A Patient’s View of Patient Engagement

The concept of patient engagement may be common sense to many, but our healthcare industry and government resisted it for as long as they could. With health spending twice that found in other industrial countries and a growing body of evidence in support of patient engagement, ignoring it was no longer possible. It is a fact that patients who are more actively aware and involved in their health care experience have better “health outcomes” and incur lower costs. Patient engagement has become the new call to arms by government health experts. We need to help it along.

I will often be using the word engagement without the patient descriptor in many areas of my blogs because I believe healthcare engagement begins when one is healthy, or “pre-patient”. Engagement calls for treating individual health consumers as contributing stakeholders  in our healthcare system. Engagement can be broken down into two parts:

  1. Engagement of the public at large in healthcare policy on the national and state levels, (public engagement) and
  2. Engagement in one-on-one doctor/patient interactions (personal patient engagement)

Public Engagement

Becoming aware of and participating in public healthcare policy is where Affordable Health Care and Beyond for ALL Americans begins and ends. Our government defines and controls the healthcare system operating in the United States and its policies affect the health care of every single person in our country.  This is where much of the action of BB’s Brigade will focus. Our healthcare system is in its overpriced (and less than “best” quality) mess today because we, as individual Americans, have not engaged and do not make our needs known to our elected officials in Washington as one unified voice. We accept the status quo and feel powerless to make changes. We let special interest lobbies define the care we get and the information we receive, and we do not demand better quality of care for all Americans.

Healthcare laws and regulations are impacting us profoundly, yet we live our lives largely unaware of their importance. We are at a crossroads in healthcare, where the information technology revolution (e.g., electronic health records and telemedicine) can greatly improve healthcare value, yet we fail to support and encourage it. The entrenched members of HICUP  (BB Brigade acronym for those who are engaged in the “business of health care” in the USA) resist any change that adversely impact income and profits. Knowledge is power, and we often fail to recognize and use it for our benefit.

Personal Patient Engagement

For most of my life, interactions with my doctors could be outlined as follows:

  • going to the doctor when sick
  • relating a medical problem in as few words as possible (while the doctor scanned my file)
  • being examined (with additional tests ordered, if needed)
  • prescriptions written (usually)
  • while checking out, being given a follow-up appointment if necessary

The doctor usually made it perfectly clear that he/she was the medical expert with the answers and I was the patient who received the answers. He/she was very busy and didn’t have time to “gab”. This is the “business of medicine” in action and not the “practice of medicine”.  If I asked too many questions, most doctors displayed signs of impatience and even irritation. I have had many doctors over the years, and this doctor/patient relationship pretty much summed up my interactions in health care…until recently.

With new healthcare reform initiatives, the availability of more information, and your own empowerment, you can help shape a new healthcare paradigm for the doctor/patient relationship. This new relationship centers on “patient outcomes” and not on income generation for the doctor. Becoming an engaged patient is in your power.  Personal patient engagement involves taking responsibility for one’s own health care through

  • Communication and shared decision-making with medical professionals
  • Maintaining a healthy lifestyle

Doctor/patient communication and shared decision-making, coupled with the information obtained from personal and medical data, maximizes the potential for best patient outcomes. We must be willing to manage our own health (before we become patients) and care (after we become patients). Some of us will not have the ability, skills, and knowledge necessary to do so and will need the help of health advocates (family members or friends who are willing to help out).

A visit to a doctor’s office where patient engagement is fostered and actively practiced can be illustrated in the diagram below.

patient engagement paradigm

The doctor (or other healthcare professional) brings knowledge and clinical skills acquired and honed during his/her education (in classes and on-the-job training programs) and years as a practicing professional.  In consulting with doctors, patients bring detailed knowledge about their bodies (we live in them 24/7 after all) necessary for proper diagnosis.  We are the first to notice when something is not right with our bodies.  Patients are not a collection of parts, but rather complete persons capable of common sense thinking, drawing conclusions when given the facts, and even confronting bad news.  No one is more interested in getting the best patient outcomes than the patient himself.

The data contribution to this patient engagement paradigm includes easily accessible electronic health records (preferably in a universally accepted format), general medical information, and the latest evidence-based clinical data available.  With the availability of “plain language” medical documents, even the non-medical patient (or patient advocate) can use the data for improved patient outcomes. Because the practice of medicine is rapidly changing, good doctors use both individual clinical expertise and the best available evidence-based clinical information. They can use the knowledge gained from these sources to improve their performance, make better treatment and ordering decisions, and make better referrals. Without up-to-date best evidence, the doctor’s clinical practice risks delivering less than the best patient outcomes.

Patient engagement means taking control of and managing one’s own health care.  We need to develop an awareness that health care does not begin at the doctor’s office or at the moment one becomes sick. Maintaining a healthy lifestyle is our first priority.  This is a part of personal engagement that employer-sponsored wellness programs support. Unfortunately, our government does not allocate much healthcare funding for keeping the public healthier. Some funds meant for keeping the public healthier are even diverted for other uses (e.g., state government’s use of smoking cessation funds from tobacco company settlements for general spending).

Patient engagement is about changing the patient AND the medical practitioner. I am not talking about changing people’s personalities. A doctor’s personality and whether you like it or not, is a matter of taste. When choosing a doctor, I, personally, do not look for one who is “nice”, but one who will provide me with competent, quality care. I also require a doctor whose interactions with me are mutually respectful and acknowledge the contributions I bring to patient outcomes. Some of my doctors do not acknowledge any need to change their “business of healthcare” paradigm and do not welcome any changes that threaten it. They view any problems with patient outcomes as the fault of the patient (we do not exercise enough, eat well enough, and follow directions well enough).  When I have sufficient choice, I sever my relationship with these “dinosaurs” and seek other medical professionals to consult.

The Bottom Line

Patient engagement means getting involved in public healthcare policy and taking part in the shared-decision making for our personal healthcare. Exercising patient engagement  must be initiated and exercised by us (or our patient advocates). Medical practitioners (and government) have to overcome strong financial conflicts of interest built into the “business of medicine” to embrace patient engagement. We are the vanguard for change and must fight for a place at the table of healthcare decision-making, a place we have not been historically welcome. This will play out in many subtle ways and sometimes even in very harsh ways. If your personal medical provider is not open to a collaborative and shared decision-making process, then change to a new one, if possible. Do not wait to engage when you are sick and do not have the strength to do it. This blog is the record of my patient engagement journey.

We, the individual healthcare consumers (or future consumers), can no longer afford (both financially and health-wise) to passively accept the direction and control of our health care by others. We should embrace its pursuit with all the energy and time we can muster. Patient engagement may be the latest catch phrase for government health experts, but for us, it is our call to action for “best” patient outcomes.  Your life may depend on it.

One thought on “A Patient’s View of Patient Engagement

  1. I participate in my health care because I had a close call with a doctor who didn’t listen to me for many years. I could have died. I have a bleeding disorder and the doctor had to stop surgery because I lost over a unit of blood from one small incision. This taught me a very valuable lesson. The lesson is very simple, if I have contact with a doctor who won’t listen or take time to discuss treatment, then I know I need to simply go to another doctor. I know my body and I know doctors can’t remember everything about everybody. Do they review your chart before writing prescriptions? If not, you have the wrong doctor. Some people just feel intimated and don’t ask questions even when they don’t understand. I used the line, “I am going to participate in my health, does that bother you? Can you handle the interaction?” Remember some doctors have huge egos! Speak up people. Becoming an engaged patient could save your life one day!

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