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Live Blog of Saturday Plenary: Purposeful Engagement

Posted By Frank deGruy and Jennifer Hodgson, Saturday, October 6, 2012
 This morning's live bloggers are Frank deGruy and Jennifer Hodgson.
Please follow along during the plenary and add your thoughts in the comments.
You can email your comments for uploading to reitz.randall@gmail.com.
 
 
Frank deGruy and Jennnifer Hodgson 
 

 

Jennifer 8:45am Opening Thoughts. Engaging patients in their journey through a health event is a skill that is often challenging for providers. It means tapping into the very thing that we are taught to contain as we are trained in our professions, our emotional connection to patients. This plenary will invite attendees to listen and absorb patient stories and reflect on their work of engaging patients, families, and communities in healthcare.

 

Frank 8:45am Opening Thoughts. The depth and sophistication of the presenters at this meeting has improved tremendously. This morning we will hear from a panel of presenters who will help us think through how to incorporate patients, clients, consumers more deeply into the collaborative partnerships we are trying for here. This should be threatening, exhilarating, enlightening, and edifying.

 

Jennifer 8:54am. Purposeful engagement in patient-centered practice does not mean more time but better use of our time. It takes effort and energy not to listen or to ask about the patient and family experience. So, what would happen if we learned to use that energy in ways that help us to get to "health" faster?

Parinda Khatri (moderator) is introducing the panel of plenary speakers: Danny Sands (primary care physician), Kerri Morrone Sparling (patient blogger), and Laverne Miller (attorney). I am excited to hear their stories!

 

Frank 9:00am. Parinda Khatri is moderating. She sets this up as a conversation not about whether we engage with patients and consumers, but how. Danny Sands, MD, MPH: HIT and participatory medicine. Kerri Sparling: Type I DM since childhood, active blogger whose personal story doesn't define her but helps explain her. Laverne Miller: Attorney at Policy Research Associates with a bug about advocacy, particularly for the disadvantaged and vulnerable.
 

 

The plenary panel

 

Jennifer 9:00am. Dr. Sands opens with a description of his journey and lessons learned along the way. He shares his story about his enculturation into medicine how providers are often trained not to be wrong or are afraid to admit not knowing. He learned how important it is to ask patients questions. Why are some providers so afraid to talk to patients about what they think is going on? Is it really about time or is it about being afraid of not knowing the answers.  

 

Frank 9:10am. Danny heard early on how learners were reluctant to show what they didn't know. He had an early mentor who upbraided him for not asking about what he didn't know. Learned early on to ask, not presume or pretend to know. At Boston City Hospital learned how important the home environment was to how patients ultimately did. Fortunate to have early team-based care experiences, and mentoring by Tom DelBanco, who said, "Nothing about me without me." Heard early on,"The single most important resource in patient care is the patient." These are powerful formative experiences that can shape a life attitude.
 
Because of the accident of colleagues (with whom he frequently emailed) also being patients, learned early on the value of email to patient care; this flowered out to encouraging patients to use email, access the web, and otherwise use technology to stay connected and learn about their conditions.

Important mentor was Tom Ferguson, who helped develop patient portals. All culminated in founding the Society of Participatory Medicine. This is worth checking out.
 
 
Jennifer  9:15am. Dr. Sands talked about a placement he worked at where lots of providers worked under the same roof and side by side. Had a mentor who said "Nothing about me without me." This was in relation to a patient bill of rights. What a powerful statement! Empowering patients is a critical part of healthcare reform. He goes on to say that he learned the single most underutilized resource is the patient. So, he employed patients in his setting and in the early 90's started communicating with patients via email. He co-authored the first guidelines on using e-mail to communicate with patients {insert link}. This decreased the distance between his patients and him. Amazing access!
 
 
Frank 9:17am. Kerri introduces herself as "just a patient," in a sea of people with letters after their names, but it's clear that she sees that as sufficient credibility to speak knowledgeably about her experiences in a way that helps us be better at what we do. She's a blogger! She's out there (here). I'll have to track this down.  Here's the link to her blog.
 
 
The panel
 
 
Frank 9:23. Laverne Miller: What a brave woman! A young professional with a bright, promising future as an attorney, then dealing with mental illness, and facing the prospect of huge losses of career, professional network, income, prestige. She describes an early experience with a therapist who cried with her—made herself completely vulnerable—and thereby opened up the possibility of an actual shared experience. A partnership. She can "tell" when a professional actually understands her—gets her, and will thereby be helpful to her.
 
Great question. Medical clinicians get too busy, too narrowly focused to actually get the big picture that is essential to grasping the problem fully. Can't be helpful or effective without a full picture. Behavioral clinicians frequently add that dimension.
 
 
Jennifer 9:25am. Laverne Miller (attorney) opened up about how she is speaking from the perspective of a consumer and how her experience of her mental health changes started back as a child. She noted that her mental health was never the focus of her visits to her primary care provider, yet she was struggling. She felt different but no one asked her how she was feeling and coping. She did not want a label but wanted to be able to express her experience emotionally, cognitively, and socially. In her culture and community admitting mental health issues was not done. She felt alone. This is a powerful argument for routine screening in primary care and integrated care visits. If only someone would have asked, "How are you doing?"
 
 
Frank 9:30am. Kerri is funny! She describes her relationships with health professionals as though they are part of her personal circle, who remain there only if they act like there is a meaningful relationship going on. Human to human. Dispassionate, objective posture just won't do. She'll fire you if you come at it like that.
 
This business about knowing and being known: We're hearing from the professional side of the river (Sands) that clinicians aren't necessarily up to revealing themselves as people who have feelings, don't necessarily know the answer, are real people. We socialize that out of professionals, and we need to get it back in.

Kerri wonders why this isn't obvious, since we professionals all go the the doctor, and we want to be treated as people by people there.
 
 
Jennifer 9:32am. Laverne said we are not a "monolithic" community and we need to be accountable to practicing from a culturally sensitive lens. We need to understand how different cultural groups make healthcare decisions, come to healthcare visits as a group, and perceive use of medical interventions and diagnostic labels. Dr. Sands agreed that we need to be training providers how to engage patients and set up patient and family advisory boards. We need satisfaction surveys. Kerri asked "Don't doctors go to the doctor?" What a powerful challenge to get providers to think about it from what they would want for themselves, their loved ones, etc.
 
 
Jennifer 9:37am. The question is posed to the panel on how do you engage the patient who does not want to or appear to want to engage? Kerri said to call patients on it but be willing to be called on back if you are not engaging back. Dr. Sands said that you have to try using technology. Laverne said you need to ask about the side effects of medications and how that may be a cultural and practical reason for patients to not want to engage. She also said people are bringing to the table the sum total of their experiences. Some have trauma stories and they don't want to be touched and are often not asked what they need to feel safe.Their visit is often not orchestrated around what they need but rather what the healthcare system thinks they need.
 
 
Frank 9:40am.  Kerri is so thoroughly imbued with the necessity of having a human-to-human relationship! She likens it to dating: "I went to a new primary care physician, and we called each other out on engaging and taking responsibility for our respective parts of the relationship; it was kind of hot. This could be a great relationship."
 
 
Frank 9:45am. What a balanced panel! All bright, equal floor time, different perspectives, provocative questions from Parinda.  Laverne has this exquisite ability to lay out for us how just a tone, just an attitude of superiority, can be so damaging to a healing relationship. She is convincing me that we really need to sit still, listen, and get inside the others' story before good work can be done.
 

Jennifer 9:48am. Laverne, wearing her attorney hat, said to make sure to explain to patients know who their information is being shared with, why, and how. Patients who do not want to share information may benefit from peer specialists to help explain why it is so important. Dr. Sands challenged that he should have the right not to take care of a patient who will not let him or her have access to her medical record. He provided the example of providers not having access to mental health records and how that is complicated and can prevent good care.

Who owns the patient record? Kerri thinks the patient should have full access to their record. What are the limitations around full access?

 

Frank 9:50am. Parinda! Raises the difficult issue of a patient's unwillingness to give permission to disclose personal information (I.e., ETOH consumption) to all the members of a team. Interesting discussion about winning the confidence of other team members, HIPAA's requirements that actually allow disclosure of records that affect care, etc. Daniel makes the case that we just have to share that stuff in order to avoid bad outcomes. Kerri argues that they are her records and she can decide who sees what, but thinks her care depends on all the clinicians talking to each other with full information.

 

Jennifer 9:52am. Parinda posed the question to the audience on what is one thing we can do differently to move this conversation of engagement forward.

Kerri: Said we are having these discussion in a bubble. Leave the conference and hold yourself accountable to looking your patients in the eyes. Be human!

Laverne: Said go back and step up. Demand change! Focus more on practice-based evidence and go out and observe and take risks....walk the walk in all your interactions.

Danny: Influence your office by changing policy to get patients and family input. Open up patients' records to them. Lower the barriers for patient engagement.

 

Frank 9:52am.  Parinda: Engagement 2.0. What can we go home and do that will cause our conversation to be more advanced, more effective next year. Kerri says don't go home and do the same thing you've been doing. Go home and look patients in the eye. Let them know you have a heart and eat apples. Be more human.

Laverne says step up and move to practice based evidence—observe, take risks, be vigilant, be brave.

Danny says if you can influence your practice to make sure you get more patient input. Put patient advisory boards in place, lower the barriers to access. Be at least as available to family input as your vet is.
 
 
Frank 9:55am. Kerri just keeps insisting that she is a person, needs to be treated like a person. For example, she is a person with diabetes, not a diabetic. Her family needs to know what's going on with her health so they can have a better life.
 
 
Jennifer 9:57am. Danny talked about the Annuals of Family Medicine published an article this week about Open Notes...check it out here!
 
 
Frank 10:00am. Laverne closed us with a reminder that she is not fragile, she is not broken, she is resilient and sturdy and capable of participating! Good one!
 
 

Jennifer Closing Thoughts: I learned from this presentation that I need to be more accountable and purposeful in the way I train providers to engage with patients and families, include them more in my writing and presentations, and focus on their perspectives more in my research. I also value the act of looking at them in the eyes and realizing that I need to more culturally aware of the systems outside the office that support and challenge them. What an amazing panel representing a diverse sets of experiences all unified by one theme: we need change the way we think about healthcare to be more inclusive.

What are you willing to do to purposefully engage patients and families more in the healthcare experience?

 
Frank Closing Thoughts. This was an exceptionally well balanced panel that took us beyond where we were. Perhaps we should bake this plenary (this kind of plenary) into our subsequent meetings.

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