If your physician asks you what kind of treatment you prefer, how does that make you feel? As patients and families are expected to take more responsibility for their own health care, we ask, can it work? And who benefits?

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Patient involvement implies two-way communication between service providers and users.

The traditional doctor-patient relationship has tended to sideline patient opinion. The patient’s role is to comply, because “doctor knows best.”

The patient describes the relevant symptoms, the doctor instructs and writes a prescription, the patient nods and leaves. What happens next depends largely on how well the patient has understood and the patient’s ability to pursue the treatment in terms of money and time.

The last 30 years, however, have seen the emergence of a whole-person approach to mainstream health care and an explosion in public health education.

New attitudes are facilitating a more equal balance of power, where patients can increasingly expect to participate in decision-making and treatment planning for their own health.

This spotlight will explore some of the benefits of patient inclusion and some factors that affect its progress.

The focus of 21st-century health care is shifting from the disease to the patient, as patients and physicians increasingly collaborate and share responsibility for care.

In today’s health care setting, it is the right of patients to be educated and the duty of health care providers to educate them.

Health education can reduce the burden of disease in populations and is supported by governments. The US federal government’s “Healthy People” initiatives encourage all Americans to join in promoting health and preventing disease through exercise, screening programs and so on.

Increased access to health information, coupled with this shift in ethos by health providers, are equipping patients for a more active role in their health. As patients become more aware and take on more responsibility, they will also want more say in their treatment.

In the new relationship, the health care worker guides people to make lifestyle changes that prevent serious illness; and if a patient does falls sick, the partnership continues in the search for a solution.

As the UK’s National Health Service (NHS) puts it: “No decision about me without me.”

Patient engagement, under the right conditions, is a win-win situation. More interaction and a better relationship can enhance patient adherence.

Medical News Today has previously reported that half of patients do not take medications as prescribed, changing the dosage or timing or stopping altogether for a variety of reasons.

Fast facts about nonadherence
  • In the US, 20-30% of prescriptions are never filled
  • 50% of medications are not continued as prescribed
  • 49% of people with hypertension do not adhere to long-term therapy
  • 25-50% of patients discontinue taking statins within 1 year.

In 1996, 58% of visits to US emergency rooms resulted from not following a physician’s instructions. More recent figures suggest that up to 43% of patients do not adhere to treatment regimes, resulting in deterioration of health, loss of working days, spread of disease and even death.

Why do people discontinue medication regimens, miss appointments and avoid rest or dietary recommendations?

Common reasons include financial pressure, lack of transportation, inability to take leave from work or child care, not understanding or simply not believing the condition is severe enough to need the recommended action.

Many people stop taking antibiotics when they feel better, only to find that the symptoms return, because they have not understood how antibiotics work. Weight-loss diets fail when people do not see rapid results.

Understanding how things work encourages people to follow through, especially when the effects are long term. Two-way communication increases the likelihood of patients understanding.

Building a relationship with patients can help physicians to uncover other barriers to accepting treatment, such as outcome preferences, cultural traditions, family situation, priorities, values or lifestyle factors.

A woman who repeatedly misses appointments may be hesitant about seeing a male doctor for gynecological problems; another patient may be convinced that their problem stems from bad luck or a curse – medicine will not solve it, it is not worth taking it.

Spending time with a patient can be more efficient in the long run. Finding out what the patient can and cannot do will help to prevent wasted consultations, missed appointments and discontinued treatment.

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Involving families can lead to better outcomes.

Resources can be used more efficiently if individuals learn to manage their own treatment and recovery, because they can be discharged earlier from acute care facilities. Patients become less dependent and more in control of their own health.

Family involvement can help to convince patients about the need for treatment and treatment options and ensure that selected options are feasible and ease the strain on health care facilities. A patient who is discharged early can be monitored, cared for and supported by well-prepared family members.

Training families can help ensure safe outcomes. Ongoing communication can provide extra support while caring for the patient, to minimize stress and anxiety, especially if the illness is serious or has future possible repercussions.

In “Basic concepts of patient education,” Jones and Bartlett point out: “Patients’ participation in health care assessments has been largely associated with better health outcomes. […] DIrect patient involvement in treatment decisions increases motivation, empowerment, adherence and satisfaction.”

MNT recently reported on research carried out by Dr. Peter C. Minneci – of the Research Institute at Nationwide Children’s Hospital in Columbus, OH – and colleagues into family consultation and outcomes.

The study found that engaging families in decision-making led to good outcomes when treating children who had acute, uncomplicated appendicitis with observation and antibiotics, instead of operating.

The benefits included fewer disability days for the children who took antibiotics than for those who underwent surgery and savings on treatment. Time, money and pain were reduced, but success depended on family agreement and willingness to follow through.

Dr. Minneci told MNT:

Every patient/family’s unique perspective is important. Understanding their values and opinions will help to better inform them about their treatments and help them make the best treatment choice for themselves.”

In cancer treatment, patient involvement can help patients and families choose the best option for treatment and provide ongoing support in a difficult time.

Breast cancer mastectomy

Women with early breast cancer can benefit from close involvement while considering the range of treatment options and their impact on body image.

In one study, breast cancer patients over 65 years and those with no college education felt they had no control over their disease and were taking a passive role in consultations, letting doctors dominate and offer their own preferences for treatment.

The researchers suggested that increasing patient knowledge and using more patient-centered behavior would encourage a more active role. It would offer more options, greater control and more access to emotional support from the health care provider.

Bipolar disorder and schizophrenia

In long-term mental health disorders such as bipolar disorder and schizophrenia, nonadherence affects over 50% of patients. Two-way consultation can help to achieve a balance of everyday living and health.

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Adherence to medications is low among people with bipolar disorder and schizophrenia.

A study by SANE, a mental health charity in the UK, shows that most service users stop taking their medication “in response to the everyday challenges of ordinary living,” to avoid problems such as side effects and cost.

Others take the decision to self-manage without medications. Some succeed, others relapse with serious, even life-threatening consequences.

To illustrate, the study describes two female patients with bipolar disorder:

  • Patient A takes extra pills when she feels depressed, and none when she feels good, in order to “feel the high.” She does not tell her doctor because she does not want to interact with anyone and does not want the doctor to know she is not following instructions
  • Patient B has similar habits, but is able to discuss them with her doctor, who listens and trusts her judgment.

SANE call for a shift in focus away from adherence to supporting patients in their treatment choices. An ongoing relationship builds understanding and trust.

If patient engagement is a win-win situation, why is it not happening everywhere?

A matter of time

Patient-centered care is complex and multidimensional, and physicians are hard-pressed to meet targets and treat large numbers of patients.

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Time pressure makes it hard for doctors to build relationships with patients.

Most doctors do not have time to listen, explore options and build relationships with patients.

In a major European survey, some patients complained that the doctor does not even look at them; doctors say that time pressure means they have to listen and write simultaneously. The patient feels that the doctor does not care.

Timing issues may mean that the physician has to present options while patients are stressed and unable to respond appropriately. Patients may think that a doctor “does not know what he or she is doing.”

Other shortages can mean that alternative treatments are just not available to their patients. Where resources are perceived as lacking, attempts to involve patients may lead to mistrust of the provider’s intentions. Discharging people from the hospital early, for example, can lead to accusations of shirking responsibility.

Roles and communication

Resistance to change in the traditional patient/doctor roles may cause doctors to feel that their position is being undermined or that their status is lowered.

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Not all patients want to be involved in decision-making about their own health.

Patients may feel uncomfortable questioning or challenging the physician, or may not want the responsibility of decision-making. Age and cultural factors can contribute.

Communication skills can be a barrier. In one study, poor physician communication increased the risk of patient nonadherence by 19%, while training physicians to communicate appropriately raised adherence 1.62 times. Communication is essential for a relationship of trust as well as patient understanding.

Patients may have difficulty understanding and be afraid to ask for clarification. The medical system is complex, and people with low literacy levels may be embarrassed to say they do not understand or cannot read.

Safe and effective patient involvement means patients must be fully informed about their condition and, if necessary, trained in care and treatment.

Information and choices should be culturally appropriate, accessible in a suitable language and simply written. Needless to say, only research-proven solutions should be offered.

Misunderstanding of the concept of patient involvement can cause confusion. Doctors may offer choices unclearly, without explaining fully or really intending to consider the patient’s wishes.

Patients may be unwilling to discuss problems concerning diet, addictions, money, problems at work, domestic abuse and so on, all potential sources of ill health, but also sources of shame. Physicians must take care to come across as nonjudgmental.

Some doctors are reluctant to disclose patients’ medical records in case they panic through not understanding, or misunderstanding the scientific terms.

When asked whether he thought most patients want to be involved in decision-making, Dr. Minneci told MNT:

Every patient is different. Some families want to be informed and very involved with the decision-making process. Some want to be informed but prefer for the medical team to make all of the decisions. We think it is essential that families are given the information so that they can determine their level of involvement.”

If patients do not want to be asked what to do, outcomes could be jeopardized.

The Internet has been a catalyst for patient engagement, but studies show that patients see Internet health information more positively than health professionals do.

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Checking symptoms on the Internet can increase anxiety and lead to self misdiagnosis.

Professionals have called for more regulations to discourage misinformation, hypochondria and self-misdiagnosis by patients. Some doctors complain that when patients consult the Internet, it can take time to persuade them that what they think is wrong with them is incorrect.

Internet research can also lead to unrealistic expectations, such as therapies that are too expensive or not yet available to the mainstream.

Internet rumors about side effects of drugs can cause people to discontinue them, putting lives at risk. MNT recently reported that many people stop taking statins after hearing negative news stories.

When we asked Dr. Minneci how far he believes patients are currently included in decision-making on treatment options, he told us that it depends on the physician and the specialty.

“Oftentimes, treatments are presented as definitive and necessary and patients are being informed but not actively involved in the decision-making process,” he said.

He added:

Patient involvement can improve both [patient] satisfaction with care and their outcomes. Empowering patients to be active in their care, ask questions, and understand their disease and the risks and benefits of their treatment options is critical to delivering optimal patient care. It allows patients to be a part of the process and can lead to better compliance with treatments and earlier reporting of problems.”

Studies have shown that younger patients with a higher educational level expect to be more involved. As patients become more sophisticated and the public more health-aware, patient involvement is more viable.

In 21st-century health care, an increasingly collaborative approach seems inevitable, but the conditions must be right to make it work.