If I were preparing to take the SAT College Prep Exam, the “Analogy” part would phrase a question something like this: “Listening” is to Physicians as “__________” is to Patients? The Answer is “Organization.” It is the most basic of Effective Tools with which we, as Patients, have to maximize our chances of attaining a positive result from the “Patient Experience.” I am not a Licensed Medical Professional (“LMP”) but I think it is fair to say that the 200+ hospitalizations and approximately 20 major surgeries I have accumulated over the past 25+ years due to Crohn’s Disease does qualify me as an Expert with respect to Patients with Chronic Illnesses. As I am, however, also licensed as an Attorney and I also possess an MBA degree, I am aware and truly understanding of the importance of Licensure and of the dedication it takes for one to be so licensed in their chosen career field. That said, as an Un-Licensed Medical Professional who focuses on helping Patients with chronic diseases, I have become proficient at recognizing what is, and what is not, effective at keeping the battle with chronic illness fair while also ensuring that Patients succeed at being adequately treated by Medical Providers and in compliance with the ever-increasing list of rules and procedures set forth by their respective Insurers (which, incidentally, are also major hassles to the Medical Providers when they try and get paid from the Insurers).
Accordingly, set forth below are the Patient Tools which have helped me Survive and Thrive for the past 25+ years as a Healthcare “Consumer,” and a “Frequent Flyer” One at that!
- Maintain a Chronological List of all Major Surgeries, Treatments, Events and Medications. This can be tedious and it can conjure up bad memories but it will be of great assistance when you apply for Disability or you are involved with a lawsuit over a particular Drug or Treatment. It can also reveal certain patterns which, like a Food Diary, can help your Physician diagnose and treat you and provide the necessary impetus for your Insurer to approve such Treatments. This need not be done in one sitting and it can be developed over time but I assure you that it will come in handy many times in the future.
- List all the Doctors and Hospitals who have treated you along with their most current Contact Information. See above.
- Separate List of all Medications you have taken and are NOW taking.
- Separate List of all Homeopathic Products or Nutritional Supplements you have used. Note any noticeable reactions you had when first taking them or when you stopped taking them.
- Input all Doctor/Hospital Appointments into your Computer’s Calendar Program such as Microsoft Outlook. You may get a verbal appointment with a Doctor but when you must “look back” for a variety of reasons, including, but not limited to, tax reasons, lawsuits, etc., it is important that you know that you ALWAYS inputted such information into your Computer. This is a GREAT HABIT to get into as it will form a paper-trail which you will need in your never-ending quest to be and stay organized.
- List all Hospitalization Time Periods.
- List all “Temporary Disability” Periods. Some chronically ill people have private Disability Polices they smartly purchased before their chronic illness became diagnosed or “chronic” (e.g., Law School Graduates can get Disability Insurance through their American Bar Association [“ABA”] Membership) and I encourage EVERY person in their 20s and 30s to obtain some type of Disability Policy since the grim statistics indicate you are more likely to be Disabled than to Die at those ages. Others file for Temporary Disability through their Local Government in cooperation with their employer. In either case, it is good practice to keep a paper-trial of these periods of Disability.
- Obtain Film (i.e., Digital) and Paper Reports for ALL Diagnostic Testing performed on you either in or out of the Hospital. This includes Blood Work, Operative Reports and Pathology Reports. You would be surprised at how easy this is to accomplish. Just be polite to the folks at the Hospital or at the Out-Patient Facility Front-Desk and they will direct you to the Film Library. At the Film Library you need to ratchet up the politeness even higher so that they will prioritize your requests and put the Tests on CDs with a clearly labeled list of what is contained on that CD. You may have to obtain copies of the Blood Work from your Physicians simply by calling their support staff or you can make arrangements to have a copy sent to you at the Laboratory. I haven’t had great experiences with the follow-up of Labs so I usually follow-up with the Doctor as a default measure.
- Buy a durable Scanner and learn how to organize all of the above with reliable Scanning Software. I currently have an Epson V500 Perfection Scanner and it is perfect for these purposes. I have been using “Paperport” Scanning Software for many years and find it simple to use and incredibly effective in terms of organizing materials. I currently use Paperport Version 12 and I cannot speak more highly of a software program. Please be sure to implement a routine “back-up” plan to ensure that you never lose this information. For example, back-up all of your scanned-in documents to a Thumb-Nail Drive or to a separate External Hard Drive so that you ALWAYS have two (2) copies of everything.
- Denote the Specific Dates of Coverage regarding all Health Insurance Policies. If you or your company changes Health Insurance Companies (and this occurs quite frequently these days due to price point competition), it is imperative that you obtain a “Certificate of Credible Coverage” from the former Health Insurance Company so that you can always prove that you never had even one (1) day of a lapse in coverage. Then scan the Certificate into your Computer and keep these “Certificates” in their own Computer Folder so they are easy to access. In a world where “Pre-Existing Illnesses” can have serious consequences to the cost of, and possibly even access to, Health Insurance, the only Defense is to NEVER have a lapse in Coverage.
- Keep Track of all Health Insurance Reimbursement Submissions. Often when a Patient is in crisis, he or she is seeing a variety of Doctors or LMPs and the Medical Bills stack up fast. Regardless of the inconvenience, you must set aside time to submit them to your Insurer despite the Medical Provider assuring you that they will “submit” their Invoice for you. Most Medical Practices demonstrate excellent follow-through in this regard but they are not always aware of the specific Insurer submission guidelines. Thus, YOU must follow the specific submission instructions provided by your Insurer (e.g., some specifically state that they will not look at submissions that are “stapled” as they only want “paper clipped papers” because I presume all documents are scanned into their system and staples slow down their intake process and can possibly damage their scanning equipment) and ALWAYS put your Name and Health Insurance Company Member Identification Number on every Receipt and piece of paper being submitted. Then scan the submission into your computer including some notes to yourself so that you can track its progress for follow-up purposes. You stand a much better chance for reimbursement or even positive assistance from your Insurer when your follow-up phone call is polite and filled with details such as Name of Doctor, Date of Service, Date of Submission, etc.
- Become Familiar with your Health Insurance Company’s “Prior Authorization” (“PA”) Rules. This usually applies to expensive drugs such as Provigil (i.e., a drug prescribed for Sleep Apnea) and expensive diagnostic tests such as a CAT scan or MRI. Moreover, as somewhat of a stop-gap measure, you usually cannot even obtain the drug or test without issuing a PA number to the Medical Provider. But, while you may be comfortable in dealing with your Doctor and his or her staff, it is not their responsibility to be “up-to-speed” on the Prior Authorization policies of your Insurer. Therefore, double-check this with a simple phone call to your Insurer (and write down the specifics of when you called, who you spoke to and what they said) and then the Doctor’s office will likely play a significant role in helping you obtain the PA.
- Know your Insurer’s Laboratory Policies re: Blood/Urine Tests, X-Rays and Colonoscopies. We’ve all had the experience of going to see our favorite Doctor for a check-up and towards the end of the examination he jots down the various Blood and Urine Tests he needs to do and then he says: “Don’t get dressed yet as my Nurse will come in to take your Blood and Urine.” In the old days, this was fine but nowadays we Patients are Consumers who have contracts with Health Insurance Companies who have made specific arrangements with various Laboratories for these Tests so that they are Cost-Effective for all parties involved. Many of these Labs are also national chains and thus they are usually located somewhere reasonably convenient for anyone to get to. Therefore, if you acquiesce and let your favorite Doctor do the Tests, it will cost you a significant amount of money. The appropriate response is: “Doc, my Health Insurance Company requires me to have all of my Laboratory Tests done at one (1) of three (3) Labs so I would greatly appreciate if you would write me a prescription for the Lab Tests and I promise I will get them done by the end of the week.” Doctors now understand this so you shouldn’t have a problem. This same scenario could also present itself with respect to simple X-rays. Therefore, as a Patient you must be cognizant of the arrangements made by your Insurer prior to your Doctor’s Appointment.
Emergencies often trump all logic and reasonableness so your best bet is to plead “Emergency” when the Medical Bills come in and financial adjustments have not been made to account for your emergent circumstances. Most Insurers, however, will try and work with you since it is not an everyday occurrence and they realize what you were up against. Although, some (even those who wind up accommodating you) will absolutely not work with you (at least at first) citing “rules are rules” and in those cases you must bite your tongue and suppress every animalistic impulse to want to travel through the phone line and strangle this dispassionate customer service person and SMILE and say: “Thank you for your input, may I speak to your Manager?” Then carve out a few hours of your day and enjoy surfing the Web while you get transferred to 10 different people each of whom you must repeat the entire story to and you must do so with the same “innocence” and upbeat tone of voice as if you have been wronged so egregiously that you have all the time in the world to set things straight. I have just described my last Tuesday, by the way!
Where it gets complicated is with respect to Procedures such as Colonoscopies and Endoscopies because these Procedures usually produce Medical Bills from a few different sources (e.g., the Doctor, the Facility, Anesthesiologist and Laboratory) and while it would seem logical that your Insurer would cover all of these different “Sources” under an Umbrella-type of theory, that just isn’t usually the case. In fact, it has been my experience that after speaking to an Insurer representative I must weigh the different cost options of having the tests down at different facilities for lower costs vs. wanting my Gastroenterologist of 25 years being the Doctor performing the Endoscope exam. Sometimes these situations work themselves out when you get so sick that you must be hospitalized as having diagnostic tests like these performed while classified as an in-patent in a hospital falls into its own “hospital category” within your Insurer’s policy. But with Doctors advocating that Patients get tests like Colonoscopies (or a Mammography) routinely after a certain age as a preventive course of action, the in-patient solution is not available. Therefore, call your Insurer and ask them to go over ALL of the Costs you will be responsible for when you have this type of invasive exam. You should also tell them about your preference to have your Gastroenterologist of 25 years performing the Endoscope, for example, as he has been inside your body so many times that it will be cost effective in the long run as he will undoubtedly pick up on any problems you might have with much more certainty than would some other perfectly qualified Doctor who simply is not at all familiar with your complicated case of Crohn’s Disease (which is my situation).
14. Behavioral Health Benefits are usually handled differently by your Insurer. Keeping everything above in mind you must also be aware that when you are seeking Mental Health Benefits from your Insurer that there might be different rules and procedures you must follow. More specifically, some Insurers subcontract out this aspect of your Insurance Coverage to “niche” Mental Health Insurance Companies and thus there might be differences regarding PAs, submitting Receipts, In and Out of Network Physicians, etc. It seems unfair that your Insurer can unilaterally make these changes such that they will affect your bottom-line before you have an opportunity to modify your behavior to be in accordance with the new procedures but often times they do make these types of changes and whether or not they are permitted to do so under law is irrelevant. You just have to learn to “roll with it” as a chronically ill Patient.
Anticipating the “unfairness” frequently demonstrated by Insurers is similar to teaching a Teen who aspires to obtain a Driver’s License. More specifically, I had this conversation with my then 16-year old nephew while I was driving and he was sitting shot-gun as we waited for the light to change from Red to Green at a busy 4-way intersection. He watched me look all 4 ways and then when the light turned Green I slowly moved forward but AGAIN looked all 4 ways. He questioned why I AGAIN looked all 4 ways when I clearly now had the “right of way” with the Green light and I explained to him that even though I had the “right of way” if one of these other drivers ran through their red light and hit me it wouldn’t matter much who was right as he and I would probably be dead! I told him I know some very good lawyers but they are not much help to us when we are 6-feet under. He laughed but then I got serious and told him that people make honest mistakes and sometimes the consequences are irreparable such as in a tragic Car Accident. This is why I always look and even go so far as to “anticipate” the mistakes of other drivers so that I have an “escape” plan ready in my mind. This finally made the appropriate impression on him and it is exactly what I am referring to regarding Health Insurers and the unfair seemingly unilateral changes they sometimes make. In that regard, you should almost “anticipate” unilateral changes especially for potentially expensive medical/behavioral health services and simply call your Insurer and ask about their current rules and procedures regarding this contemplated service. Remember, “roll with it.”
15. Become Familiar with your Insurer’s Website but: You must understand that the Insurer sometimes makes changes that are not noted on their Website for a few days or sometimes they are never noted on the Website. There is no intent to deceive here it is just human nature as Insurers can’t always keep up with the specificities of their Medical Provider Contracts they have with, for example, the different Physical Therapists. Nevertheless, I have found Insurer websites to be excellent resources for tracking Submitted Claims and obtaining Explanation of Benefits forms (“EOBs”). This helps fill in the gaps in your paper-trail account of what has happened to you in the event you must do so for a Disability Benefits Insurance Company or simply for your own chronological timeline document you are maintaining as per above.
16. In and Out of Network Physicians. It would seem sufficient to obtain this information from the Insurer’s website and then verify it with the Medical Provider but if it is a new Doctor and the out-of-pocket costs to you could be significant if your Claim was denied, call the Insurer to verify. Additionally, and by no means am I picking on Physical Therapists, but with certain specialties the Insurer can have Provider Contracts with 3 of the 7 Providers at a given Facility but on their website they list the entire Facility as “In-Network.” As a result, I have had the unpleasant experience of performing all of the above due-diligence but then being unlucky by being assigned Physical Therapist #4 who works at the same “In-Network” Facility but who is NOT an “In-Network” Provider with my Insurer. In my situation, I respectfully made my argument with the Insurer and they countered with the Oil-Cartel-like response that they hadn’t updated their website recently and their laziness was now my tough luck. (Naturally, they used more polite and respectful language than that but their argument was in no uncertain terms, “too bad.”) Hence, try to envision every possible way an Insurer can bully you and then be pro-active to account for that possibility in a “reasonably foreseeable” manner. Don’t forget, Insurers are often large corporations focused on maximizing Shareholder Value thus any approved Claim is counter-intuitive toward their bottom-line financial goals. Yes, they operate within a heavily regulated Industry so the provision of Quality Patient Care is certainly a major factor which they consider in the Claim Approval Process but they are in business to make money and every time they approve a Claim they conceivably make less money. Try and understand this “conflict of interest” mindset and it will help you take a more pro-active stance when you interact with your Insurer.
17. Use Faxes as a way to Communicate in Crises with your Doctors and also to provide “Wellness” Status Updates. Whether you are seeking an appointment, phone call or medications, a Fax is an excellent way for you to help your Doctor help you by creating a paper-trail for him or her such that they can attend to your needs expeditiously. Try to keep it brief but informative as any other usage could be construed as taking advantage of a captive audience. Faxes can also be used as possibly the least intrusive (and thus most time respectful) method to provide a Status Update on how you are doing with a new Treatment regimen. Notwithstanding the foregoing, don’t assume that every Fax is read by your Doctor as they get inundated with different communications and your Fax may slip through the cracks. Therefore, if you haven’t heard anything within 24-48 hours and you specifically needed to be contacted within that time frame, place a polite follow-up call to the support staff asking them if your Fax was received and read. Most importantly, if your matter is NOT URGENT, denote that on the Fax as well so that the support staff can appropriately prioritize all documents which must be reviewed by the Doctor on a “triage” basis. You will appreciate this gesture in the future when you do have an Emergency and other Patients have taken the time to explain that their current matter is not urgent.
18. Have Your Doctors Call Ahead When You Must go to the Emergency Room (“ER”). Our Healthcare System is in such chaos that too many people use the ER as their resource for Primary Care. I can’t sit in judgment of those folks because they usually are the Patients who can’t afford Health Insurance and desperate times make for desperate measures. I, on the other hand, only go the ER when I feel as if without Hospital treatment I could die or the Pain is too much for me to bear and I need intravenous medication. In any event, however, I have found that my ER experiences go much more smoothly when I call my Internist or Gastroenterologist and politely ask him or her to call ahead for me so that the ER Doctors are expecting me and so that they also know what medications and tests to possibly give me. Since ERs typically operate on a “triage” basis, you must understand, however, that your Doctor calling on your behalf will not get you prioritized treatment for Pneumonia when the ER is already faced with several Car Accident and Gun-shot Victims. But I have found that as soon as my Doctor’s name is associated with me and my Case File, the sooner I get “recognized” by the ER Doctors. Then I trust that the “triage” system will get me Treatment in due time.
19. Use only One (1) Credit Card for your Pharmaceutical Charges and try and use the one with the best “Carrying” Interest Rates. Chronically ill patients typically take several different medications and when they are in Flare-Up Mode they might be taking additional ones and/or experimenting with other drugs prescribed by their Physicians. In an ideal world, I would pay off my entire Credit Card Balance every month (in that same ideal world Alyssa Milano and I would not be sitting here blogging about Healthcare!) but with an exception or two (2), I cannot do so mostly due to the fact that I have accrued Medical and Surgical charges over the past 25 years that have prevented me from having such liquidity at my disposal. This is another reality of living with chronic illness which is not often discussed. While it can be very depressing at the end of each month when checks must be written, it is nevertheless manageable. Accordingly, I try to identify the Credit Card that has the most favorable Interest Rates for Carrying Balances and I give it to my Pharmacy and tell them to ONLY use that Credit Card for drug charges. Since we live in a world that is dominated by Banks and Credit, it is also necessary to reevaluate this situation every six (6) months or so as different Credit Card promotions may warrant a change of Credit Card (assuming you have a few to choose from). Again, this is not at all ideal and it puts you in a very different financial situation than that of your friends and colleagues but there is a way to manage this particular situation. As such, try to isolate each of these “situations” and then address them with intelligence and common sense. Do not get overwhelmed by thinking about the rather large number of “situations” us chronic Patients must deal with because that will only distort the required response to the matter at hand.
20. Chronic Illness, Unpredictable Hospitalizations and Credit Card/Vendor “Minimum Balance Due” “Auto-Pay” mechanisms. In my experience, it is not unusual to suddenly wind up in some Emergency Room and then be admitted to the hospital for a 5-week hospitalization. When this happened in my 20s, it wreaked havoc on my financial obligations and then on my overall Credit Rating. Additionally, I found myself spending a great deal of time after being discharged from the hospital calling up every vendor (e.g., phone, cable TV and utility companies) begging them to delete the “Late Fee” due to my illness and predicament. Back then, the vendors and credit card companies were very accommodating but over the past 15 years or so the Banking Industry has changed dramatically such that when a consumer misses a payment or is late on just one payment, their Credit Rating could be soured for YEARS. Please also keep in mind that my pleas for Late Fee deletions were prior to the Internet being deemed “Safe” for Banking. Thus, now it is relatively simple to stay on top of your financial obligations even as a chronically ill Patient when you use a computer in the hospital. However, you might be too ill to do so and/or you might not have access to a computer while in the hospital. More importantly, Computer Security Experts discourage performing sensitive financial transactions on a “Public Wi-Fi” internet connection such as in a hospital or hotel room. Banking and Credit Card transactions should therefore not be conducted in the hospital unless you absolutely have no other choice. In that regard, in order to at least maintain a solid Credit Rating without risking a computer hacker stealing your identity, I strongly encourage you to set up “Auto-Pay” Minimum Balance mechanisms with ALL of your Credit Cards. You can always pay more when you are feeling better. I also recommend that you set up “Auto-Pay” “Minimum Balance Due” mechanisms for your major utilities/vendors such as Cell Phone, Cable TV, Electric, etc. for the same purposes. If you can’t afford to do this with all of your financial obligations, you must then prioritize and I suggest that Credit Cards always be first due to their impact on your Credit Rating. Next on my list of priorities would be my Cell Phone since it is my link to the outside world when I’m hospitalized or alone at home lying in bed sick. Lastly, you must keep track of all charges to the bank account you are assigning to these Auto-Pay Mechanisms and if your liquidity is so tight that you must monitor the bank account even more closely, I suggest that you become familiar with the day of the month upon which each Credit Card company or vendor debits the bank account with this automatic charge as they typically use the same day every month. This way you can manage your Deposits, Transfers of Funds or even the Borrowing of Money to make ends meet in the most efficient manner for that particular month.
21. Relocation, Patient Records and New Doctors. We may not all admit it, but our chronic illnesses influence our decisions to freely travel and/or pursue a job or career in a different city or Industry. I faced this seemingly harsh reality of chronic illness a few years ago when I contemplated relocating from New Jersey to Los Angeles to more efficiently pursue a career in the Entertainment Industry. While I knew I would only relocate for a specific job opportunity, during the process of contemplating this radical change in my life I also learned that my 25-year familiarity with my Doctors in the New York/Northern New Jersey metropolitan area was serving as a roadblock to one of my lifelong dreams and to potentially fabulous personal and professional opportunities waiting for me in La La Land. For a few days, this completely stifled my forward movement toward this goal of mine and I was actually embarrassed by that. Sure, it’s logical that dependence on Doctors for treatment of a chronic illness over such a long period of time will breed familiarity but it was unacceptable to me that this possibly came at the price of me not pursuing my dreams. After a few days of looking in the mirror and not liking what I was seeing, I decided that I now HAD TO RELOCATE if only to “face this fear” of leaving my “Doctor Comfort Zone” as it had now become an impediment to my lifestyle. Even at the age of 41, I was scared at the prospect of leaving my friends, family and Doctors, but now it seemed so patently obvious that I needed to do this just to “grow” as a person. Therefore, before I even had a Job Offer in Los Angeles, California, I got over this fear by sending out written Patient Records Requests to the Doctors most involved with my day-to-day lifestyle (i.e., Gastroenterologist, Pain Management and Internist). After receiving the Patient Records, I scanned them into my computer and through “word-of-mouth” and Physician Referrals I started to set up “Interview Appointments” with different Los Angeles-based Doctors in these three (3) Medical Specialties. I then came to each of these Doctor appointments with my Patient Records in-hand on both a Thumbnail Drive in digital format and in printed-out paper format and I summarily shared my Case History with these Los Angeles-based Doctors and then we discussed how they would treat me under different circumstances ranging from the norm to emergencies.
I was essentially “interviewing” various Doctors in Los Angeles when I was out there for business after extending my trips using some personal days I had set aside just for this particular purpose. I needed to make sure that my Medical AND Lifestyle Needs would be met and that we (i.e., Patient and Doctor) were a good fit for one another. A Doctor can come highly recommended and even live up to the praise but for whatever reason he or she may not be a good “fit” for you (and you for him or her) and you must recognize that otherwise you will be starting a relationship that is not going to work out for either of you. I had to pay for these Interview Appointments but I deemed it as Research which wound up being time and money well-spent. After settling on Physicians for these three (3) Specialties, I knew that I was then ready to “act” upon my Relocation Plan. Sure enough, once I proved to myself that I was “open” to the relocation experience, I shortly thereafter received an unsolicited lucrative Job Offer from a business colleague who thought of me for a job that I didn’t even know was available. Hopefully, in the not too distant future, this will be much easier to do with the broad acceptance of Electronic Medical Records (“EMRs”) but, as I learned during the aforementioned “Research” process, you will always still need to “kick the tires” personally. Suffice it to say, I learned a great deal about myself during this relocation process and in looking back I think it was all fueled by the confidence I acquired after I had possession and control of my Patient Records in both Digital and Paper formats. Go figure.
22. Smart Phone Memory Chip to carry around Patient Data. With the prices of these types of Mobile Phones becoming more affordable, it is important to have a Memory Storage Card in the Phone in which you can keep some or all of the above documents/files. Since these days we carry around our mobile phones like we do the keys to our homes and motor vehicles, you will then always be able to assist your Doctors in treating you no matter where you are. You would also possibly have Operative Reports and Lists of Medications at your fingertips to assist in your Patient Care. You need not wait for EMRs, as you can utilize presently existing technology to perform the same function. (There are also many Health-related Phone “Applications” which can help you manage your Healthcare needs and Patient records.)
23. Write down Succinct Questions for LMPs/Have Your Doctors Chart your “Orders” when they are making “Rounds” in the Hospital. Doctors don’t have much time to waste as they are affected by the “System” just as much as Patients are so when they come to see you in the hospital or when you have a consultation with them in their office, it is best to come prepared with written out questions as this will demonstrate your respect for his or her time. As a result, you will likely get more of their time but don’t abuse that privilege as some other Patient is always waiting on the Doctor and one day that other waiting Patent will be you. Keep a Pen near your bedside at night in case you wake up with a thought and then simply organize your questions before you meet with the Doctor.
Within the Hospital Environment, a KEY recommendation and Patient Tool is to make sure everything discussed with your Doctor during “Rounds” (i.e., the one time, usually early in the morning, when your Doctor stops by your hospital room to check on your progress and gauge/reevaluate your medications, diagnostic tests, diet, etc.) is subsequently written in your Chart (which is usually monitored by your Nurse) so that when he or she is gone for the day you are essentially “self-sufficient” and need not bother other Doctors or Nurses for medications you are supposed to get but for whatever reason have not been noted in your Chart. I wrote about this in detail in my critically-acclaimed book, “Confessions of a Professional Hospital Patient,” because the quality and effectiveness of the “hospital patient experience” is SO dependent on Patients carving out as much autonomy as possible so that they are less apt to get frustrated in dealing with the bureaucratic hospital chain of command. This can be as simple as making sure your Doctor has written you prescriptions for sleep or anxiety medication, appropriate pain medication, the correct diagnostic tests, etc. The way to do this is to remind the Doctor to WRITE THESE ORDERS ON YOUR CHART and communicate them to your Nurse and then you just need to follow-up with your Nurse shortly thereafter to make sure that these Orders were so written.
You also have to do this in a manner in which you don’t challenge the authority or competency of your Nurse or your Doctor. You can blame yourself for being a neurotic Patient who doesn’t want to have his or her Nurse call Doctors at 1 AM to make sure he can get an Ambien pill to go to sleep. However, in order to be this vigilant, you often have to get up very early in the morning to prepare for 7 AM Rounds and sometimes that just isn’t possible because, after all, you are sick, and you might need to sleep or you might be “out of it” from various medications. So, even I, in my most recent hospitalization approximately six (6) weeks ago, made the mistake of “trusting” the “system” too much when I was too sick and too tired to stay on top of this aspect of my Patient Care. As a Professional Patient, this is something that should never happen to me but there are times when Rounds occur when I am half asleep or I am so ill that it is difficult to exercise Patient Advocacy on my own behalf. Nurses are usually very helpful in this regard and when you feel that you can’t advocate for yourself, just tell your Nurse or write a Note to your Doctor and place it on your Patient Tray the night before.
24. Have a “Go Knapsack”. This sounds like something a “Special Forces Soldier” would have and if someone wants to think that about me, I won’t stop them. However, if your chronic illness leaves you vulnerable to unexpected Emergency Room visits which usually turn into prolonged hospital admissions OR you live in a part of the country where a Tornado, Hurricane, Earthquake or some other Catastrophic Disaster could leave you stranded for the 2 or 3 days it will take for the government to help you (see “Hurricane Katrina”), you need to have a “Go Knapsack” packed with the essential items you will need in the Hospital (or for when you are stuck out on the road) which will make your stay as pleasant and “personable” as possible. The “personable” aspect is important because a hospital is, by design, a cold and unemotional environment (as is the side of the road somewhere) so if pictures of your wife and children motivate you or if the smell of a certain shampoo relaxes you, pack it. Anything you can bring which helps personalize the hospital patient experience (or the Disaster-scenario) should be included in the Go Knapsack. For me, this is usually a certain smelling shampoo which tends to “dampen” the all-too-familiar sterile hospital smell, comfortable slippers, magazines I love but never get to read, my health insurance information, medical history information (see above), etc. Please also tell some close friends or family members where you keep this “Go Knapsack” so that they can bring it to you in the hospital. You could choose to be mysterious about the purposes of the “Go Knapsack” if you think it will help your “reputation” as in: “Dude, I can’t tell you more but if I call you and ask for the “Go Knapsack,” please make sure you get it to me regardless of what Anderson Cooper is saying on CNN. Seriously.” When you do that, I think laying the foundation for the mere possibility that you are in The Special Forces will make everyone forget about your Spastic Colon.
When I lived in Los Angeles, California I put a duplicate “Go Knapsack” in the trunk of my Car due to the ongoing very real Earthquake threat. Given those reasonably foreseeable circumstances, I included 5 days of medications and a few days of Army “MREs” (i.e., “meals ready to eat”) along with other “Survival-type” items in my Go Knapsack. In any event, in this day and age something bad can happen regardless of where you live and therefore I would have a second “Go Knapsack” in the trunk of my Car which is packed in a similar fashion as was my Los Angeles, California Go Knapsack.
25. Participate in Health Care Social Media (“HCSM”). Social Media has become the new “Grassroots” tool for Patients sharing Information and Experiences with other Patients for the betterment of their own Treatment and for a more Efficient Healthcare System such that High Quality Patient Care will soon be available to more people at more affordable prices. But how does an individual Patient participate in this Game-Changing medium? For me, it was as simple as posing a question on Twitter about some side-effects I was having to the “Anti-TNF Agent” Drug I was taking for my Crohn’s Disease. This led me to some recommended Facebook Pages which had additional information and then to various “Patient Community” websites in which I found other Patients like myself going through the same experience and struggling with the same symptoms. As you can’t always believe everything or everyone you come into contact with on the Web (or in real life), I suggest you utilize a diversified approach of an array of these HCSM Patient Tools because after enough “data” comes your way I think you will be able to separate the attention-seekers or those who have other problems driving their Virtual Life from the Credible Patients like myself who are only interested in creating an environment where Patients share Information and Experiences with other Patients for the sole purpose of creating an almost Instantaneous Patient Database which will build niche Patient Virtual Communities based on Illness, Symptom, Medications, etc.
Below is a brief discussion of examples of credible, practical and incredibly useful HCSM Web Resources, which are now readily available to Patients just to get you started. Just like with everything else on the Web, one discovery will lead to another and, before you know it, you will be emailing me about the HCSM Tools you’ve found most helpful which I may not yet know about. I welcome such communications and encourage you to explore the fascinating world of HCSM.
Patients have many options such as Twitter or Facebook where I believe you will gain the most by “engaging” or interacting with other people/patients regarding the “give and take” of Patient Information and Experiences. In Twitter, for example, there is also “Tweet Chats” (i.e., Virtual Conference Rooms) on specific Healthcare topics (or for members of different Disease Groups whether they be Patients, Physicians, Drug Manufacturers, etc.) and they are held at the same time on the same day on a weekly basis. This is a fantastic opportunity to network with people who live with the same challenges you do. There is even a Tweet Chat about “HCSM” “in general” on Sunday Nights at 9 PM EST during which the “Group” discusses three (3) topics which are selected beforehand and moderated by a very competent Medical Professional. I find it to be the most informative “60 Minutes” of media on Sunday Nights and I think the diversity of the “Group” is what makes these HCSM Tweet Chats both enjoyable and thought-provoking because it ranges from Medical Professionals to Patients with Chronic Diseases to Medical School Students yet also includes Caretakers, Hospital Executives, Healthcare Marketers, Technology Experts, etc.
Additionally, the participants are from all over the world and that adds a certain Global Perspective that cannot be artificially replicated. It is important to point out that there are several Countries which have their own HCSM organizations and thus related Tweet Chats and they all seem to go about their business in a harmonious manner. Therefore, it is also advantageous to occasionally participate in the Tweet Chats of the Canadian or Australia/New Zealand HCSM Groups. If you happen to speak other languages, you can participate in the European HCSM, Asia HCSM, Latin America HCSM, France HCSM, etc. Please also note that English Transcripts of each HCSM Tweet Chat are usually available within a few days of the Chat. (The business networking site “LinkedIn” also has HCSM “Discussions” that I have found to be very helpful in researching certain topics. I bring LinkedIn to your attention simply to demonstrate how popular HCSM has become and so that you can see how easy it is to diversify your HCSM efforts.)
There are also Healthcare “Portal” Websites such as WEGO Health (“empowering health activists to help others”), Yahoo Health, AOL Health, WebMD, Discovery Health, CNN Health and The Mayo Clinic Center for Social Media (“MCCSM”) by which you sign up and create a Profile and they go out and get you information they think is relevant to your Healthcare interests based on the Profile information you completed for their website. These Healthcare Portal sites can also be utilized in many other ways such as Research and Social Networking and thus serve as “hybrid” resources but, by definition, they are “portal” because they go to great lengths and, in cases like The Mayo Clinic and Discovery Health, they utilize their tremendous real-life resources and assets to keep you at their website so you never have to wonder if you are missing something. This also includes Blogs written by prominent Physicians discussing current News and Trends in Healthcare.
There are also “Key Word” automated searches whereby you can set up Google or Yahoo to email you, for example, every news story and web item written on Crohn’s Disease, every day. There are alsoFree Subscription-based Yahoo and Google email “Groups” organized by Disease in which people who subscribe pose questions and submit answers or share experiences regarding each other’s queries. This is a very effective way in which to at least observe how others with similar challenges as you handle the problems you encounter. There are few etiquette rules besides the obvious regarding profanity, unnecessarily utilizing the Group for self-promotion and rude behavior is not tolerated but I think there should also be a rule or just encouragement to try and “give” or answer as many questions as you ask.
Podcasting is becoming a more influential HCSM tool as Health Experts (and Advertisers) see the usefulness to this medium in which the listener/subscriber is so interested in the content that he or she seeks it out and is pro-active about subscribing. It’s as if some of these Podcasts will soon be transformed into Premium Satellite Radio and Cable TV-like networks and the viewership/listener-ship is a demographic dream for advertisers who wish to spend their money as efficiently as possible. Usually, these Podcasts emanate from iTunes but my Video Podcast, “The Professional Patient Podcast,” is set up on YouTube on two (2) different YouTube “Channels,” namely, “HealthCareReality” and “ProPatientTV.” There is no reason for why I have it designed this way other than I think YouTube is going to continue to evolve into a very important Video Channel on the Web and I’d like to be a part of its growth.
Podcasting may be the fastest growing area of HCSM so feel free to seek out exactly what you want and enjoy the learning journey. I think my Video Podcast is very helpful to those trying to cope and live with chronic illness but there are so many other areas of Healthcare which are addressed in Podcasting that a Patient would be wise to investigate everything until they are content with their information flow. Personally, I stick with a certain lineup of Podcasts for approximately four (4) months and then I rotate in other Healthcare Podcasts to balance out my knowledge-base. I did this with business magazines/newspapers several years ago after a very successful business colleague explained to a class I was teaching about the benefits of a well-rounded mind in the business world. As a result, he rotated the business magazines and newspapers he read every four (4) months. I thought that was excellent advice and now I am sharing it with you regarding New Media and HCSM but please always include MY Video Podcast in your “rotation” as, after all, every good “Music Mix Tape” has at least 1 (one) cool Frank Sinatra song on it!.
There are also “Patient Virtual Communities” such as CureTogether, DailyStrength, and “PatientsLikeMe.” In the case of “PatientsLikeMe,” their Promise is that they are:
“Committed to putting patients first. We do this by providing a better, more effective way for you to share your real-world health experiences in order to help yourself, other patients like you and organizations that focus on your conditions.”
I think these Virtual Patient Communities will become more popular as Patients become more comfortable sharing their Information and Experiences in HCSM. I see this happening in the same way we have all become less concerned with the downsides of performing banking transactions or paying bills on the Web. Once that becomes more widely accepted, the power of HCSM will become formidable and then Healthcare will finally be transformed into a competitive global business which benefits from all of the technology that is available.
Many Hospitals have also gotten on board with HCSM and they have done so in a variety of ways including Patient Blogs and Video Testimonials from Patients about either their experiences there as Patients or their descriptions of their particular surgery at that hospital. Thus, if you are contemplating Knee Replacement Surgery and you had a choice of a few different hospitals or you are a bit apprehensive of the surgical experience then these types of detailed Patient Video Testimonials can be excellent motivators and they do a great job at also eliminating the “unknown” which is what scares us all when we contemplate surgery, anesthesia, recovery, pain, etc. Elective Surgery Providers are also using Patient Blogs and Patient Video Testimonials with Facelifts, Breast Implants, etc. and just like hospitals they are putting these Blogs and Videos up on their websites, their Facebook Pages, and on other HCSM “vehicles” like Posterous, Ning, Tumblr, etc. Oncologists utilize Patient Endorsements to, for example, convey the differences between Prostate Cancer Treatments, as these Prostate Cancer Patients have options and often times they are misinformed about the details. These Patient Videos and Blogs helps the Patient become better informed and that makes for a smoother and more productive in-person Consultation.
Clearly, just because you can’t see the Doctor for a few days or weeks, there is plenty you can still be doing in HCSM even if it is just helping a Patient by sharing Information or Experiences which you possess that might be of help to him or her. One day such selfless contributions to HCSM will be rewarded to you when it is YOU seeking the Information. Moreover, the inefficiencies of our present Healthcare system are being exposed through the creation of these almost instantaneous Databases developed by Patients for Patients in HCSM. This results in Patients who are better educated about their own conditions, symptoms and options so that when they interact with their Doctors they do so in a much more focused, productive and succinct manner. In turn, this will make Healthcare become a most efficient Industry which can then compete on a global scale. The Oil-Cartel-like vice grips of the more greedy of the Health Insurance Companies will then be broken and Hospitals and Medical Professionals can then get back some leverage and share the gains with Patients. The end result will be a sound Healthcare Industry focused on Patient Care as opposed to the understandable corporate objectives of Health Insurers whose ultimate accountability is to maximizing Shareholder Value and not to Improved or more Widely Accessible Patient Care.
I trust the foregoing has provided you with some perspective on the Patient Tools that are available to you NOW which will help you battle your chronic illness most efficiently and effectively. These are all based on my experiences over the past 25-30 years battling the chronic, incurable and auto-immune, Crohn’s Disease. Therefore, this is not some “academic” exercise as I’m living it, wrote a book about it and presently share my experiences via Podcasting and Blogging for the benefit of other Patients who want to learn how to Live, Love and Laugh with Chronic Illness.
