the criteria in Europe are also strict. However, it was acknowledged that the standards in America are somewhat more stringent, but that the rules in Europe are increasingly tightened. Many doctors find that the testing procedures are too severe and delay progress unnecessarily. These doctors would like to see the test criteria slightly relaxed to increase the speed of development. The interviews with the doctors and the manufacturer imply that the test criteria are rigorous. It takes on average five years before a new model is placed on the market because new models must first be subjected to all kinds of tests and evaluations. However, it was acknowledged that the standards in America are somewhat more stringent, but that the rules in Europe are increasingly tightened. Many doctors find that the testing procedures are too severe and delay progress unnecessarily. These doctors would like to see the test criteria slightly relaxed to increase the speed of development. The interviews with the doctors and the manufacturer imply that the test criteria are rigorous. It takes on average five years before a new model is placed on the market because new models must first be subjected to all kinds of tests and evaluations. I asked the doctors working in the cardiology department about this. They stated that such a thing could never be discovered from the patients’ perspective because numbers of patients first have to carry the medical implant before it is noticeable that there are defects. Doctors are required to register any flaws. When several hospitals identify a problem with a medical implant, policies must be developed in collaboration with the manufacturer. The patient is not involved in this process. However, the implementation of the policy in question does not always take place properly. When it became known last year that certain leads are very vulnerable, the media did not indicate the brand of these leads. This negligence caused unnecessary fear in a large group of patients with a pacemaker or ICD.
All doctors stated they have direct contact with the manufacturer. The hospital’s close contracts with manufacturers and are invited by them to test new technologies. The intensity of the contract varies. In a department of cardiology, there is always someone from the technical support of the relevant manufacturer directly involved with the ICD implants. Implanting pacemakers does not need any technical assistance because it is less complex. This procedure is not performed in every cardiology department. In other hospitals, new models are only presented by the manufacturer, but they are not involved with every ICD that is implanted.
Physicians have the greatest confidence that manufacturers act responsibly when it comes to the safety risks of medical implants. Manufacturers come across as very reliable, and Physicians have good experiences with the quality of the delivered medical implants. The ICD nurse told about a patient who had a home-monitoring system but didn’t trust the device entirely. An employee of the relevant manufacturer talked to him and took the time to explain everything about the pros and cons of the device. For the ICD nurse, this indicates that the manufacturer takes fears and doubts very seriously. For extra oversight, an independent committee, affiliated with the Dutch Association for Cardiology, is committed to the safety and quality of pacemakers and ICDs. These measures are seen as an additional check, but the interviewed manufacturer said they would also inform cardiologists by themselves when problems occur. Examples of problems that were mentioned are fragile leads and batteries that run empty too quickly. According to physicians, it would also be in the best interest of manufacturers themselves to put a good product on the market. If manufacturers give the impression that they don’t care about the quality of their products, this would only work to their disadvantage. For them, it would be a big problem if there are RCMIs that do not function properly. This can cost manufacturers a lot of money to pay for all the damage and give them a bad name. In the worst-case scenario, a scandal can cause a company to go bankrupt. Also, manufacturers must compete with other businesses that make medical implants. The pressure exerted on manufacturers gives physicians a high level of confidence that a good and safe product is placed on the market.
In this chapter, the three stages of trust are discussed in order to gain a better understanding of how patients place trust in RCMIs and how the relationships between patients, physicians, manufacturers, and security experts influence patient perception. The next chapter will look at the influence of reflexive modernization. The first part focuses on the patient and the technical knowledge that patients have. This is measured by looking at whether patients are well aware of the functioning of their RCMI and the extent to which patients are concerned with securing their computers. The other groups of respondents are also discussed. Themes here are the extent to which respondents are aware of the news that RCMIs can be hacked, ideas about the safety and possible risks of RCMIs, and what these ideas are based on.