Nine Tips to Help You Be An Active Participant in Your Health and Healthcare 3
Today, consumers are expected to be active participants in their health and healthcare. This is easy to say but very hard to do especially when you are sick, weak and scared. Also, most people have no or limited exposure to the healthcare system other than going to their primary care doctor for routine care, the emergency room or a walk in clinic for a cold, a broken bone or other minor incidents. So when faced with a healthcare crisis and thrust into the healthcare system most are shocked at how complex, frustrating and difficult the system is to navigate.
As I have mentioned in past issues of Nurse Advocate, I had a major healthcare event in November 2014 when I was diagnosed with a central nervous system brain tumor. This experience rocked my world, physically, mentally, emotionally, professionally and financially. The experience taught me many lessons. The biggest lesson by far is how hard it is to be a to be a patient. This is mostly because healthcare is like no other service we encounter in our everyday lives and NO ONE is prepared for the experience.
As I learned, life can change on a dime. When it does you realize how important your family and friends are as they become your support systems. You also appreciate how important healthcare insurance is as this is the mechanism to pay the bills. You are grateful if you signed up for the short and long term disability insurance plan your employer offered as part of your benefit plan as it provides income when you are not able to work. You also realize how important your faith is as it is what helps you get through the challenges of your illness. You also realize how expensive the cost of healthcare is and the pressures it puts on yourself and your family. 

To help you to be an active participant in your health and healthcare I decided to share some of the tips I learned as a nurse, a case manager and as a patient. I hope they help you to be better prepared to handle healthcare challenges that may arise.  

The last tip is specifically meant for each members of the healthcare team. I think I can speak for many patients and their caregivers and send this plea so they know how it important their help is in assisting consumers to navigate the complex world of healthcare. 
I want everyone to know that being a patient is a challenge, but with a caring team, clear communication and adequate resources we can navigate the journey successfully. So let’s get started! 
Tip One:  Take the time to find a primary care physician whom you like and trust. This might take a few tries, but it is worth the effort. Your primary care physician is the professional you will go to for your annual checkups, but also turn to when a problem arises. Their role is to help guide you through the healthcare system, make recommendations to specialists who can address problems when needed and ensure your care meet your goals and is coordinated. Having a primary care physician that you can discuss fears, challenges and healthcare issues is critical. An article in the New England Journal of Medicine provides an example of how one internist described his role as a primary care physician. Please take a minute to read: Instant Replay – A Quarterbacks View of Care Coordination
Tip Two: Read your member handbook as it explains your health insurance policy. Most of us get a member handbook when we first are enrolled or renewed in a health plan. I venture to say that not many of us have taken the time to read the handbook, learn the benefits the policy provides, how to use the insurance, or how to address questions as they arise.  

Most insurance companies have their member handbook on-line, so they are accessible to all members. Take the time review the member handbook so you are familiar with the rules. If you have questions after you review the material, call your insurance company. Most question can be answered by the customer care team who answers the phone. If your question cannot be answered at this level, ask to talk to a supervisor or if your question is medical in nature, ask to speak with a nurse. Every insurance company has nurses on staff whose role it is to handle medical questions for members.
Reviewing the member handbook will help you understand what is covered and what is not covered in your policy. Keep in mind; health insurance is a legal contract that outlines what is covered by the policy. Many people do not realize this and are surprised to find that a service your doctor ordered may not be covered. It should be realized that many times a service or treatment may be denied. Usually the reason a denial is issued is that the information provided did not contain the information needed to justify the request. Providers know they need to provide this information but many times don’t due to various reasons. Generally, once the rationale is provided, the request is approved. If not, there are steps to take to appeal the decision. 
The member handbook will spell out the process you and your doctor can use to appeal a decision and the time frame the insurance company has to handle the issue. There are regulatory statues that mandate the timelines the health plans have to follow so all stakeholders understand the rules. They are in place to protect the consumers, so knowing them will help your case. 
Another important tip to remember is if a service is denied to ask your doctor to call the medical director at the insurance company and have a peer to peer discussion. Many times this discussion can resolve an issue. 
Last, it is important to know that just because your insurance company does not cover something, you always have the option to pay for the service yourself. This is not always possible due to the high costs of healthcare services, but it is an option. 
Tip Three: Be proactive and have a financial plan. Many times when someone becomes sick, it is the first time they learn the details of their policy. They find out that they have a high deductible that has to be met before the insurance company pays any bills. In addition, they find there are out of pocket costs that have to be paid when you visit a doctor in addition to the insurance coverage. These costs can become a financial burden if you are not prepared. 
Today, due to the rising cost of health insurance, employers are cutting down on benefits and shifting much of the cost of the policy onto the consumer. As a result, many people are looking at starting a medical savings account or a flexible health savings account. These accounts allow you to use pre-tax dollars and put money away to pay for out of pocket costs and other expenses that may not be covered by your insurance policy. Talk to your human resource person about this benefit so you understand the rules of how the money can be used. 
In addition to health insurance and health savings accounts, you may be offered a short and long term disability policy which will replace your income in case you get sick and cannot work. There costs associated with these policies can be deducted from your paycheck so they are manageable. Many people find these plans helpful if they experience a health challenge that prevents them from working. If you are not offered disability insurance through your employer, you can buy a personal policy from a broker.
In addition to health insurance and disability insurance, it is important to have a personal budget and a financial plan that helps you and your family live within your means. It is also important to budget your income so you are prepared for an emergency (a natural disaster or healthcare crisis). You can determine the amount of money you may need by taking into account your family income and your expenses. Here is a link to an online calculator that might help you determine what you need in reserve. 
Many people are disciplined and can set up a savings plan for themselves, but many people need help. Consider engaging the services of a financial planner or a person who has expertise in financial management to help you set up a personal budget that allows you to prepare for the future and for unexpected emergencies that might arise. Keep in mind you do not have to be wealthy to set up a financial plan, in reality, everyone should have one to help prepare for your future and be prepared for life’s unexpected twists and turns. Having financial goals and a plan to meet your goals is important for you and your family financial health so don’t delay in getting your plan into place.
Tip Four: Keep records. As the healthcare industry moves toward electronic health records, there will be at a time when all of your health information will be saved and accessible from one place with the click of a button, but we are not there yet. Do yourself a favor and get a binder to keep all your records in one place. The binder will be a life saver if you have a medical emergency as it will allow your doctor(s) to review your medical history in an organized manner. 
Every time you visit your doctor, see a specialist, have lab work or any diagnostic test, ask for a copy of the report and put into your binder. This will allow you to know your results and be more familiar with your health and your healthcare history. 
If you are on any medication, write down each pill you take (this includes supplements and vitamins). Write down the date you started taking the medication, why you are taking it, the dose and how often you each medication. When the drug is discontinued, write down the date. Keeping this information is important so you can share with your medical team.
Having your own health records can cut down on duplication and unneeded test which can be costly. Also, it is important to realize that you are the only constant member of your healthcare team as healthcare professionals come and go. Having a copy of your records allows you to provide new providers with the information they need to become familiar with your case.
Everyone should know it is your right to have access to your medical records so do not feel shy about asking for them. 
Tip Five: Ask questions. As they say, there are no ‘stupid’ questions, and this is especially true when it comes to your health and healthcare. Today, consumers are expected to be active participants in their own healthcare, yet there is no formal education to help the consumer. When you go to your doctor’s appointment, take the time to prepare for the visit by writing down any questions you might want to ask. 
If you have a medical condition and you have done some research into your condition, bring the information with you. Doctors are getting used to their patients bringing articles and recommendations for the them to consider. The doctor should take the time to review the material with you so you have a better understanding and answers to your questions. They may have a nurse who can do this, but in the end, it is their responsibility. If they do not have the time at your scheduled appointment, many times they will take the material, review it at a later time and get back to you. Another alternative is to make another appointment to discuss alternatives and the goals of your care so everyone is on the same page.
Many physician practices have patient portals where your medical records can be kept. These portals provide a way for you to send a note to your doctor or the staff if you have a question or want to clarify something in your plan of care. Take advantage of this technology as it will allow you to be better informed and save you and your treatment team time.
Tip Six: Bring a family member, a friend or hire a patient advocate to be with you for all medical appointments especially to the ones where treatment decisions are going to be presented or made.  
Listening to your doctor or other healthcare providers can be difficult when you are not feeling well, are scared or not yourself. Many times you do not hear what is being said because you are distracted or cannot concentrate, so having another person with you is important. 
When I met with the neurosurgeon about the next steps in my care when I was told I had a brain tumor, I had three people with me, my husband, and two friends who were healthcare professionals. We all were in the same room, and heard the same things, but after the doctor left and we talked about the conversation, we all came up with different pieces of the puzzle.
My husband was concerned about me, and what was going to happen to me and our life as a result of my diagnosis and impending treatment. 
My two colleagues were there to listen to the doctor, learn about the diagnosis, understand the plan of care and gain insight into my prognosis. My friends knew I did not want to have brain surgery in the small community hospital I was in, so they set out to investigate alternatives. As a result of their research, they recommended that I be moved to the Sylvester Cancer Center for treatment. Once we agreed, we talked to the doctor who was treating me at the small community hospital about going to Sylvester. He agreed and helped us make plans to be transferred. 

Once transferred, I was under the care of an expert neurosurgeon who performed the biopsy to determine the type of tumor I had. Once the results came back from the brain biopsy, he coordinated my care with an expert hematologist who agreed to take my case. Even though I was a nurse and a fairly savvy healthcare professional, I did not have the mindset to help myself so engaging my colleagues (one was a case manager and one was a patient advocate) allowed me to get the right care, at the right time, by the right treatment team at the right facility. I truly believe their recommendations saved my life.
Today, more and more consumers are hiring professionals known as patient or health advocates to help them when they are faced with complex medical decisions. 
Unfortunately, many people do not know why they need an advocate. Many think the healthcare system set up to help them?  To help people understand the role of an advocate, I often ask this question. Would you go into a court of law without an attorney? If not, why would you go into the healthcare system without a healthcare advocate? The healthcare system is confusing, unfriendly, and dangerous. An advocate is someone who can ensure you have a voice is what is happening, help to improve communication and break through the barriers that exist.
In many cases, a family member or friend can serve as your advocate and do a great job in taking notes, prompting you to ask questions or being there to share concerns with your doctor or another member of the health care team.  In addition, they can help you recall instructions and information that you might have missed. Yet when faced with a serious decision or a complex medical condition, hiring a professional patient or health advocate is a smart decision.
Tip Seven: Your opinion counts! Today, there is a huge focus on redesigning the healthcare system to be patient and family centered.  As a result, there is a great deal of work going in organizations to better understand how patients perceive the health care system and gain insight into their experience when they visit a physician, or another provider. Similar to buying a car or staying at a hotel, you will receive a survey after you visit a provider or are discharged from the hospital. Take time to complete these surveys and be honest with your answers. People are reading them and paying attention to the results. 
Improving the patient experience is so important that payers such as the Centers for Medicare and Medicaid and many commercial insurance companies are basing reimbursement to hospitals, rehabilitation centers, doctors and others providers on quality measures and the results of patient experience surveys. In fact, many hospitals have hired Patient Experience Officers who are in place to help the organization improve quality and ensure each patient has a good experience during their stay. 
Because dollars are now tied to quality and the patient experience, organizations and the professionals who run these organizations are paying close attention to YOU. Patients and caregivers need to take advantage of this attention and share their experiences (good and bad) so that credit can be given when appropriate and improvements can be made when needed.
Tip Eight: Review your bills and question them when they do not look right. Recently there has been a major overhaul in healthcare billing with the adoption of an updated coding system to ICD-10. If you have ever had a medical procedure you undoubtedly received a bill for the service you received. If you are like most people trying to understand your bill was a challenge. That is because bills are made up of codes which correspond to the treatment, services, or equipment ordered. As WE (the consumer) do not have access or understand these codes it makes it impossible to review a healthcare bill. 
The fact that medical bills are hard to understand does not leave you off the hook in paying attention to them. So, it is up to you to ask questions. If you get a bill you do not understand, call the organization who sent you the bill, and ask them to send you an itemized bill. An itemized bill explains the services provided and the cost associated. Once you have this information, you can review the bill to see if there are mistakes. Do not be afraid to question providers as mistakes do happen and many times you can catch them.
Next, check with your insurance company to make sure they paid their portion of the bill and ask them what you are responsible to pay based on your health insurance policy.
If you have to pay a portion of the bill and cannot afford the payment, contact the organization who sent you the bill and explain that paying your portion is a hardship. You can ask them two things: First, you can ask them to accept what the insurance has paid and forgive your share as it is a hardship. If they will not do this, you can tell them you will pay a certain amount each month. Many will allow you to do this. 
I wrote a blog post on tackling medical bills that might be helpful. You can access the post by clicking here.
Tip Nine: This tip is for all healthcare professionals, CEOs, Patient Experience Officers, nurses, case managers and anyone who ‘touches’ a patient in the broad healthcare system. Please recognize that WE (patients and caregivers) need your help. Most of us are not health care professionals and even those who are, are not in that role now. We are sick, scared and in an environment we are not familiar. 
Please take the time to explain things to us so we know why we are waiting, and provide us with updates as to what we can expect from our visit. Please try to help us understand what is wrong with us, what we can do to improve and what the resources are available to help us manage our conditions.
Please don’t be defensive when we ask you a question. We realize you have rules, regulations, and policies, but we also are sick or have a loved one who are sick, and we are trying to understand how the systems works. 
If we bring a patient advocate in with us, please embrace that person because I trust them and I want them to be involved.  We realize there are confidentiality requirements, but once you have our consent, please include this person in the conversation. It is not because we do not trust you that we have brought this person in, it is because we want another person to hear the plan of care and help us know what we are supposed to do. Their involvement will help me (the patient) be more informed and able to cooperate with the plan of care.  In the end, we will all win. 
Thank you for reading Nurse Advocate! 
Please take time to leave a comment in the comment box below. If you have a tip that helped you on your journey, please leave it in the comment box. If you are a healthcare professional and have a tip for consumers, please share below. 

See you next week! 
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