Patients are the most important component of healthcare. Yet, they are often viewed as a liability or cost center by providers and payers.
Public mistrust in the healthcare system is on the rise. In fact, it’s becoming quite a common phenomenon these days. As such, this is an important topic that needs more attention since the public’s mistrust in healthcare significantly influences decision making and can lead to worse health outcomes.
In fact, the results of one study shows that 20% to 80% of of people did not trust the health care system (Armstrong, 2006).
Another more recent study of 33,000 participants indicates that in the USA, trust in the healthcare system decreased by 20 percent (DiGrande, 2018).
This blog post will explore the causes, consequences and solutions for mistrust in healthcare.
Public mistrust and compliance with health recommendations
Many persons are often perplexed when individuals make some of the most foolish health choices. For instance, I once had a diabetic patient who stopped taking her medications and decided to drink cane juice everyday instead.
But, she did this because her mother, who has no medical training, told her that the cane juice would be better.
Seems illogical right?
Yet, so many persons also find it hard to believe their health care profession and other public health officials. They often more readily listen to their neighbor, friend or spiritualists about matters relating to their health.
But, it really does boil down to a matter of trust. Persons genuinely trust these individuals and truly believe that they have their best interest at heart. And, that’s much more than many people would say for health officials.
However, I should point out that mistrust for their primary health provider is usually much lower than for other health officials. Mistrust for primary health provider is approximately 10-20% according to one study (Armstrong, 2006).
Notedly, much research has found that one factor leading to public mistrust is the incidence rate of medical errors which are often perceived as being common.
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Reasons for avoiding medical care
However, the reasons for public distrust in health often varies. One study by Taber et al. (2015) of 1,369 participants showed that the main reasons why persons avoid medical care – even in cases of life, threating conditions – include:
- More than 33% due to unfavorable evaluations
- Low self-perceived need
- Time and cost
Actually, these unfavorable evaluations include poor communication, belief that no follow-up will be done, being afraid of misdiagnosis or of their condition worsening.
Some participants even mentioned that the way their doctors communicated caused them to feel stupid, that the doctors did not take their concerns seriously, paid more attention to their screens, had an apparent lack of concern or appeared to be too busy.
Others referred to wanting to avoid the long wait times or simply having a general dislike and/or lack of trust for the physician and of course having no confidence in the healthcare system (Taber et al., 2015).
"A lack of transparency results in distrust and deep sense of insecurity."-Dalai Lama
Important information about public mistrust
Before we continue, there are some key facts that you should know about public mistrust:
(1) Public mistrust may be because of misunderstanding
Limited availability of information can lead to misunderstanding or misperceptions about the system. Despite the potential for errors, trust in the health care system is important.
Additionally, many individuals don’t access accurate information (e.g., patients do not read medical journals), which can lead to misunderstandings or misperceptions about the system.
(2) Public mistrust is not easy to remove
Mistrust in the health care system is difficult to change, even with accurate information. Despite evidence of improvements, trust in the system remains low.
This may be due to individuals’ lived experiences, which is difficult to change.
(3) Public mistrust may be an issue for underrepresented groups
Patients who are members of underrepresented groups (e.g., racial and ethnic minorities) may be disproportionately affected by mistrust.
For instance, much research has shown that Black Americans have lower levels of trust in the healthcare system compared to Whites.
(4) Public mistrust can lead to patient’s exclusion from clinical trials
Mistrust is a barrier to inclusion in medical research. As a result, underrepresented patient populations may also be under-represented in clinical trials, which can lead to gaps in the evidence base.
(5) Patients are not the only ones with mistrust in health care system
Physicians also have issues with trust of their own medical system. Some physicians also feel there is a lack of transparency with regards to research findings, medical training and treatment costs.
Mistrust is not exclusive to the United States. High rates are present in many other countries around the world.
"At no time in the past century has public distrust of the government been so broadly distributed across the political spectrum, as it is today".-Phil Zimmermann
What causes mistrust in health care?
Undeniably, some members of the public are unwilling to follow health recommendations.
This may be due to concerns about risks that they perceive are associated with particular medications or procedures, safety issues, problems understanding information given by health professionals or a belief that they know what’s best for their personal health.
There are many factors which contribute to this distrust in healthcare, including:
- Lack of information from physicians on the benefits and risks of the treatments they recommend.
- Gaps in communication between doctors and patients on options or risks of treatment decisions.
- Differences among health care providers about what constitutes good medical practice.
- Lack of transparency from providers on costs or treatment options.
- Dismissive attitudes from doctors.
- Belief that pharmaceutical companies influence the outcome of research.
- Fear-mongering messages from pharmaceutical companies.
- Misdiagnosis and errors made by healthcare providers.
- Policy that’s based on ideas and politics and not facts and evidence.
- An inability or unwillingness to understand scientific claim.
- Lack of good quality evidence to support claims, and a belief that powerful interest groups influence official advice.
- The public mistrusts medical research because they do not consider it to be relevant or applicable to their individual situation, due to the difficulty in interpreting scientific information.
- A belief that health recommendations are not consistent or change too frequently can lead to public mistrust.
- The public mistrusts medical advice because they believe the information may be biased by financial interests, and aims at influencing their behavior.
Solutions for public mistrust in health care
It’s important to note that although education is vital, education alone is not enough to remedy public mistrust.
As I discussed above, they’re so many reasons and influences that contribute to public mistrust. Some of these perhaps occurred for several years – even generations. The solutions won’t be easy or fast.
To increase compliance with health recommendations, medical advice need to be consistent and unambiguous. Patient participation needs to improve, and the public needs to trust that recommendations follow sound evidence.
In fact, it’s important to instill confidence in the public that their views and personal experiences are being heard and considered alongside scientific evidence.
Particularly when it comes to the current pandemic, persons need empathy especially due to the great deal of misinformation that is available on social media.
Empathy will allow discussion. Even though it’s challenging, contempt does not change opinions (Chen, 2020).
"Distrust in government isn't baseless cynicism".-Ben Shapiro
Open and informed communication to mitigate public mistrust
By increasing the transparency and accountability of healthcare providers, patients can gain a better understanding of their healthcare needs and how to address these needs.
As a matter of fact, patients may also feel more comfortable communicating with their providers when they have a good understanding of what to expect from their provider experience.
Improvements in healthcare quality to mitigate public mistrust
Mistrust in the health care system may be reduced when individuals experience positive medical outcomes or when they receive respectful and compassionate healthcare services.
Programs that improve patient-provider communication to mitigate public mistrust
Communication training programs for both providers and patients can help to address many of the issues that lead to mistrust.
Using technology to mitigate public mistrust
The internet and social media have been suggested as one way to facilitate patients’ access to health information, as well as provide a platform for open discussions about healthcare topics.
Unfortunately, many of these changes require time and willingness from numerous decision makers.
But remember, public mistrust in healthcare may still negatively impact your personal wellness. So, it’s imperative that you are aware of strategies that you can take to overcome your mistrust for the health system.
Simple strategies you can take to overcome mistrust in health care
Public mistrust not only leads to deterioration of health care quality, but will also influence your compliance with treatment and recommendations.
To overcome mistrust, communication is key. It’s important to ask questions, get a second opinion, do your own research and not to remain silent. But, always remain positive and open to changing your opinion.
1. Don’t be silent
Take an active part in the decision making process. You should work on understanding more about your disease, illness and medications.
2. Communication is key
Improve communication with your health care providers. Open and clear communication between you and your health care providers may help to improve the relationship.
3. Ask questions
Do not be hesitant to ask questions regarding the problem you are facing with your health care providers. Express your feelings and ask questions as often as possible.
This will help to minimize doubts and confusion and will allow you to feel more confident about the decisions you make.
4 Get a second opinion
Second opinions can also help to ease mistrust. If you feel that your health care provider is not giving you enough information, or if you are feeling confused about your illness, then seek a second opinion.
Discussing this with another doctor may be useful in gaining more insight into how other people view their own.
5) Be positive
Keep an open mind. Don’t ignore the positive aspects of the healthcare system. Work together with your health care providers and try to solve the problem.
6) Trust yourself
Trust yourself and your own judgement. However, the decision-making process must involve an in depth consultation with their heath care providers and/or personal research.
7) Be open to change
Don’t have too much pride to change your mind or to admit your mistakes. It’s important that you can accept your own limitations and don’t be blindly stick to your initial decision.
Consequences of public mistrust in healthcare
Delaying health care treatment and recommendations can have severe consequences- both for the individual patient, healthcare providers and for population health.
Research shows that persons who don’t trust the health care system generally report poorer health (Armstrong, 2006).
As such, even though your reasons for public mistrust may be valid, it’s crucial that you always seek accurate information and make informed choices based on unbiased data and not preconceived ideas.
Mistrust of the health care system can lead to avoidance and delays in prevention, diagnosis and treatment while increasing suffering and decreasing life expectancy.
Many health conditions are progressive, meaning if left untreated they will worsen overtime. This results in higher rates of morbidity and mortality.
Many people only seek medical attention when their symptoms become unbearable or they are forced to by family members.
When they do finally consult, ill health may have progressed to a more serious state. In the case of communicable diseases this would’ve likely spread to several other individuals.
Note, communicable diseases are those that are infectious or can be transmitted from one person to another.
Summary of the consequences of public mistrust in healthcare
- Adversely affects an individual’s physical and psychological well-being.
- Contributes to social inequalities.
- Increases healthcare disparities.
- Reduces patient safety.
- Decreases provider productivity.
- Impacts clinical research recruitment and retention.
- Increases costs of care.
- Results in increased hospitalization rates.
- Refusal to follow preventative measures such as lifestyle changes and vaccination.
Research also shows that persons who had a lack of trust for health information were also much more likely to believe false, inaccurate information (Drake, 2021).
"You can either trust people until they failed you or distrust people until they're proven trustworthy".-Deepak Butola
Final words on public mistrust in healthcare
Patients are increasingly mistrustful of the healthcare system, and it’s not hard to see why. Healthcare may seem to be only focused on financial gain and information may sometimes be biased.
However, for your personal wellbeing and that of your society, it’s important to be knowledgeable about the consequences and solutions for public mistrust in healthcare.
On a scale of 1-10 (10 being the highest), how much do you mistrust the health system? What’s the main reason for this lack of trust?
How common are medical errors?
Unfortunately, Medical errors are actually quite common. However, only about 1 in 100 result in harm to the patient (Bates, 1996). Fortunately, many adults don’t know what a medical error is.
Medical error is defined as an adverse result that may or may not be harmful. A medical error is preventable but unintended and can be as a result of an action or failure to act.
How to evaluate the accuracy of health information?
The accuracy of health information found online can vary widely. However, it’s crucial to search for reliable sources for medications, supplements and medical information.
Sometimes it’s easy to tell if information is accurate. However, some websites may be masquerading as reliable sources, but are actually peddling false or misleading information. Read more
Armstrong, K., Rose, A., Peters, N., Long, J. A., McMurphy, S., & Shea, J. A. (2006). Distrust of the health care system and self-reported health in the United States. Journal of general internal medicine, 21(4), 292–297.
Bates DW. Medication errors. How common are they and what can be done to prevent them? Drug Saf. 1996 Nov;15(5):303-10.
The Commonwealth Fund (2021) Understanding and Ameliorating Medical Mistrust Among Black Americans
DiGrande, S (2018) Survey Shows Trust in Healthcare Systems Declining Globally
Drake, K (2021) Why do some people believe health misinformation.
Taber, J. M., Leyva, B., & Persoskie, A. (2015). Why do people avoid medical care? A qualitative study using national data. Journal of general internal medicine, 30(3), 290–297.
Woskie L R, Fallah M P. Overcoming distrust to deliver universal health coverage: lessons from Ebola BMJ 2019; 366 :l548