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Advocate

Engagement after the Olympics – a Marathon not a Sprint

By Advocate, Leader No Comments
 I’m watching the Olympics a lot this week. These athletes are so focused and consumed with their event. Many of us committed to participatory health have a similar focus in our health journey or the health journey of those we support – head down, training, grinding, overcoming the next obstacle. Eventually, periodically we can take a moment or an hour or more to look up and take in the landscape. Our outward attention is dear. What’s the road map for expanding the circle of a participatory health care culture?  How do we make best use of those moments to engage others? I’m a person who likes to have an impact and enjoy myself in the process. I think about the culture of health care pretty broadly. We can impact our homes, our extended families and networks, our communities, our clinics and doctors’ offices, our institutions, and our government. Remember, while most chatter is about health care within institutions and government, in balance most happens outside in families, networks, and communities. So, list those scenarios, locations, subjects that you have a passion for. Show up. Find others you meet who are trying to have an impact – for me its this blog, the Society of Participatory Medicine, HIMSS’ Connected Patient Committee, PCORI, and now my town’s Disability Commission. Note those you see as a role model – engage them, copy them, join them. The good news is that there’s so much opportunity. If you try something that doesn’t feel right-no impact, not fun – there’s always something else to try. Move along-again your energy is dear. Meanwhile, take care of yourself – you’re dear to us. This is a marathon, not a sprint.

Driving your own health journey

By Advocate, Caregiver, ePatient, Consumer, Family man One Comment
How is it that people develop and learn to drive their own life, their own health care journey? Our 5-year old grandson usually gets picked up from school on Thursdays by my wife – a highlight of his week. We were on vacation. The email notification from his dad to the school of the change in schedule was never received.  My grandson noted the expected change, rearranged his after school routine with his teachers.  Presence, confidence, comfort, acceptance. Environment, self-confidence nurtured. Driving his own life. Some don’t have my grandson’s fortune.  They have tenacious, dogged, self-preservation – I’m driving my own life, dammit! Some have one of these characteristics, but are unfamiliar with American culture and language or American health care culture or language. They may find themselves in dire straits.  They benefit from guides with a road map and interpretation. But can the desire to drive your own journey be created with classes and tools?  Probably not. Plenty of need and opportunity for guides, classes, and tools for those whose fires are banked and need stoking.

Disclosure – Revealing health issues

By Advocate, Caregiver, ePatient, Consumer One Comment

Disclosure: The act of revealing something. How does disclosure impact life for the disabled, chronically ill, or their caregivers? Disclosure has a threshold: before disclosure, after disclosure. Revealing something that may impact success or perception. I have multiple sclerosis, mental illness, am an amputee, have a son with autism, am very short, have chronic pain, manage my father’s care on the other coast. I’m applying for a job, college, a loan. My situation has changed, I’m newly diagnosed, I’ve taken responsibility to support…..

There’s legal implications: non-discrimination; fitness to do job. There’s personal style and boundary implications: I am who I am; it’s nobody’s business. It’s situational, personal, risky. Read More

Technology is the cutlery and the dessert

By Advocate, Caregiver, ePatient, Clinician, Informaticist, Consumer, Family man One Comment
I’m preparing a presentation about Caregivers and Health Information Technology to be delivered in a month at the HIMSS14 conference in Orlando with MaryAnne Sterling. So many challenges as caregivers, as persons in the center of care, as health professionals, as administrators, and as developers. First, there are different levels of caregiving. There’s the caregiving of life partnerships: partners, spouses, parents, children, friends.  That’s different from caregiving for someone who has challenges with activities of daily living and different from caregiving someone who has diminished mental capacity, is acutely, gravely ill, or is dying. The value of technology for caregivers and the person in the center is to enhance information access, communication, tracking and scheduling. The farther along the continuum of intensity the lonelier it gets and the harder it is to carve out time for anything else, especially technology. What did we do before video links like Skype or FaceTime, before tweets, chat rooms, and social media?  They’re easy to learn, easy to execute, immediate gratification – limit  loneliness. Tracking and scheduling on paper and spreadsheets has been forever-apps have a learning curve. Searching the web is easy, but getting your personal health information is hit and miss and takes maintenance to keep accurate and up-to-date. Communication with and between health professionals remains, for me, the greatest challenge. Technology can help – but only for those who already prioritize communication. If you’re good at communicating, technology is a wonderful adjunct. If both parties aren’t good at it, technology is no help at all. The main dish of caregiving is person-to-person. Technology is the cutlery and the dessert.

That Sinking Feeling of Stress

By Advocate, Caregiver, ePatient, Consumer, Family man, Musician No Comments
You know that sinking feeling you get in the pit of your stomach when something is seriously wrong?  Often accompanied by inability to focus on the here and now (your music, your kids, your grandkids, your partner), trouble sleeping, mind racing? Happens when you get bad news, when someone treats you like crap, when you think you’ve made a serious mistake, grief. It’s the fight or flight stress reaction.  Today I got that sensation when I was playing my sax, trying to memorize a piece. I so struggle with memorization-always have-from the days of anatomy and trying to remember bones.  Anyway, I thought,why the heck am I feeling this stress reaction playing music?  I’ve felt it more often lately-stress at work mostly. It affects my sleep, I struggle to focus. It’s an energy sucker. I only have so much gas in my tank-I hate wasting it on this stress reaction. What can a person do? I’m not one that’s had success with meditation. There are some interesting tricks:  I do love the one of pressing on the space above my upper lip below my nose.  I think it’s so comical it helps for a second, but doesn’t last past the press. Focused breathing deeply always works, but again doesn’t last. Talking to someone, getting whatever off my chest occasionally works -and it lasts.  There’s compartmentalization, denial – I’m not too good at those either. My PCP gave me Ativan to take before I go to bed, but I haven’t tried it. Actually, just having it in the cabinet has almost eliminated my need for it. Powerful stuff, eh – proximity without ingestion. Stress is a part of life. Unavoidable, part of the human condition. The challenge is to keep the cycle short, less frequent.  How do people manage who have this sensation all day for days, weeks, months, years on end?  Must be crazy making. Managing stress is a magic lever of best health.

Belonging to your health team

By Advocate, Caregiver, ePatient, Clinician, Consumer One Comment
Belonging to your health team. Seems oxymoronic. Of course you belong to your health team. There is no health team without you. Yet sometimes people feel out of control, not accepted by their team. Maybe it’s because it’s not their team. Professionals and caregivers sometimes act as if or really feel that they are the team, separate from the people they serve. Today I received an e-mail report from a friend describing the meetings of the team caring for her husband with ALS (Lou Gehrig’s disease). The hope, the optimism, the details of how to manage, the welcoming, warmed my heart. The key is the welcoming across a threshold. Before the professionals weren’t part of their team. After they were. Just like that. Same day, I received an email describing the separation, frustration, lack of communication, of a friend caring for her husband who had surgery. Although the outcome was good – successful surgery – she seemed glad to be away from those professionals. They were never part of the team. How do we as ePatients welcome professionals onto our team?  How do professionals acknowledge that they have joined ePatients’ teams?

Giving Thanks

By Advocate, Caregiver, ePatient, Consumer, Family man One Comment
My super power is accepting what is. Doesn’t mean I settle for what is. After all I’m a catalyst for change. Accepting and appreciating what is makes for a solid foundation and a realistic start. I can’t get from here to there if I don’t know – and value – where here is. I give thanks for my super power. I didn’t do anything to get this super power. No degree for it, no lightening strike – I was born with it – lucky genes and family history, felt safe growing up. I give thanks for (value) clean drinkable tap water, regular garbage pick-up, laden grocery shelves, the sun shining as often as it does. I give thanks for my sons, their wives, my grandkids, my extended family, my home life, my inspiring co-workers, my health and especially, my honey. I give thanks for the health problems our system has – I don’t live in a refugee camp outside Syria.

I give thanks, for you, my loyal readers.  I look forward to this virtual community every week that welcomes my musing on the magic levers of best health. Happy Thanksgiving!

Test driving and consent to share

By Advocate, Caregiver, ePatient, Consumer 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, Leader, Consumer, 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, ePatient, Clinician, Leader, Consumer 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.