What do I Need Electronically to Work With My Health Team?

By Advocate, Caregiver, Clinician, Consumer, ePatient, Leader One Comment
What do I need (must have) electronically to help me work with my health team?

  1. All team members (including me) operate off the same data set. This means that we know and agree what are the most important pieces of information about me (the minimum data set).
  2. That these pieces of information are collected somewhere, shared, merged, updated and corrected easily as needed.
  3. My health goals and plans to get there are explicitly stated.
  4. Able to track my progress to those goals.
  5. A safe, reliable way to communicate with my team members and my team members to communicate with me that works for me.
  6. A safe reliable way for team members to communicate with each other that gets recorded for me to see.
  7. Able to read, print, and transmit this information anywhere, especially somewhere unexpected outside my usual network-like an Emergency Room.
  8. Able to view notes my team members write about me.

What would I like to have?

  1. A description of how I react to pain and guidance for what works and doesn’t work to relieve pain for me.
  2. A description of how I react when scared and guidance for what works and doesn’t work to calm me down.
  3. Access to recommended places to get more information.
  4. Able to write notes with other team members or write notes myself that other team members can see.
None of these needs and likes are fully available now in spite of many years of effort and money spent on electronic records. The most progress has been made on #1 same data set, #6 safe, reliable communication, #7 read, print, transmit info, and #8 view notes. Many of these items are not even in the realm of discussion. Members of health team still mostly means doctors, nurses, and other acute care medical professionals, not community health or behavioral health providers. Still beating the drum for these magic levers of best health.

Health-Hats: It’s Been a Year

By Advocate, Caregiver, Family man One Comment
I started this blog a year ago, more than 70 posts – now settling into one a week. Thanks especially to Jane Saransohn-Kahn who set me on this journey, Eric Pinaud and Jodi Buckingham who provide technical support, and Kathy Pooler, who inspires me and encourages me to write regularly. My almost 100 readers provide me with feedback and encouragement. They range from caregivers, ePatients, and advocates to administrators, policy wonks, and techies. All wear more than one hat. Don’t we all? I’ve been a student of personal, team, and organizational health for more than 40 years. It’s a gas to reflect and comment on best health for the past year. I love to write. It’s only sometimes a challenge to find something to say. It’s often a challenge to keep it in the 250-450 words range and its always a challenge to remember the varied community I live in and write for. I thank you all for being with me for this study of magic levers of best health – so simple, yet so hard. On top of mind for the next year – caregivers, self-determination, data exchange, measuring success, life balance, and appreciating what I have. Wheeeee. Off we go. See you next week!

PCORI- Patient Centered Outcomes Research – and us

By Advocate, Consumer, Leader No Comments
You may remember that I’m a Patient Reviewer for PCORI (Patient Centered Outcomes Research). PCORI, a federal initiative, helps people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community. It’s vision is that patients and the public have the information they need to make decisions that reflect their desired health outcomes.  So far PCORI approved 51 awards, totaling $88.6 million over three years, to fund patient-centered comparative clinical effectiveness research projects. I’ve spent the last month reviewing applications for grants.  I can’t tell you about the grant applications that I reviewed but I can remind you why this important for us and give some observations about the process. Read More


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

My New Job

By Advocate, Leader 4 Comments
I’ve received many notes asking about my new job as VP of Quality Management at Advocates, Inc.  Advocates’ services are designed to meet the unique needs of elders, families and individuals with mental health challenges, addiction, developmental/intellectual disabilities, autism, brain injury and other life challenges. Advocate employs over 1100 staff members and serves 20,000 individuals at over 100 sites across Eastern and Central Massachusetts. The services include Residential Supports, Outpatient Mental Health and Addiction, Psychiatric Emergency Services, Home-Based Services for Children and Families, Community Justice, Advocacy, Benefits and Legal Services, Family Supports, Employment and Vocational Services, and Day Habilitation. At the heart of all Advocates services is a commitment to partnering with the individuals we support and, where appropriate, their family members, so that they can lead full and satisfying lives of their own design. We practice a person-centered approach that respects the unique needs, wishes and abilities of each individual. Read More

Trust- Another Magic Lever

By Advocate, Caregiver, Consumer, Leader No Comments

Recently, Joan Vitello, Associate Chief Nurse at Brigham and Women’s Hospital, inspired me talking about ‘trust’ at a nursing leadership seminar. I’ve thought about it every day since. Trust is a magic lever of best health – for e-patients, caregivers, professionals, teams, and organizations. Trust accentuates the possibilities: Trust that I’m OK, however I feel. Trust in my team members – they have best health in their hearts, whatever’s in their minds. Health is a marathon – trust fuels the fire of persistence – keepin’ on. I’m not a religious person, but I’m spiritual. Trust = faith. Having multiple sclerosis I know if I don’t use it, I lose it. Takes many times longer to regain it, if at all. Trust is like that. Lose it and need a recovery plan with help.

I’m in Boston. How many people, even those without a family member directly injured by the bombing, have lost trust in the rightness of the world? My four-year old grandson experiences an iPad video game differently – a little bomb to deal with. He pauses, takes note. A little innocence lost. Trust?
A valuable commodity – trust. May I take care of it wherever.

Clinicians are from Mars, e-Patients are from Venus

By Advocate, Caregiver, ePatient, Family man No Comments
Are clinicians from Mars and e-Patients from Venus? My experience is e-patients and clinicians can agree that they seek best health. Yet there is such a disconnect, such frustration, so much of the time. Participatory medicine strives to bridge the gaps between patients, caregivers, clinicians and health care systems. Caring about best health and getting to best health are very different.
In my journey with multiple sclerosis I find that each member of my very supportive and effective health team experiences the elephant differently. My physical therapist’s goal for me is to strengthen my left leg, ensure my ability to walk safely and balanced with a cane. My neurologist tracks my medication compliance and side effects, my limb strength, my brain scans, my exacerbations.  My primary care doc tracks my weight, my immunizations, my cholesterol, my liver enzymes. My acupuncturist balances my chakras. My wife watches my mood, my balance, my energy level. For my 2 year old grandson, its “Opa no go kaboom.” My 4 year old grandson wants me to be a jungle animal with balance. The health team views me through the lenses of their particular profession, skill, and compassion. I care about all these things, but they are not me. The parts do not make the whole. Most important to me is that I can live life: be with my family, play music, work, think, write, contribute. I don’t want to be more than a little bit of a burden.  Read More

Book Review: Engage! Transforming Healthcare through Digital Patient Engagement

By Advocate, Caregiver, Clinician, Consumer, ePatient, Informaticist, Leader 2 Comments
As a member of the HIMSS eConnecting with Consumers Committee that sponsored the book, Engage! Transforming Healthcare through Digital Patient Engagement I knew in advance how good it was going to be. My colleagues, the editors (Jan Oldenburg, Dave Chase, Kate Christensen, and Brad Tritle), have that valuable rare mix of profound knowledge, humility, and practicality. The expert, the novice, the lay person, and the clinician will find value here. It’s up-to-date, timely, spiced with foundational material that will be relevant well into the future. I learned something new in each section, but found the case studies most enlightening.

Each chapter ends with Why is patient engagement….good for patients; good for providers; and good for the system overall? The answers cover the spectrum from communication, to preventing mishaps, to meeting health goals, to understanding, to increasing loyalty, to reducing cost, etc.  Read More

Managing team culture from the inside out

By Advocate, Leader No Comments

In January I wrote about the magic lever of organizational culture change (link). Today I’m preparing for a nursing leadership seminar about organizational culture and change for people who lead teams in much larger organizations. While I mostly want to hear from the participants – sharing experiences has much more value than anything I could share – I have the following pearls:

  1. Be the ideal – act as you expect others to act – the golden rule. Simple but tough. You have most control of this
  2. Hire for culture – You can train skills, but you can’t train for attitude. The best opportunity is at hiring.
  3. Leverage diversity -build different skills, ways of thinking (Myers-Briggs), and life experiences into your team. 
  4. Experiment, learn with your teams – who knows what will work? Try stuff out. If it doesn’t work try something else
  5. Engage patients & caregivers – it’s the right thing to do, but it also changes the conversation dramatically 
  6. Be transparent with information – Whether you have grade A or grade C data – share it. Let people comment, criticize, engage. Tell stories. Welcome scrutiny.
  7. Market the change – You can’t change everything or everyone, but you can change the people who matter (the link takes you to Seth Godin’s blog)
What do you think?