Patient-Centered Care Part 1 of 2: Patients Are Their Own Health Care Manager
Patient Rights and Managing Your Care: Preventing “Bandage Solutions” by “Taking the Wheel”
When one is seeking services in the health care system, it can be overwhelming if you do not understand what is happening in your body; knowing and understanding your diagnosis; what tests may be performed, why and what they mean; and what kind of treatment you are getting, for what reason and how it is supposed to help you. It can be even more overwhelming when you are in charge of looking after someone else’s health and it is your responsibility to make the best-informed decision that you possibly can with the information you have at hand, provided that you understand all the information that is given to you.
In essence, you are a decision-maker in the healthcare of your loved one. As decision-maker, you are part of the health care team, where so many individuals from multiple disciplines are caring for your loved one and they all look to you. They look to you to provide information, to help you understand what is happening and what is the best course of action, and to obtain permission on what the best course of actions are. This is an immense task to ask of anybody because one is constantly wondering if they chose the correct action and there may be many “what ifs”, “could haves”, and “should ofs”.
Welcome to Patient-Centered Care. Where you are your own and your loved ones’ own Health Care Manager.
Patient-Centered Care comes out of an ideological guide that health care in the 21st century must better meet the needs of patients. It recognizes that meeting these needs can be difficult because health care is complex and made up of many small care systems that are interconnected (Institute of Medicine (US) Committee on Quality of Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington (DC): National Academies Press (US); 2001. 1, A New Health System for the 21st Century. Available from: https://www.ncbi.nlm.nih.gov/books/NBK222273/ p. 63-64)).
The National Academy of Medicine, formerly known as the Institute of Medicine, put forth a paper outlining recommended changes to the health care system in which patients’ needs can better be met. They came up with 10 rules to change the health care approach which really translates into 10 rules that patients can expect from their health care: (Adapted from, Institute of Medicine (US) Committee on Quality of Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington (DC): National Academies Press (US); 2001. 1, A New Health System for the 21st Century. Available from: https://www.ncbi.nlm.nih.gov/books/NBK222273/ p. 61-67)).
|Simple Rules for the 21st Century Health Care System|
|Current Approach||New Rule||Observable Changes|
|Care is primarily based on visits||Care is based on continuous healing relationships||Accessible care 24 hours a day, every day. Care in different forms such as telephone, internet, various formats. E.g Healthlink 811 in Alberta.|
|Professional autonomy drives variability||Care is customized according to patient needs and values||Patients are known and respected. The health system will seek to honor choices and preferences, and adapt care to meet the patient on their own terms. E.g. patient goals and preference of treatment included in care.|
|Professionals control care||The patient is the source of control||The health system will take control of care when permission by the patient is freely given. E.g. time to answer all questions about the care they are receiving and why.|
|Information is a record||Knowledge is shared and information flows freely||Your medical record is yours, you may request what you would like to know, when you want to know. The rule is: “Nothing about you without you”. E.g. Requesting the result of a report or test and why it was performed.|
|Decision making is based on training and experience||Decision making is evidence-based||Health care is based on standards that are supported by scientific knowledge and research, not by various accounts of what works which can vary from clinician to clinician. E.g. the best method available based on research and not only on experience of doctors having performed procedure on multiple patients.|
|Do no harm is an individual responsibility||Safety is a system property||Errors in care will not harm you. You will be safe within the health care system. E.g. safeguards in place, multiple checks, checks by multiple persons, frequent education and recertification by staff, etc.|
|Secrecy is necessary||Transparency is necessary||Care is confidential but the health care system will not keep secrets from you. You can know whatever you want to know about the care that affects you and your loved ones. E.g. Requesting a care plan, its goals, and outcomes expected.|
|The system reacts to needs||Needs are anticipated||Care will anticipate your needs and will help you to find the help you need. Help will be proactive in order to prevent, not only reaction-based. Care will help you to restore and maintain your health to the fullest possible. E.g. Not only rehabilitation exercises to a treat problem but, additional exercises to prevent problem from occurring again.|
|Cost reduction is sought||Waste is continuously decreased||Your care will not waste your time or money. You will benefit from constant innovations which will increase the value of care to you. E.g. best treatment that health care has to offer based on evidence, not unproven or anecdotal outcomes.|
|Preference is given to professional roles over the system||Cooperation among clinicians is a priority||Those who provide care will coordinate and cooperate fully with each other and you. The walls between professionals and institutions will crumble so that your experiences and care between different professionals will become seamless. You will never feel lost. E.g. Primary Health Care Clinics versus doctor-only clinics.|
Shifting From Symptom-Based Care “Bandage Solutions” to Health Promotion and Prevention “Taking the Wheel”
The 10 rules for the new health care system seems simple enough but, is really an overhaul in the whole system. It moves away from treating people only based on the problems and issues they are experiencing (“bandage solutions”), and moves towards providing care to prevent problems and issues; treatments to prevent further problems and issues from developing; and maintaining health to the best possible outcome that is realistically achievable or slowing down the progression/onset of something (chronic disease management). This can all be summed up in a single term: Levels of Prevention.
Levels of Prevention
Levels of Prevention (Primary, Secondary, and Tertiary) belongs to a broader term called Disease Prevention. Disease Prevention encompasses three levels of prevention where the aim is to decrease the probability of experiencing health problems (Potter, P.A., Perry, A.G., Ross-Kerr, J.C., & Wood, M.J. (2006). Canadian fundamentals of Nursing (3rd ed.). Toronto, ON: Elsevier Canada. p. 12.).
Primary prevention are things that someone may engage in, to protect or prevent against a disease before signs and symptoms occur. An example of this is following a balanced diet according to the Food Guide and exercise according to the Exercise Guide, to prevent a family history of diabetes from occurring.
Secondary Prevention are things that someone may engage in, to promote early detection of a disease so that treatment can be started promptly with the aim to halt disease or limit disability from the disease. An example of this is yearly fasting blood sugar screening to detect early onset of diabetes.
Tertiary Prevention are things that someone may engage in, to minimize residual disability from disease so that the person may continue to live life functionally with the least amount of limitations possible. An example of this is following a diet and exercise plan outlined by a Registered Dietician and Registered Nurse specializing in Chronic Disease Management of Diabetes Mellitus type II, where following a specialized diet and exercise plan can prevent further damage to the eyes, kidneys, and nervous system as a result of Diabetes.
The health care that is experienced is no longer based on short-term “bandage solutions” where problems are treated without a plan to prevent symptoms from reoccurring or increasing in severity or duration. Instead, it is based on the patient “taking the wheel”, where patients are the center of solutions and armed with information on what they can do to prevent, halt, or maintain and control symptoms. Patients are empowered and encouraged to be motivated to take actions towards disease prevention. Patients are involved in the treatment and care planning processes. Their goals and abilities are respected and taken into account so that a customized realistic expectation can be set forth according to what the patient is capable of doing at the time. In this way, the patient is set-up for success rather than failure because the patient is involved in their overall planning of care.
When the patient becomes empowered and motivated in this way, patients are naturally inclined to increase their well-being. The process of increasing ones’ well-being, where people are enabled to increase their control over and improve their health, is called Health Promotion (World Health Organization. (1986). Ottawa charter for health promotion. Ottawa, ON: Canadian Public Health Association).
With the concept of Health Promotion, we come full-circle with the concept of Patients’ Rights in Health Care where patients’ health is promoted. It is the joint responsibility of the patient to manage their own care by being their own Health Care Managers meaning patients are the center of care and a member of the health care team. Being in this role, patients promote and advocate for themselves by engaging with multiple professionals to come up with a plan of care that is realistic and achievable for themselves. Their care plan is customized for success within the health care system and outside of it.
Note: This does not necessarily mean that if the plan is not achievable, that the patient is to blame. Instead, there is no blame if a care plan is not achieved. Instead, it is a learned opportunity for the patient to meet back with their health care team to come up with a better plan.
Now that you understand a patient’s role in preventing “bandage solutions” and how patients’ are their own Health Care Managers, one may ask, “How can I be the best Health Care Manager for myself?”.
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