BMJ  2003;326:1293-1295 (14 June), doi:10.1136/bmj.326.7402.1293

Good patient

I am a good patient, believe it or not

¹ Centre for Global eHealth Innovation, University Health Network and University of Toronto, Toronto, Canada M5G 2C4

What issues will the "good patient" of the future have to deal with?

Introduction

As clinicians and medical researchers, we have been taught and socialised to think, write, and act as physicians, but we, and our friends and families, have also been patients. We all try to be good patients. Our experiences as patients and our perceptions of those experiences have sometimes differed radically from what we would have expected from our medical perspectives. Our recent, real, and personal experiences illustrate the different ways in which we try to be "good patients." But what does that term really mean? In the past the good patient was passive and did not dare to challenge the judgment or recommendations of the physician. The good patient of the future might be the very opposite.

Our experiences Murray: My dentist's receptionist stopped me last week with a question as I was leaving her desk. "You used to be an obstetrician," she said, and explained her problem to me in uncomfortable detail. Her current obstetrician had suggested an operation to prevent miscarriage, and she was not confident that it would be safe or effective. To my suggestion that she request a second opinion, she responded that she couldn't even dream of doing so. Her doctor, she feared, would consider that as lack of respect for his opinion, and he might not continue to look after her. Carlos: The health professional who catheterised me after my recent appendectomy used the anaesthetic gel simply as lubricant, without waiting for the anaesthetic to take effect. Neither I nor my wife, who is also a doctor, openly questioned the neglect of this simple precaution, which converted an unpleasant procedure into an unnecessarily painful one. Why did we let that happen? Did we think that being passive and compliant made me a good patient? Or were we just too afraid to question the authority of our caregiver? Alejandro: At 18 months of age, my youngest daughter had a small lesion around her anus. Our family physician at the time quickly diagnosed it as a sexually transmitted disease and suggested a referral to a child abuse specialist. Horrified, my wife and I asked him to confirm the diagnosis, but he dismissed us, saying he was sure. On the internet we found over 50 articles that contradicted him. We brought this evidence back and expressed our deep dissatisfaction. A dermatologist reassessed the case thoroughly and proved that it was just a common wart.

The good patient of the future will: Bring lists of questions to the consultation and will expect answers in clear terms Know how involved they want to be in decisions about their health care; most will choose to share decisions with their healthcare providers Have free access to their health record on paper or through electronic means and will use it or share it as they see fit Request and receive a second opinion whenever they face a major diagnosis or decisions about treatment Use telephone, internet, and other forms of communication to complement personal visits with members of the healthcare team

A patient's wish list

We have chosen five of the many issues that patients might want to discuss with their doctors and for which the system should be prepared. For each of them, there is strong evidence that when current practices are challenged, patients get better outcomes. In most cases it would not take fancy technology, extra time, or increased costs to satisfy what patients "want." It would take only an assertive patient and a confident healthcare provider who is willing to listen.¹

I want all my important questions answered in terms that I can understand

Many patients leave the doctor's office or clinic with unanswered questions.^{2 3} On average doctors spend less than 10 minutes in each consultation⁴ and most tend to interrupt patients after less than half a minute.³ Surprisingly, when patients are given the opportunity to ask questions in their own way, actual consultation time does not increase. Patients are more satisfied and feel that they have spent more time with their doctors.^{5 6}

Making a list of important issues before the consultation helps to ensure that none is forgotten. When patients are enabled to ask the questions that are important to them and get answers, they feel more relaxed, more satisfied with the consultation, and are more likely to get better.^5-8

I want to determine how much I will participate in decisions about my health care

We all have the right, and the responsibility, to decide for ourselves how active a role we want to have in decisions about our health care. Some may want that role to be small ("the doctor knows best; I'd like her to decide for me"), while others may wish for almost complete autonomy ("give me the facts and I'll decide for myself"). Many want to be provided with the relevant information and to make decisions jointly with their healthcare providers. It is up to the patient to decide. The research evidence is clear: shared decision making enhances patients' self awareness and quality of life, improves their adherence to treatment plans, and leads to better health outcomes.^9-11

I want to see and share my entire health record if I choose

A personal, portable, up to date health record is an important adjunct to health care in a complex and mobile modern society. The health record is both a management tool for health professionals and a personal document for the patient. Most patients want the opportunity to see their health records^12-16 and have a moral right to do so. In many countries, including Britain and Canada, this is also a legal right. Patients who choose to see their records find it helpful and reassuring, even if the news is bad.¹² By reviewing the record, they can also clarify notes and correct misinformation.

Formal clinical trials on patients with cancer,^{17 18} with mental illness,¹⁹ in general medicine,¹⁶ and in antenatal care^{13 20} have found that when patients hold their own records they find it easier to communicate with health professionals and feel more satisfied and "in control." For the professional, perhaps surprisingly, there are savings in clerical time.¹³

I want the right to a second opinion, with no negative effects on my ongoing care

Particularly when facing a potentially life threatening disease, many patients want to have a second opinion, either to confirm the diagnosis or to choose the best treatment option. Requesting this, however, may not be easy. Patients may feel embarrassed or afraid to ask for a second opinion in case it weakens their relationship with their doctors or creates ill feelings. Doctors may feel hurt or offended that their opinion is questioned. Little is known about this or about the consequences on patients' ongoing care.

Third party payers (governments, insurers, health maintenance organisations) may consider second opinions to be an unnecessary waste of money and resources. Research suggests otherwise. When important decisions, such as the diagnosis of cancer or the need for major surgery are reassessed, a substantial number of discrepancies are found, many inadequate decisions are reversed, patient outcomes tend to improve, and cost of care does not increase.^{21 22} There may be savings to the system by avoiding unnecessary procedures.^{23 24}

I want to be able to communicate with my healthcare provider outside of consultations

At present, healthcare communication is usually conducted through face to face encounters within healthcare facilities such as surgeries, clinics, and hospitals. Patients could avoid unnecessary visits by using other means of communication such as the telephone or email. Doctors have been reluctant to use these because they fear that they might add to their already excessive workload, reduce their income and quality of life, or create legal liability.²⁵ Research evidence, however, shows that telephone calls and email messages are practical ways to complement follow up care.²⁶ Phone calls²⁷ and probably email²⁸ can enhance patients' adherence to prescribed medication, better inform healthcare providers about the results of treatment or of adverse effects, and improve health outcomes.^{29 30} Other methods such as videoconferencing and virtual reality may also revolutionise the clinical encounter.

Conclusions

Many, but still too few, patients of today are already benefiting from behaving like the good patient of the future. Their experience foreshadows what could be achieved if our current knowledge and resources were properly utilised. It only scratches the surface of what will result as new methods of communication develop and future generations of users emerge. The main lesson from current research is that the traditional concept of the good patient can sometimes lead to poor health care, unnecessary suffering, and potentially disastrous consequences. It will take time and effort to reach the point where the assertive patient is recognised as the "good" one. Ignorance, fear, inertia, and stubbornness remain to be overcome. But the research evidence is already clear. Real "good patients" are powerful agents for change.^{31 32}

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Funding: All authors were supported by funds from the Centre for Global eHealth Innovation, a joint effort by the University health network and the University of Toronto. ARJ was also supported by the Canadian Research Chair in eHealth innovation and Rose Family Chair in Supportive Care. CAR received additional support from the Patient education Program, Princess Margaret Hospital.

Competing interests: None declared.

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