I was surprised to learn recently that a large percentage of patients are “passive spectators” of their own healthcare. Passive patients rely on their doctor’s experience and knowledge. As a result, they “sit back” and let the experience happen to them. Why is this important? Because your health can suffer if you don’t engage in your care. How can you get the best healthcare? Actively participate in all aspects of your care – at home, in the hospital, and at the doctor’s office.

Let’s clarify the terminology.

The concept of patient participation can relate to all aspects of health care, including decision making, self-medication, self-monitoring, patient education, goal setting, and taking part in physical care.

Because this is a relatively new focus, there are many terms that refer to the concept of patient participation, including:

Patient collaboration
Patient involvement
Partnerships
Patient engagement
Patient empowerment
Patient-centered care

This post covers how patients and family caregivers can participate in their care to help them get the best healthcare possible.

Why should you participate in your care? So you can get the best healthcare!

Of course, your doctor’s knowledge and experience play a huge role in your care and health outcome. But, for the best care and outcomes, you must participate. In fact, research shows that effective communication between the doctor and the patient is linked to:

Better health outcomes
More appropriate medical decisions
Higher patient satisfaction

Conversely, a comprehensive survey by AARP found that patients who are less engaged in their care are more likely to:

Be readmitted to the hospital within 30 days of discharge
Experience a medical error in their diagnosis and/or treatment plans
Have poor care coordination and communication among their providers
Have a serious health condition for which they do not receive needed medical attention
Not follow the advice of their medical providers
Have poorer outcomes

Researchers Vincent and Coulter eloquently summarize the importance of patients being engaged in their care:

“Patients have a key role to play in helping to reach an accurate diagnosis, in deciding about appropriate treatment, in choosing an experienced and safe provider, in ensuring that treatment is appropriately administered, monitored and adhered to, and in identifying adverse events and taking appropriate action.”

Hopefully, this information convinced you that it’s worth the effort to fully participate in your care so you can get the best healthcare possible.

Most people are not active participants.

Unfortunately, many patients refuse to accept the role of active participant and therefore don’t participate in decision making. Surprisingly, research estimates* that between 48 – 80% of patients do not want to be involved in decision making.

What stops patients from actively participating?

There are many factors that influence patient participation.

One study found that women, healthier people, and those with more education were more likely to take an active role in decision making.

Black and Hispanic patients were more likely to want their doctors to make the decisions.

Collectively, patients’ desire to fully participate increased with age until they reached 45 years, but then declined after 45.

Additionally, there are other factors that impact patient involvement. The list includes type of illness, willingness to speak up and actively participate, confidence in one’s abilities, and the type of decision required and the potential stakes.

Do you recognize any of these barriers in yourself?

The struggle is real. It’s hard to remember and understand medical information.

If you can’t remember or properly understand medical information related to your health, it’s hard to make informed decisions regarding your diagnosis and treatment. The big problem? You don’t know what you don’t know! While you think you have everything correctly remembered, the reality is you likely do not.

A 2018 report finds 51% of patients struggle to recall information.

Research published in 2018 evaluated patients’ ability to recall their interactions with their doctors. Some patients could recall most of their visit once a staff person provided prompts. Yet the majority of patients could only recall 1/3 – 2/3 of their doctor’s recommendations from that visit. Specifically:

49% of patients could recall their doctors’ decisions and recommendations without any prompting
36% of patients needed a prompt to remember the decisions and recommendations
15% could not recall any decisions or recommendations, or remembered them incorrectly
Patients with less than a high school education correctly recalled 38% of the information without prompting
Patients with a college degree correctly recalled 65% of the information without prompting

This study also found that doctors rarely used techniques thought to improve recall, such as open-questioning and “teach back”.

Patients quickly forget medical information.

Research indicates that 40-80% of patients almost immediately forgot the medical information their doctors just told them. As one would expect, the greater the amount of information doctors present, the lower the proportion that patients correctly recalled. Most noteworthy, almost 50% of the information that patients remembered they remembered incorrectly.

Researchers identified 3 reasons patients struggle to remember health information:

Factors related to the doctor, including the use of difficult medical vocabulary.
The method the doctor uses to provide the information, such as written vs oral information.
Factors related to the patient, such as those outlined above.

A few other findings of interest.

One study found that 78% of emergency room patients did not understand the instructions provided by their doctors. Furthermore, only 20% realized they did not understand the information provided.

Additionally, most people struggle to understand medical information. According to a literacy survey, 88% of adults have difficulty understanding and using the everyday health information that is routinely available in healthcare facilities and from other sources.

What do doctors think about patients’ participation in their care?

Interestingly, doctors and patients often hold different opinions regarding how much patients should participate in their care. A 2016 survey by Xerox of patients, healthcare providers and payers showed significant differences in views regarding patient engagement, including:

More than 50% of patients think they are the ones primarily responsible for their care, yet less than 6% of providers agree.
95% of patients reported they likely know how to take care of their own health, yet only 40% of providers and payers think that is the case.
90% of providers and payers think patient engagement relies on the encouragement of providers, but only 55% of patients reported feeling similarly.
Most providers and payers thought that patients’ delaying treatments was due to the associated high costs, yet less than 1/2 of the patients reported finances were the cause of delays.

How can you get the best healthcare possible?

Everything required of you as you navigate the medical world is overwhelming. There are so many new, often stressful, things to do, including learning new terminology, making treatment decisions, and managing complicated medication regimens.

On top of this, doctors are often intimidating. Some doctors display an arrogance and authority that is unnerving. Add to this the time-constrained slots allotted for each patient, and it’s no wonder people struggle to engage in their care.

Be open-minded and honest.

Firstly, be aware that you might struggle to manage your health more than you think. Be open to hearing suggestions from your providers. And be honest with yourself and your doctor about how you deal with health and lifestyle concerns.

Find the right doctors.

Secondly, find the right doctors for your needs. Look for providers who are willing to answer as many questions as needed during appointments and involve patients in shared decision making. Consider finding a new doctor if you and your doctor do not communicate well. For more information, read Is it Time for a New Doctor?

Get the most out of appointments.

Prepare for appointments! Write down your “story” and your questions before you go to the doctor. Make sure you relate all of this to your doctor – even if he/she is rushing you.
Take careful notes. Use a notebook to keep track of signs, symptoms and questions at home, and to record all important information at doctor’s appointments.
Don’t be afraid to ask your doctor to repeat or rephrase something if you don’t understand. Don’t give up until you feel comfortable in your knowledge.
If something doesn’t seem right – speak up! Be the polite, squeaky wheel.
Keep your medical records (test results and reports, clinical trial information, etc.) organized and bring it with you to every medical appointment.

Pay attention to medication management.

Be sure to understand why, how, and when to take each medication.
Set up a reminder system so you don’t miss any medications.

Reduce your risk of infections.

Ask your doctor (and other staff) to wash their hands, and/or put on new sterile gloves, in front of you before you let them touch you.
If medical equipment used on/for the patient is not disposable, ask the staff if it is sterilized before it’s used on/for each patient.

Want to learn more?

Read these posts:

How Can You Get the Best Healthcare? Actively Participate!

Let’s clarify the terminology.

Why should you participate in your care? So you can get the best healthcare!

Most people are not active participants.

What stops patients from actively participating?