I was surprised to learn recently that a large percent 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
- Patient engagement
- Patient empowerment
- Patient-centered care
What are the benefits of participating in your care?
Research shows that effective communication in the patient-doctor relationship is linked to higher patient (and doctor) satisfaction, more appropriate medical decisions, and better health outcomes.
Conversely, studies found that patients who are less involved 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
Of course we all want the best chance of a full recovery! These findings should convince you that it’s worth the effort to fully participate in your healthcare.
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 is stopping you 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. African-American 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 include 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 may not. How can you know if you are remembering everything correctly? Although it would be hard to know for certain how much information you are understanding, you are probably struggling like most other patients (who also don’t realize!).
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”.
40-80% of patients immediately forget medical information.
Research indicates that 40-80% of patients 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.
A 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, it’s hard for most people 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.
How can you participate more?
While you may think you are actively participating in your care, you probably have room for improvement. Because it’s so important to actively participate in your healthcare, read my posts:
- 6 Tips to Better Manage Your Healthcare for 2018.
- Patient-Doctor Communication. What’s the Impact on Patient Health?
- Being an Engaged Patient Can Help You Get the Best Medical Care Possible.
*It’s worth noting that much of this research took place at least 10 years ago – the percentage of people actively engaged may be higher now.