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health partners Archives - Page 3 of 3 - Danny van Leeuwen Health Hats

Test driving and consent to share

By | Advocate, Caregiver, Consumer, ePatient | One Comment
This health journey I’m on can be quite a ride. Tomorrow I’ll test drive a new neurologist. They want me to bring certain information from my previous neurologist: Recent notes, medications, MRIs on CD. They can’t just go get it. Their system doesn’t talk with the previous neurologists’ system. I know I’m going to have to sign something that tells me how they will keep my personal health information (PHI) private. What does that even mean? The principle is: Individuals should be provided a reasonable opportunity and capability to make informed decisions about the collection, use, and disclosure of their individually identifiable health information. I should be able to decide if, when, or what information I want shared about me, with whom. The relevant law is the HIPAA Privacy Rule. The Privacy rule defers to covered entities (providers of care) with regard to the decision of whether to obtain an individual’s consent in order to use or disclose PHI for treatment, payment, and health care operations purposes, and with regard to the content of the consent and the manner of obtaining it. 45 C.F.R. § 164.506(b). Here’s a link to more information. I think it says that the covered entity can decide whether or not to get my consent. And what isn’t treatment, payment, and health care operations?

I don’t really care who knows anything about me. I’ve always just signed whatever is put in front of me. After all I write a blog about health and talk about my health openly.  It might as well be on a billboard. But what if I did care and didn’t want to sign? Can I say no? Will anything about my care change if I say no? What I do care about is that my wife – my health partner – and all the members of my health team have access to all the same information I can have access to. How do I pave the way for that? We’ll see what happens tomorrow.

Honoring and aligning silos

By | Advocate, Caregiver, Clinician, Consumer, Leader, Musician | No Comments
Teaching in a nursing leadership academy this week about acting as a change agent or change catalyst in an organization or team. Common theme for the participants – frustration overcoming silos, working across silos, aligning silos – silos, silos, silos. As a family member, as a nurse, as a band member, as a person with MS, as a team leader, I respect and value silos. Defined boundaries – them and us – helps with identity, internal effectiveness and growth, focus, controlled expertise, and protection. At the same time I’m the health hats guy – proud of my many hats, teams, identities. I try to connect dots, align, reach across, welcome, join, participate. I’m anti-silo. Quite a tension. Who doesn’t deal with this challenge?  How do we value silos and overcome them? Appreciation, trust and alignment.

 
First, appreciate other silos as reservoirs of ability, history, perspective, and value. Next, be trustworthy to other silos – share, deliver, respect. Trust in each other’s strength, abilities, integrity. Finally, align. Clarify joint mission – together we’re trying to do something – better life, spread knowledge, entertain, growth and development, best health. So if we know what we’re trying to do together, if we act in a trustworthy way, and appreciate each other’s value, then we can honor and overcome silos. A magic lever of best health.

A Powerful Union: Relationships within Health Teams

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Leader | No Comments
The relationship between health team members, especially people and their clinicians and caregivers, frequently arises as a topic of this blog. Let me share with you one of the values of Advocates.  I work for Advocates as VP of Quality.  We express our values in Advocates Way. Advocates provides person-centered, community-based support services to individuals and families with mental illness, addictions, developmental disabilities, brain injury, and other challenges in living.

A Powerful Union

We strive to foster relationships in which the person feels understood, is respected as an expert about his or her own life, and takes a leading role in all decision-making and planning that could affect that person’s life.
 
We see each person we serve as a “guide” whose experience, wisdom and perspective are unique and vital to our mutual success.  When a person’s expertise about her or his own life is combined with our knowledge and resources in an atmosphere of hope, collaboration and mutual respect, truly marvelous things can happen.
 
We encourage and support people to take charge of their own lives. We do this even when the path a person chooses includes an element of risk and decisions which may cause us concern.  We believe that all experiences – successes and challenges alike – result in growth, learning, and change.
 
Isn’t that sweet! A constant challenge to live.

Health Partners

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man | No Comments
Many years ago my wife and I got a letter from Zimbabwe: Dear Mr. and Mrs., I’m your son’s health partner.  He’s fine now, but he had malaria, was in the hospital for several weeks, and almost died. Our son had gone to Zimbabwe as a development aide worker.  During his team’s training, my son asked me to teach a health unit for them. I was a nurse and had been a paramedic.  I essentially suggested they keep it zipped, know where their food and water came from and had them select a health partner in the team.  The idea was that if anything should happen, health-wise, they would have someone who would stick with them as they got the treatment and recovery they needed in this unfamiliar place.  I’m so glad I did.  I’m reminded as many of have children leaving home now for college, do they have a health partner? Who will stick with them if they get sick? Navigating health care when you feel like crap is tough at best. Identifying a health partner before it’s really needed is the key. I don’t think of it much myself. My wife is my health partner.  My sister and my kids will step in if need be. I’m blessed.  Who is your health partner?  Who are your children’s health partners?

Dialogue

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man | One Comment
Let me tell you about our family’s experience as a team, talking, supporting, and coordinating during the terminal phase of our son, Mike’s death from metastatic melanoma. Mike was living near Buffalo with his girlfriend, going to school, my wife and  I lived in Albany, and my other sons lived elsewhere. Mike’s girlfriend’s parents (I’ll call them in-laws here – it’s shorter) also lived in Buffalo. We struggled with logistics, emotions, practicalities, money, clinicians, treatment, life. One day when my wife and I were in Buffalo at the in-law’s we realized we all cared about Mike and needed to coordinate, support, communicate regularly. We also realized that while Mike was the central, principal person, the whole expanded family was hugely impacted and impactful. We set up a weekly conference call-this was before smart phones, Skype, other media. During these calls we addressed everything: pain relief, bowel problems, transportation to appointments, where and whether to get a specific treatment, test results, which clinician, where Mike lived, fund raising, relationships among us, fear, grief, grief counseling, humor, location of and caregivers during Mike’s post surgical care, school, equipment, whether and when to start hospice, the weather (travel). While we didn’t include clinicians, we learned together more about what treatment was available and what kind of clinicians fit in with Mike’s outlook and our system. Found a radiation oncologist who especially fit in and connected with Mike and he became our lead clinician. We systematically went around to each person on the call, starting with Mike, everyone shared their issues, information, whatever. Everyone was heard, we got much better at active listening, we felt included, supported, loved. We knew what was going to be done during the week: assignments, appointments, travel. Sibs joined when possible. A moment for me was when Mike’s girlfriend was upset with me, because I told her mom the result of a test before she could tell her mom. It seems so small in the scheme of dying, but it helped set a tone, removed an annoying pebble in her shoe. These calls (and in person when possible) continued through to after Mike died. The day after he died, we went around the room, with all of both our family and the in-law family recounting how Mike died, where everyone was, how we came to the place of being together at that moment. Before he died, Mike told me that his last year was the best year of his life. He was in love and he was loved. Open dialogue amongst us made a difference. No unfinished business. The grief felt clean.  I’m telling you this story now because I attended a symposium yesterday sponsored by the Massachusetts Department of Mental Health about a treatment for psychoses from Finland being tested at Advocates, Inc. called Open Dialogue.  Once I get permission to share details with you from the presenter, Mary Olson, PhD, I will. It reminded me of our experience with Mike dying and beautifully reflected the values often spoken about at the Society for Participatory Medicine and in this blog. Open Dialogue – a magic lever for best health.  More to come.

Are We Safe?

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Leader | No Comments

Sometimes our health journey seems fraught with peril. So much can go wrong. Unexpected danger lurks around every corner. Yet, team members (caregivers, loved ones, professionals) accompanying us on our health journey all seek a safe ride for us and themselves. Safety is complicated. It begs many questions.

  • What kind of safety – emotional, physical, or cultural? Personal, team or organizational safety? Absence of error, mishap or tragedy?
  • What about the dynamic tension between risk and rights? We could feel absolutely safe with a trusted Big Sister always watching and protecting. How much of our human rights would we give up for that absolute safety?
  • What role do we ePatient drivers play in our own safety? What role do our leaders organizations play in our safety?
  • How is safety demonstrated? Surely part of safety is perception.  Read More

Helping

By | Caregiver, Clinician, ePatient, Leader | 2 Comments
As a nurse, caregiver, informaticist, and consultant, I help others. Intriguing concept – helping – much dynamic tension. Altruism, emotional gratification, self-satisfaction, egotism, persistence, profit, dependence. After nursing for several years I joked that nursing was an acceptable form of nosiness. I’m involved with people at intimate moments in their lives. I am gratified to participate. As an informaticist, helping clinicians and patients utilize electronic tools, the hardest work is listening to what help was needed and ensuring that the tools served the users rather than the other way around. It’s not about the tool, its about the patient, caregiver, and clinician. Caring for family members,  I’ve struggle with the tension of what I wanted to do to help and what help was wanted. Akin to parenting power dynamics. Occasionally, I’ve had to stop helping because we crossed a boundary of tension: My contribution wasn’t really helping, my feelings were hurt, I felt trapped, I was treated poorly, I wore out. As a consultant, I often found a misalignment between the help asked for and the help wanted. Confusing and disheartening. There’s a lot of helping in health care. How can helping be cleaner, regenerate, be powerful? Attending to personal, organizational, and system health of the helper – magic lever to best health. Fitness, rest, communication, leadership, fiscal soundness all help the helper. What challenges do you face as a helper or receiving help?

World Mental Health Day

By | Caregiver, Family man | 3 Comments
My heart aches – I have loved two people with serious mental health disease. I am a caregiver, I want to be a contributing part of my loved ones’ health journeys. Heck, I became a nurse because I find fulfillment in being an intimate part of people’s health journey. I felt gnawing  inadequacy living with my loved ones with serious depression. It killed me that they didn’t appreciate themselves as much as I valued them. We couldn’t figure out how to let me in to be part of their team. They were so alone, I got so angry. I honor this day to honor them. Lillie and Peggy, you made life rich. Thanks.

Give Me My Damn Data

By | Caregiver, Consumer, ePatient | 3 Comments
Making decisions about my best health requires information, wisdom, faith,and luck. Information comes from data, observation, and communication. Wisdom comes from experience and reflection. Faith is trust. And there’s a crap shoot in choices, who knows. For me health care decisions is a team sport, best done when I’ve been able to hand-pick my team – professionals and loved ones. Necessary to my decisions is access to my medical record. Access to my medical record by itself is like drinking water of unknown quality from multiple fire hoses. I have at least ten medical records, seven of them electronic. My primary care, neurology, ophthalmology, neuro-ophthalmology, cardiology, and urology records all electronic and on different systems. My massage, acupuncture, and chiropractic records, all paper. Not to mention my electronic Personal Health Record on Microsoft HealthVault that I use to try to consolidate them all.  I have a chronic illness but I function well. I’ve never been an inpatient. Are you dizzy yet. My periodic, episodic decisions are somewhat based on the data in the records, but more on knowing my nonnegotiables (e.g., nothing that makes me depressed) and having faith in my professional health team. I worry about two scenarios related to my medical record:  1) I want all of my health team to have the same information to share among each other – primary care to specialist, specialist to specialist, and specialist to primary care (relevant history, allergies, medications, procedures, diagnostic study results, impressions, diagnoses, unresolved dilemmas, next steps). Now I have to compile it to share. 2) I want the information readily accessible to whoever takes care of me in an unexpected situation when I can’t fully communicate for myself like when I fell, had a concussion, and went by ambulance to the ER (Current medications and medications that didn’t work, allergies, doctors, procedures, relevant history, recent diagnostics studies, ability to communicate, ability to learn, caregivers, typical reaction to pain and the unknown, what works to relieve pain, inform, and calm, and cultural and spiritual needs). Ideally, I would have a health partner with me to help, but I might not – luck.

In the face of this quagmire, I marvel that some providers question whether I should have real-time, unfiltered access to my medical record.  If I don’t, who will? They don’t. Nobody has unfiltered, real-time access to my complete record. Decision-making is a minefield of insufficient information, wisdom, sensitivity,or trust with awkward emotion and  bad luck. Access to real-time, unfiltered information is necessary to decision-making, but insufficient. Give me my damn data.

Advocacy – Health Partners

By | Advocate, Caregiver, Clinician, Consumer, ePatient | 4 Comments
I’ve participated in several lively discussions about patient advocacy in the past weeks –  at the Boston Healthca.mp #hcbos, on the Society for Participatory Medicine (#S4PM) list and with Kelley Connor of Real Women on Health fame. Advocacy has two overlapping worlds – individual advocacy and policy advocacy.  I will muse here about individual advocacy in acute care. An advocate is a guide, champion, companion – health partner. So challenging for the acutely ill person to be effective as their own advocate. One of my sons went to Africa as a development aide worker. When I invited to engage on health with his team as they prepared for their adventure, I suggested that they identify a health partner among their team. Several months into their experience, we hadn’t heard from him in some time. Then we received a letter, Hi, I’m your son’s health partner. He contracted malaria… OMG. Health partners are those who know the patient and can focus on logistics, relationships, communication/information, and patient comfort. Vigilance about the mundane important things comes first: a good team, hand washing, pain management, and mobility. Next its access to information and setting goals or milestones. What has to happen before the patient can be discharged? Pain management, activity level, self care in the hospital, a safe place to go upon discharge. If the acute care is elective, its scouting out the official communication routes: who’s the charge nurse, where’s the patient relations office, will you be communicating with a hospitalist, an attending, a resident, or a student?  Who’s in charge of the overall care for this episode? Charles Inlander’s book, Take This Book to the Hospital with You gave voice to my early nursing career observations that the health journey was a risky place.  I had realized that my role as a nurse to be a patient advocate was valuable and necessary, but insufficient. Acting as an advocate for a son when he had cancer, I didn’t know as much as I thought about what he wanted and how I could be of help and not get in his way. We had many discussions together and as an immediate family about death and dying, about treatment options, about communication with extended family. So challenging to integrate my perspectives, emotions, fears and put his first. Thankfully, it wasn’t just me in that role. We had an advocacy team – my wife, other sons and their partners, his girlfriend and her parents. We did pretty well. As a nurse I’ve been challenged by advocates. It’s been rare that the advocate was clearly identified. More often the tension between family members muddied the water. For end of life issues, advanced directives and durable power of attorney helps clarify, but most acute care episodes are not end of life.

I’ve embraced and learned about health partners as a patient, caregiver, nurse, and leader. I’ve had cyclical conversations with any family I might serve as a health partner, especially my mother and my wife. With my mother it took 15 years to arrive at comfort with the discussion. My sister-in-law, a nurse, was the best I’ve ever seen identifying and supporting health partners with her patients. She brazenly and tenderly included it as part of her routine first assessment of every patient she cared for and then included them in the routine care.
Then there’s private, professional advocates – almost 350 of them members of AdvoConnection.  What are your thoughts about health partners?