PROJECT(MANAGEMENT(GUIDE( for(inpatient,(rehab,(&(nursing(home(stays(!!! Curated!by!the!! Patient'Empowerment'Committee' of!the!!!

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1 PROJECT(MANAGEMENT(GUIDE( for(inpatient,(rehab,(&(nursing(home(stays(!!! Curated!by!the!! Patient'Empowerment'Committee' of!the!!!!!

2 ( PROJECT(MANAGEMENT(GUIDE( for(inpatient,(rehab,(&(nursing(home(stays( ( 1. Hospital(&/or(Rehab(or(Nursing(Home( Admission( 2. Staying(on(Top(of(Things( 3. Preventing(Medical(Errors( 4. Communicating(your(Concerns( 5. Understanding(Diagnosis(and(Treatment( Options( 6. Discharge(&(Home(Care(! This!Guide!was!prepared!courtesy!of!materials!provided!to!the! Wellness!Foundation s!empowered!patients!committee!by:! Patricia!J.!Skolnick,!Finding'Your'Way'through'a'Safe' Medical'Journey:!An!Advocate s!guide!to!preventing! Harm;!A!Publications!of!Citizens!for!Patient!Safety! Dr.!Julia!A.!Hallisy,!Empowered'Patient'Hospital'Guide' for'patients'and'families,'an!empowered!patient! Publication!

3 Empowered Patient Hospital Guide For Patients and Families Updated by Dr. Julia A. Hallisy An Empowered Patient Publication

4 FINDING YOUR WAY THROUGH A SAFE HEALTHCARE JOURNEY AN ADVOCATE'S GUIDE TO PREVENTING HARM A PUBLICATION OF CITIZENS FOR PATIENT SAFETY

5 ! SECTION!1:!! Hospital!&/or!Rehab!or!Nursing!Home!Admission!!!! Information*you*and*your*patient*advocate*should*bring*with* you:* * Choosing*an*Advocate*and*Preparing*Documents* Responsibilities*of*an*Advocate* Primary*Care*Summary*for*Emergency*Departments* (includes*emergency*contact*person/patient*advocate* contact*info)* Medication*List*or*Medication*Wallet*Card* Medical*Devices*List*(if*applicable,*e.g.*Pace*Maker,* artificial*hip*joint,*etc.)* Medical*History* Immunizations* Family*Medical*History* Document*Locator* Working*with*Your*Hospital*Team* Understanding*Informed*Consent*

6 CHOOSING AN ADVOCATE and PREPARING DOCUMENTS I HAVE CHOSEN my advocate (or advocates). My advocate is. The person I have chosen can be readily available. My advocate has his/her own means of transportation. My advocate is comfortable speaking to doctors on my behalf. I HAVE DISCUSSED my health care wishes with my advocate(s). I HAVE DOCUMENTED my wishes using: A Medical Power of Attorney form (my named agent can be different from my advocate). My agent is:. An Advance Directive (living will). A HIPAA Authorization form (allows doctors to share information with your advocates). A Do Not Resuscitate Order if applicable. I HAVE GIVEN my advocate(s) a copy of my documents and I have the original documents in a safe location. My advocates know where to find my original documents, if needed. My original documents are located:. An Empowered Patient publication, used under license by The Empowered Patient Coalition. Copyright 2009 Dr. Julia A. Hallisy and Helen W. Haskell. For more information please visit

7 Why Advocates are So Valuable! A good advocate will always: Patricia J. Skolnik 2011 Page 123 of 125

8 Please remember to make a copy of this document so you may use it multiple times. Primary Care Summary For Emergency Departments Please complete this form with the Primary Care Physician for the patient for whom the Journal has been created. Please note on this page if anyone other than the PCP has provided this information. Patient Name: Date of Birth: Blood Type: Emergency Contact: Phone: Healthcare Agent Name (if any): Under What Authority? Attached? Y N (E.g., Medical Proxy Decision-Maker, Medical Power of Attorney, Financial Power of Attorney, Guardian) Primary Care Physician Name: Date Form Completed Office Phone: Emergency Phone: Allergies to Medications? Yes No Other Allergies? Yes No Describe: The patient is currently taking these medications: Name of medicine Dosage How Often? Date Started (e.g. 5mg) (e.g.2x/day) Name of medicine Dosage How Often? Date Started (e.g. 5mg) (e.g.2x/day) The patient currently has the following conditions: The patient has had the following procedures/conditions: Hearing problem MRI Vision Problem Anesthesia Palliative therapy Mental illness Angioplasty Fear of enclosed spaces Reconstructive surgery Pacemaker or implanted cardioverter/defibrillator Blood transfusion Sepsis Trouble remembering things Bone density scan Sonogram Chemotherapy/radiation therapy for cancer Bypass Stent Eating Problems Colonoscopy Transfusion Problem moving/standing/bending CT scan Transplantation Arthritis, pain in joints Dialysis Upper/Lower GI series Alcohol use EKG X-Ray Non-prescribed medication/drug use Hormonal therapy Other: Other: Immunosuppression Other: Other: Joint replacement Other: Patricia J. Skolnik 2011 LASIK Page Other: 3 of 122 Lower GI series Reproduction is prohibited without written consent of Patricia J. Skolnik

9 GENERAL'PATIENT/MEDICATION'OVERVIEW' 'CHECK'BOTH'SIDES' Last'Updated:'''''''''''''' ' Name:) DOB: )Phone(s): ) ) Emergency)Contact)Name: Relation: Phone(s): ) ) KNOWN' ALLERGIES ' Item/Medication' ' ' Date' ' ' ' ' '''Symptoms' ' ' ' ' ' ' ' ' ' ' CARE'PROVIDERS' Provider'Name' ' ' ' Specialty' ' ' '''''''''''Phone'Number' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' MEDICATIONS' Drug'Name' ' Dose' ' 'Prescriber' ' Directions' ''''How'I'Take'It' Where'I'get'it*' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' SUPPLEMENTS'AND'MORE' Examples:)Benadryl,)ibuprofen,)aspirin,)TUMS,)analgesic)rubs,)laxatives,)vitamins,)herbs,)antibiotic)creams ) Supplement' ' ' Dose' ' ' ' Prescriber' ' ' How'I'take'it' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' *Store'or'Website' ' ' Phone'or'Address'(or'URL)' ' ' ' ' ' ' Courtesy)of)Rick)Powis,)Boothbay,)Maine)

10 MEDICATION'RECORDS' ' Remember:' 1. Patient)medications)are)one)of,)if)not)THE)most)important)part)of)your)medical)records.)' ) 2. You) Own )your)medication)record.' 3. You)have)a)great)deal)of)control)over)what)is)included)in)your)medication)record.' 4. Patient)medications)are)on)file)in)a)variety)of)places)that)are)NOT)connected)or)updated) appropriately.)your)pharmacy)is)happy)to)keep)an)upsdated)record)of)all)your)meds)&) supplements)for)you)(no)matter)where)they)are)purchased).)you)can)ask)for)a)copy)at) any)time.)' 5. You)must)be)aware)of)what)data)your)medication)record)contains)and)update)it) appropriately.' 6. You)must)keep)you)personal)medication)form)upStoSdate.' PROVIDER'CONVERSATIONS'&'QUESTIONS' 1. New'Medication:' What)is)it)for?' How)do)I)take)it?' How)long)do)I)take)it?' What)results)should)I)expect?) How)soon)should)I)expect)results?) How)do)I) test )for)results?) What)are)the)common)side)effects?) Is)this)medication)in)place)of)another?) Are)there)any)interactions)with)other)meds,)foods,)or)supplements)that)I)should)be) aware)of?) 2. Current'Medication'Review:' Does)my)list)match)your)list?) Does)it)include)treatments)prescribed)by)other)providers?) May)we)review)what)each)medication)is)for?) Are)my)results)in)line)with)what)should)be)expected)from)current)medications?) Are)there)any)medications)I)can)discontinue)without)adverse)effects?) Are)any)of)my)medications)drugs)that)you)would)not)prescribe)today?) 3. Review'of'any'Allergies'or'Reactions' May)we)review)any)reactions)I)am)having)to)any)of)the)medications)or)supplements) I m)taking?) 4. Are'there'any'Questions'I'should'have'asked'that'I'haven t'asked?' Courtesy)of)Rick)Powis,)Boothbay,)Maine)

11 Medication Wallet Card Detach this card and keep it in your wallet for reference. Full Name: Street Address: Home Phone: ( ) Cell Phone: ( ) Why did you change/ discontinue? Date you stopped taking it Date of Birth: / / Gender: M F Emergency Contact Information Home Phone: ( ) Cell Phone: ( ) Relationship to Patient: Is this person authorized to share your medical information? Yes, allow info but not decisions Yes, allow both info and decision-making No, simply alert the person of a problem Primary Care Physician: Name Phone: ( ) Pharmacy Pharmacy Name: Phone: ( ) Allergies To Medications? Which Medications? To Foods? Which Foods? Notes: Date you started taking it Who prescribed it? Why do you take it? Dose Name of Medication (e.g., 100 mg, 2x per day) Date This Card Was Last Updated: / / Patricia J. Skolnik 2011 Page 70 of 125 Reproduction is prohibited without written consent of Patricia J. Skolnik

12 Medical Devices (Pacemakers, Insulin Pumps, Breathing Machines, Feeding Machines, etc.) Device Type: Settings: Indication: Date Initiated: Doctor: Hospital: Device Type: Date Initiated: Settings: Indication: Doctor: Hospital: Medical Devices (Pacemakers, Insulin Pumps, Breathing Machines, Feeding Machines, etc.) Device Type: Date Initiated: Settings: Indication: Doctor: Hospital: Device Type: Date Initiated: Settings: Doctor: Indication: Hospital: Medical Devices (Pacemakers, Insulin Pumps, Breathing Machines, Feeding Machines, etc.) Device Type: Date Initiated: Settings: Indication: Doctor: Hospital: Device Type: Date Initiated: Settings: Indication: Doctor: Hospital: Medical Devices (Pacemakers, Insulin Pumps, Breathing Machines, Feeding Machines, etc.) Device Type: Date Initiated: Settings: Indication: Doctor: Hospital: Device Type: Date Initiated: Settings: Indication: Doctor: Hospital: Patricia J. Skolnik 2011 Page 40 of 125 Reproduction is prohibited without written consent of Patricia J. Skolnik

13 Medical History Condition AIDS/HIV Positive (circle one) Angina Anticoagulation Therapy Anxiety Appendicitis Arthritis Asthma Bipolar Disorder Bladder Problems Bronchitis Cancer Cataracts Cerebral Palsy Cerebrovascular Accident/Stroke Clotting Problems Compression Fracture(s) Congestive Heart Failure Constipation COPD Depression Developmental Disability/Delay Diabetes Type Diverticulitis Dizziness Emphysema Epilepsy Fainting Fibrocystic Disease Fracture(s) Gall Bladder Disease Surgeries Urinary Tract Infection Urinary Urgency Other Other Other Other Other Date of Onset Condition Gastro-esophageal Reflux Disease Gastrointestinal Bleeding Glaucoma Headache Hearing Impairment Heart Murmur History of Spinal Surgery High Cholesterol High Blood Pressure Hypoglycemia Incontinence Irregular Heartbeat Irritable Bowel Syndrome Traumatic Brain Injury Jaundice Joint Replacement Low Blood Pressure Mitral Valve Prolapse Multiple Sclerosis Pacemaker Pneumonia Pneumothorax Prostate Problems Pulmonary Embolism Sexually Transmitted Disease Seizures Shortness of Breath Transient Ischemic Attack Thyroid Disease Valve Replacement Supraventricular Tachycardia Tuberculosis Ulcer Date of Onset Patricia J. Skolnik 2011 Page 41 of 125 Reproduction is prohibited without written consent of Patricia J. Skolnik

14 INFECTIOUS DISEASE Chicken Pox Measles Pertusiss/Whooping Cough Polio Hepatitis Mumps C. diff MRSA Pneumonia Rubella Other Other Colonoscopy Lipid Panel Mammogram PSA Thyroid Other Other Other Preventive Testing Date 1 st 2 nd 3 rd 4 th Miscarriage Complications Pregnancy Date Patricia J. Skolnik 2011 Page 42 of 125 Reproduction is prohibited without written consent of Patricia J. Skolnik

15 Immunizations Immunization Initial Booster 1 Booster 2 Booster 3 Age Date Age Date Age Date Age Date Chicken Pox Diphtheria Hepatitis A Hepatitis B HIB HPV Influenza Measles Meningitis Mumps Pertussis/ Whooping Cough Pneumococcal Polio Rotavirus Rubella Shingles Smallpox Tetanus Tuberculosis Typhoid Patricia J. Skolnik 2011 Page 43 of 125 Reproduction is prohibited without written consent of Patricia J. Skolnik

16 Family Medical History Spouse Mother Father Sibling(s) Grandparent(s) Children Enter age of relatives If deceased, enter age at death and cause Check All That Apply Alcoholism Asthma Cancer Diabetes Dialysis Type Developmental Disability Emphysema Gastrointestinal Disorders Glaucoma Heart Condition Hepatitis High Blood Cholesterol High Blood Pressure Kidney Disease Multiple Sclerosis Seizures Smoking Stroke Thyroid Disorder Transient Ischemic Attack Tuberculosis Tumors Site(s) Other: Other: Patricia J. Skolnik 2011 Page 44 of 125 Reproduction is prohibited without written consent of Patricia J. Skolnik

17 Document Locator Be as specific as possible; describe the location, format, color, etc. of important documents. Insurance Documents: Birth Certificate: Statement of Wishes (Use of Five Wishes or other document): Deeds and Proof of Ownership: Marriage License or Certificate: Social Security Card: Military Records: Checking Account(s): Savings Account(s) Mortgage Documents: Tax Returns: Will(s) and Trust(s): Pre-Nuptial Agreement: Business Papers: Patricia J. Skolnik 2011 Page 81 of 125 Reproduction is prohibited without written consent of Patricia J. Skolnik

18 Death Certificate(s): Warranties: Divorce Decree: Passport(s): Investment Account(s): Household Accounts (utilities, phone, cell phone, water, etc.) (Fill Name in Blank) has the list of all of my passwords for online transactions Notes: Patricia J. Skolnik 2011 Page 82 of 125 Reproduction is prohibited without written consent of Patricia J. Skolnik

19 WORKING WITH YOUR HOSPITAL TEAM When you are admitted, tell your bedside nurse that you are interested in patientcentered care and that you would like to meet with the team during daily rounds. Have your questions ready: What is the care plan for the day? Are doctors ordering any new medications or tests? How can the patient or advocate help? Have an advocate at the hospital who can speak to the doctors during daily rounds if you are unable to do so. Remember that staffing may be lower on weekends and holidays, so schedule elective procedures at other times. These are especially important times to have an advocate with you. Write things down in a patient journal (a free patient journal can be downloaded at www. EmpoweredPatientCoalition.org/publications) to help you or your advocate stay up-to-date on the most recent plan for care. Ask to be notified if there are any changes in the plan. Always have a way to contact your surgeon, or their answering service, in case of an emergency. Ask your surgeon if he will be staying in town for the first few days after your procedure and how he can be contacted in an emergency. If another doctor will be on call for him, be sure you have his or her full name and direct contact number. Know that you can always request a consultation with a more experienced physician either in person or by phone. Ask specifically for the attending physician if you have serious questions about the decisions made by residents. Be sure that the person who is contacted is an attending physician and write down her name in your patient journal. If your hospital has an intensive care unit you may be able to consult with an intensive care specialist, or intensivist, for serious situations. If the staff does not agree with you about the need to contact the attending physician, and you believe that you or a loved one is being placed in jeopardy, write a note explaining that you requested, but did not see, the attending. Sign and date your note, ask for a copy, and request that it be added to your medical record. Ask if your hospital utilizes Rapid Response Teams (RRT). A RRT is a group of highlytrained hospital staff members who respond to a sudden decline in a patient s health. Usually, the nurse calls the team but in some hospitals, patients and their advocates can call the team directly (This type of program may be called Condition H for Help. ) Ask if patients can call the team and, if so, be sure the number is posted by your phone. Empowered Patient Hospital Guide for Patients and Families 11

20 MEANINGFUL INFORMED CONSENT I HAVE HAD a detailed discussion with my doctor on why a procedure is needed, the risks and benefits, and the alternatives. I HAVE RESEARCHED my doctor s credentials with the medical board and other Internet sites to confirm licensure, specialty and discipline history. I KNOW who will be performing my procedure, their experience and training level, and how many times they have successfully performed this procedure. I HAVE LEARNED the potential complications of the procedure, and how commonly they occur. I HAVE ASKED what to expect during recovery. I HAVE ASKED how effective the procedure is at accomplishing its intended goal. I HAVE REQUESTED that my procedure be scheduled for a day that does not immediately follow a night when my doctor is on call, and have asked to be informed if the doctor has been awake for more than 22 of the 24 hours before my procedure. I HAVE ASKED if I have any pre-surgical responsibilities (such as taking antibiotics, washing with special soap or stopping any medications). MY CONSENT was obtained by the doctor who will be performing the surgery and not by other staff members. I HAVE ASKED if my doctor is delegating any part of my surgery to an assistant. I know if any students or trainees will be operating on me. I HAVE INFORMED my surgeon that I routinely request copies of my Operative Report and I have asked if my surgeon will be listed as the Responsible Surgeon. An Empowered Patient publication, used under license by The Empowered Patient Coalition. Copyright 2009 Dr. Julia A. Hallisy and Helen W. Haskell. For more information please visit

21 Chapter Three INFORMED CONSENT Hospitalization requires that patients give their consent to be treated by the hospital staff. Additional consent is necessary for invasive procedures and surgeries. It is important to realize that the consent process is much more than a form with a signature. Aside from representing a moral, ethical, and legal requirement for providers, it recognizes and protects a patient s right to know what is being done to their body. Informed consent allows for patients to ask questions, to understand the answers they are given, and to know who will be performing their procedure. TRUE INFORMED CONSENT includes the following: Consent should be obtained by the doctor who will be performing the procedure as recommended by the American Medical Association (AMA). The informed consent process should not be delegated to other staff members who may not be able to answer all your questions. The doctor should have a thorough discussion with the patient on the details of the treatment or procedure, why it is needed, any reasonable alternatives, the risks and benefits, side-effects and what will happen if the patient does not have any treatment at all. UNDERSTANDING YOUR ADMISSION FORM can be a challenge but knowing what to look for will make the process much easier. If you are in a teaching hospital, it is likely that your admission form will state you will be cared for by medical students, interns, residents, and fellows who are supervised by an attending physician. If you have any reservations about being seen by students, you may want to consider using a private hospital. The form may state that the interns, residents, or fellows will be under the direction or supervision of an attending physician. You need to ask the attending physician personally how involved he plans to be in your care and how he can be reached if there is a problem. If wording on the admission form makes you uncomfortable, ask if you can make changes or draw a line through the parts that are troubling you. Be sure to initial any changes. Some institutions will not allow this, so ask about the policy. The admitting office should be able to find the answers to any questions you may have. UNDERSTANDING YOUR SURGICAL CONSENT FORM will be much easier if you meet in advance with the surgeon who will be performing the procedure before you are expected to sign the form. Here are questions to ask and what you need to know: Empowered Patient Hospital Guide for Patients and Families 13

22 Ask about the identities and experience level of all people who will participate in your surgery. You should know if any residents or students will be directly involved in the operating room. How many procedures like yours have they completed? How much supervision will the lead surgeon provide? Be specific about the amount of direct supervision provided by your surgeon. Will she be present for the entire surgery from start to finish? Or, will she supervise indirectly or for only part of the procedure? Time should be set aside for you to meet with your anesthesiologist. Ask if the anesthesiologist is board-certified and if he will be physically present and responsible for your entire case. (Please see Chapter 6 for a detailed discussion on anesthesia). Ask if your surgeon will be using the services of an assistant surgeon. Which parts of the procedure will be handled by the assistant surgeon? Will there be any non-medical personnel in the operating room such as sales representatives? Their presence could be a source of infection, a distraction, or it could mean that the surgeon is using a new piece of equipment or an unfamiliar technique. Plan to request a copy of your operative report from the hospital and confirm with your surgeon when you sign the consent form that he will be listed as the responsible surgeon in the report. The lead surgeon is generally listed as the responsible surgeon. An assistant surgeon or surgical resident is usually listed on the operative report as the assistant surgeon. THE COEXISTENCE OF MEDICAL EDUCATION AND PATIENT CARE Does this mean that patients should never agree to allow a resident to use their surgery as a teaching opportunity? If this were to happen, doctors would never acquire the hands-on experience they need to become skilled at performing surgery. If physicians are forthcoming and transparent about the members of the surgical team, an overwhelming majority of patients would willingly agree to participation by residents. Here is what patient s need: To be informed in advance about all the members of the surgical team. To clearly understand who is the lead surgeon. To know the names, titles, and experience levels of the residents involved in their treatment and surgery. To know how much responsibility will be delegated to residents and assistants. To know how much direct supervision will be provided by attending physicians or lead surgeons. Continued involvement by surgical residents during the recovery period, which inspires confidence in the teaching system. 14 EmpoweredPatient Hospital Guide For Patients and Families

23 SECTION(2:( Staying(on(Top(of(Things( *! Information*you*and*your*patient*advocate*should*track*and* project* manage *while*you*are*an*inpatient:* Working*with*the*Hospital*Staff* Your*Medical*Record* *Bring*your*current*medical*records*&/or*get* a*copy*at*the*hospital/institution.*review*it,*check*for*errors,* request*copies*of*all*charts*and*procedures*during*your*stay* Example*of*PatientLSpecific*Instructions*(for*when*you*can t*be* there,*or*for*handoff*to*other*care*team*members)* Set*Goals*for*the*Patient*and*the*Care*Team* * KEEP*A*PATIENT*JOURNAL,*include:* Patient*&*Family*Rounding*Daily*Summary* Inpatient*Daily*Progress*Sheet* Event*Reporting*Log* Diagnostic*Studies* * THINGS*TO*MONITOR* Infection*Control*&*Prevention* Warning*Signs*of*a*Deteriorating*Patient* Ensuring*that*the*Patient*can*handle*Activities*of*Daily*Living*

24 WORKING WITH THE HOSPITAL STAFF KNOW HOW to contact your attending physician or surgeon in an emergency. KNOW THE NAME of the charge nurse and nurse manager for your unit. KNOW that you can ask any staff member about his job title or experience. KNOW that a more experienced physician can always be consulted, even in the emergency room setting. ASK if the hospital has a Rapid Response Team and if patients can call the team directly. BE PREPARED to speak to the staff at daily rounds or have your advocate do so. ASK SPECIFICALLY about your Plan for the day so you will be aware of the daily treatment plan. ASK TO BE NOTIFIED if your treatment plan changes in any way. BE AWARE that house staff (resident physicians) can change your treatment orders at any time. REALIZE that low staffing levels in a hospital can affect your care. Do not hesitate to notify the nurse manager or nursing supervisor if you observe inadequate staffing levels. BE ON THE LOOKOUT for staff fatigue. Don t be afraid to ask how long doctors or nurses have been on duty. An Empowered Patient publication, used under license by The Empowered Patient Coalition. Copyright 2009 Dr. Julia A. Hallisy and Helen W. Haskell. For more information please visit 9

25 Chapter Four YOUR MEDICAL RECORD THE PLAYBOOK OF YOUR LIFE Even with the recent health care reform mandate for doctors and hospitals to implement electronic medical records (EMR), the recommendation that patients begin using personal health records (PHR), and the ultimate goals of integrating all of our health information into an accessible electronic health record (EHR) and then sharing that record through a health information exchange (HIE), few patients give much thought to the written records that chronicle their health care experiences. Most patients don t realize that the record is the point of convergence of every single piece of crucial data relating to their health. Many people assume that their medical record is inaccessible to them, but today s patients have unprecedented legal access to their medical records. You should read through your medical record as it may give you a completely new perspective on your treatment. It is important for patients to take the time to maintain a complete and accurate personal medical history. A medical history should be a living document that patients manage themselves and keep accessible and updated. Just as hospitals keep a medical chart when you are an inpatient, patients need to keep their own records as well. A complete personal history is the foundation of your medical record and a form is included in the free Empowered Patient Journal available at to use as a starting point. Keep the completed form handy as you will likely be asked about your history many times during a hospital stay. Important considerations about your medical records: HIPAA PRIVACY RULE AND MEDICAL RECORDS In most situations, you are guaranteed access to your medical records under the federal Healthcare Insurance Portability and Accountability Act, or HIPAA, for short. (Remember, there may be exceptions for mental health records). What I need to know: One of the rights HIPAA gives you is the ability to inspect, review, and receive copies of your medical records. If you are denied access to your records, it may be a violation of federal law. If you find an error in your medical record, contact the hospital or provider. If they agree that there is missing or erroneous information, they are supposed to make corrections. If they do not agree with your request to make changes, you have the right Empowered Patient Hospital Guide for Patients and Families 15

26 to submit a brief statement of disagreement to be added to your record. Be sure to date the letter and keep a copy. A provider may share medical information with a relative, friend, or other person of the patient s choosing. If the patient becomes unable to make their own decisions, these oral agreements to share information may not be continued. This is why you need signed documents naming a legal agent. VIEWING MEDICAL RECORDS WHILE IN THE HOSPITAL is both possible and appropriate. Here is what you should know: Federal law allows for patients or their agents to view the medical record during a hospitalization. A HIPAA privacy release needs to be signed. Remember, if you want your advocate to have guaranteed access to your record, be sure he or she is named as your legal agent. Speak to your nurse, the charge nurse, or the nurse manager to work out a plan for access to view the record on a regular basis. Be respectful of the work flow of the unit and ask for the most convenient time and location. WHAT TO LOOK FOR IN YOUR MEDICAL RECORD Are the notes legible? Is any information missing or incorrect? If you find an error or omission, ask for the hospital s policy on adding your own brief note to the record to clarify. Do the notes provide enough detail? Be sure the language is not too vague to accurately document the situation. Are the providers providing the rationale for their professional judgment? If they note that a patient is now responding or clinically improved they should include the facts that back up their opinions. Are the doctors communicating with each other? Notes should mention the opinions and recommendations of other providers and clearly indicate that they have consulted with each other either verbally or in writing. Do any of the doctors disagree with the treatment plan? Reading the notes will tell you which doctors have reservations and allow you to consult with them directly. Is the differential diagnosis listed? A differential diagnosis contains all of the possible conditions, with the most likely ones at the top of the list and helps the staff keep a broad focus. Be sure potential diagnoses are eliminated once testing rules them out. 16 EmpoweredPatient Hospital Guide For Patients and Families

27 Is every possible treatment option being explored? An order may have been overlooked or an important test not scheduled. Does the level of uncertainty or disagreement lead you to believe you need a second opinion? You may want to choose a doctor who does not work at the hospital you are using. OTHER THINGS YOU NEED TO KNOW Request copies of your medical record and keep them in a safe place. Be sure to have copies of operative reports, discharge summaries, any dictated notes from doctors in specialized units such as the ICU, and MRI, CT, x-ray and pathology reports. Expect to pay a fee when requesting records. Ask for MRI scans, CT scans, sonograms and x-rays to be saved on a CD or flash drive in DICOM format to take with you before you leave the imaging department. There is usually no charge for burning a CD but you may want to bring your own storage device to be sure. Keep the CD with the copy of the written report. Bring a laptop or a medical dictionary to the hospital to help you understand medical terms. Many hospitals have free wireless access for patients and visitors. Keep your own notes in a patient journal. Download a free Empowered Patient Journal at Empowered Patient Hospital Guide for Patients and Families 17

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