This is a guest post by our member Mary Beth Schoening. Mary Beth is co-founder of Behavioral Health Innovators, Inc. an organization combining the power of human compassion with technology, advanced research and best practices from industry to encourage healthy behaviors.  As a digital health strategist, she has developed strategies and tools to engage both patients and clinicians, working with providers, medical device companies, pharma, biotech, HIT and global disease non profits. Mary Beth can be reached via Twitter @mbschoening.

My Definition of an Engaged Patient

…an engaged patient sees herself as the CEO of her health, and views her care team as advisors.  Her advisors will become trusted advisors when trust is earned.  The more trusted the advisor, the more impact they have on the care of the engaged patient.

The engaged patient

• picks her team,
• engages her team in the areas that are most critical,
• prepares ahead for meetings,
• manages schedules and finances,
• encourages cross team collaboration when needed,
• turns advice into action when it resonates, and
• is the responsible, driving force for her successful health outcome over time, working together with her team.

Creative Commons – shareable with attribution, Mary Beth Schoening, Co-founder, Behavioral Health Innovators, Inc. 

Some Practices Used by Engaged Patients

As managers of their own health, engaged patients may use some of the following practices:

• They are engaged in their own health first and then as an extension of that, they are engaged in the management of their health with their care team.
• They bring information to the clinician in such a way that it is a more complete picture of their health profile or their particular concern.
• They research symptoms and treatment options prior to and after appointments.
• They wear fitness trackers or symptom trackers to keep track of symptoms over time so that they can remember symptoms and present them to the clinician in an organized way.
• They take advantage of Dr. Discussion Guides or write a list of questions prior to an appointment.
• They take notes on the doctor’s answers.
• They do research online and with family/peer group to select a doctor with a reputation in their field.
• They get a second opinion as needed.
• They participate in an online community of others with their condition and will seek out strategies and tactics that work for them to help manage their condition.
• They follow bloggers or journals that report on their condition.
• They participate in research (see Iodine, patientslikeme or GLU  all online communities, with a chance to participate in research).
• They follow up on tests if no one gets back to them.
• They loop back to their PCP after they have been referred to a specialist but further pursuit of a diagnosis is still needed.
• They keep notes from multiple doctors.

Patient Engagement Starts First, with Good Communication

Patient engagement starts first, with good communication between the care team and the patient. I found these statistics to be a shocking summary of the challenges:

• 40-80% of what a doctor tells a patient is immediately forgotten
• of that remaining information, 50% is remembered incorrectly.

The top 3 reasons for not remembering:

• Healthcare practitioners use medical terminology
• Healthcare practitioners use spoken word (doesn’t write down information)
• There are patient barriers – low education or specific expectations

Source of statistics: JRSM – Patients’ memory for medical information – Roy P C Kessels, PhD