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Advocate

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?

Shared Decision Making Month

By Advocate, Caregiver, Clinician, ePatient, Leader No Comments
According the Informed Medical Decisions Foundation shared decision making (SDM) is a collaborative process that allows patients and their providers to make health care decisions together, taking into account the best scientific evidence available, as well as the patient’s values and preferences. March is Shared Decision Making month.

 
I have written extensively about the relationships and behavior among a person’s health team as it impacts the course and experience of the health journey. The team – patient, caregivers, clinicians, loved ones, and helpers – set goals, research options, select treatment, share information, coordinate, celebrate, grieve, and wait  together. Shared decision making is part of team work. Read More

Managing medications: Experience of empowered & engaged partners

By Advocate, Caregiver, Clinician, Consumer, ePatient No Comments

Managing medications – the most frequent interaction between health team members – includes both the clinical aspects of our health journey and the behavior of health team members. Medication management that works depends on empowered, informed patients and their caregivers prepared for clinician visits, and engaged, collaborative clinicians skilled at working with activated patients. Unfortunately, current management is often haphazard, disorganized, time-consuming, and frustrating with a heavy dose of paternalism in complaints about lack of “patient adherence.” If managing medications worked better we could see better patient safety, improved health outcomes, and a positive impact on life flow and work flow. The challenge is so widespread and so fundamental. How can we systematically approach the opportunities in medication management to find the right tools and methods?C:\Users\Dvanleeu\AppData\Local\Temp\enhtmlclip\Image.gif

First we need a framework for analysis, then a list of relevant activities that would benefit from tools and methods, and finally, we need to recognize success. So jump in: Read More

Book review: Far from the Tree

By Advocate, Caregiver, ePatient, Family man No Comments

Andrew Solomon’s Far From the Tree: Parents, Children, and the Search for Identity covers stories of diverse caregiver experience; parents with exceptional children: children with deafness, dwarfism, Downs syndrome, autism, schizophrenia, or disability. Others are caring for children who are prodigies, transgender, conceived from rape, or committing crimes. It is a rich and exhausting tome (962 pages) — profoundly sad, exhilarating, and inspiring. Solomon interviews more than 300 families navigating a journey they didn’t choose, caring for their children, facing unexpected challenges. What can those of us committed to participatory medicine learn from their experience?

More? See the full review here in the Journal for Participatory Medicine
van Leeuwen D. Book review: Far From the Tree. J Participat Med. 2013 Feb 18; 5:e8.

Reading your own EKG?

By Advocate, Consumer, ePatient, Family man No Comments
There’s been a great thread on Dr. Wes’ blog and the Society for Participatory Medicine’s  list about patients obtaining and reading their own EKG’s.  As you can imagine – lot’s of pros and cons. A significant difference noted between the right to have the information (tracing) and the ability to interpret the tracing and use it to guide health management. The first is black and white to me: of course we can have our EKG’s. The interpretation and use of the interpretation is more grey.

When my son was 10 years old I was heavily involved in teach Advanced Cardiac Life Support ACLS (25 years ago).  We home schooled. I took him to most of the classes I taught – 20 or more of them over a couple of years.  He became very interested and studied the heart rhythms (EKGs), intubation (putting a breathing tube in through the throat), the algorithms (procedure for managing a code including recognizing heart rhythms, selecting the correct medication, and breathing), and leading a code. He studied and rehearsed a lot. He passed the test! He put some physicians, including cardiologists to shame. I’m not sure of the implication of this anecdote, but it fits somehow.
I find it ironic that we can question owning and possessing our health information more than owning a gun. What is wrong with this picture?

Innovation

By Advocate, Leader No Comments
Innovation: such a pregnant word. Innovation usually accomplishes something pretty basic – a solution to a problem we know or don’t know we have, a new or long standing problem. Innovation can be a tool, a process, technology, or a service. Innovation includes widespread use of the solution. Setting diagnostic or clinical treatment aside, the health journey for the whole team primarily involves people: behavior and relationships. Innovation in health behavior and relationships leads us to magic levers of best health. This week I heard about primary care teams that weren’t built around the licensed clinicians (physicians, physician assistants, nurse practitioners, nurses) The key people seemed to be the patients, their caregivers, and the offices’ health coaches (5-7 coaches per clinician). Patients have assigned coaches to partner in their health journey and serve as a bridge to services and clinicians. I was hearing about Iora Health and Mass General’s Center for Primary Care Innovation. This could be innovative! It’s a magic lever. Phew!

I say could be because the challenge with so-called innovations such as health coaches is to accomplish  widespread availability. What did it take to nurture that potential innovation and how does it spread? Well, somebody was dissatisfied with the status quo, became an entrepreneur and had the gumption to find or create a space for the idea, process, and service to germinate and flourish. The entrepreneur(s) had to align incentives (funding to develop a test and a payment model to feed the service) in a market that needed and wanted the result. It takes a very different kind of change agent to create and pilot something than spread it.

Engage! Will patient engagement achieve “warp speed” this year?

By Advocate, Caregiver, Clinician, Consumer, ePatient, Leader No Comments

Engage! Will patient engagement achieve “warp speed” this year?

A fascinating HIMSS LinkedIn thread started by Brad Tritle (@BTritle) on January 9, 2013, with 100 posts through January 23, 2013 by 46 Individuals (31 single post, 15 multiple posts) – 18 pages. The full thread can be found here. I had great difficulty categorizing and summarizing. I started trying to use the National eHealth Collaborative, Patient Engagement Framework: Inform Me, Engage Me, Empower Me, Partner with Me, Support My e-Community. The exchange was more: Culture/lifestyle, Experience/literacy/diversity/education, Reimbursement/incentives/cost, Community/coordination, Clinician engagement, and Access/technology/interoperability/portals. The thread included 24 links. They are compiled here. The extract can be found below. Here are some pearls: Read More

Open Notes

By Advocate, Clinician, Consumer, ePatient No Comments
What information is there about me in my medical record? There’s certainly diagnosis, medications, procedures, allergies, treatment plans, referrals, diagnostic test reports (labs, radiology, EKG, pathology). I have more access to that information these days through visit summaries given at the end of the visit and on the different portals my providers have. But what about the notes they write? What is in those notes? How the plan /medications are working, my mood, concerns about my safety or my ability to think clearly, questions I ask with the answers given, calls the clinician makes about me, calls they receive about me, their thought process as they manage my care.  I can legally obtain these notes now by asking for a copy of my full medical record, but its cumbersome, complicated, costs money, and very, very seldom done. The movement to give us access to these clinician notes through a patient portal is called, Open Notes. (for more information click here) The VA and several hospital and physician clinic systems have committed to Open Notes. A study in the Annals of Internal Medicine (click here) was done that found  Patients accessed visit notes frequently, a large majority reported clinically relevant benefits and minimal concerns, and virtually all patients wanted the practice to continue. With doctors experiencing no more than a modest effect on their work lives, open notes seem worthy of widespread adoption.

I receive some of my care at one of the Open Notes pioneering institutions, but I see no notes on my Patient Portal. I will ask next week when I see the specialist. I completely support the Open Notes initiative. I want access to anything about me. I do have some thoughts and questions though:
  • As a clinician myself, having read tens of thousands of notes, it’s hard work finding relevant information in those notes. Clinicians don’t all write in an informative manner. Abbreviations abound. It will be interesting to see how note writing evolves as Open Notes proliferate.
  • Can I challenge an error? This is no different than errors in my medication lists or vaccinations. I have tried to correct something in my record with no affect. This will continue to be a challenge.
  • Will clinicians continue to write about concerns with my safety and state of mind? Read more about this here.
Have you experienced Open Notes? What do you think about access to Open Notes?

Magic levers of cultural change

By Advocate, Caregiver, Clinician, Consumer, ePatient, Leader No Comments
I’m traveling these days in many bands of committed people and groups striving to improve the health journey for themselves, their loved ones, and patients in general. These bands include advocates, novice and seasoned entrepreneurs, trade associations, providers of care across the continuum; and governmental and quasi-governmental entities. Each band slogs through terrain of incredulity, frustration, anger, hopelessness, and desperation with winds of dedication, confidence, hope, and possibility at their backs.

While traveling in these many bands, I periodically step aside to rest and contemplate change – process and cultural change. What do I expect, what do I want, am I using my limited energy wisely? Frankly, I don’t expect much. Cultural change in a complex system with nonsensical incentives, without clear leaders, with so much money, and seemingly stuck in cement is a bitch. I just aspire to a little better, some of the time. I want my family and fellow travelers to get the care they need, when and where they need it. I want to have fun while traveling. My personal energy is holding up – so far so good. But is my energy being used effectively? Do I make a difference

Electronic Medical Record Design Challenge

By Advocate, Caregiver, Consumer, ePatient 2 Comments
The Office of the National Coordinator (ONC) of Health Information Technology (HIT) – part of the Department of Health and Human Services (HHS) announced the winners of the Electronic Medical Record (EMR) Design Challenge. See the winners here. The design goals included:

  1. Improve the visual layout and style of the information from the medical record
  2. Create a human-centered design that makes it easier for patient to manage their health
  3. Enable health professionals to more effectively understand and use patients’ health information
  4. Help family members and friends care for their loved ones

The categories include best overall design, best medication design, best problem/medical history, best lab summaries, and designs that challenges the judges. All amazing and artful. Take the time to at least scan the possibilities and compare to the EMR(s) you use.

I’m excited. Design is huge. These designs stretch my idea of the possible. Thank you ONC. However, I’m hesitant to get too excited. While design and format are necessary and important links in the chain for usable EMRs, they are not sufficient. The people with complex chronic diseases are heavy users of EMRs, often with multiple EMRs that don’t talk to each other (interoperability). I have info in 3 EMRs. Can these designs handle complex health issues? What is the bidirectional nature of these designs? Can e-patients and caregivers enter information and correct information? I would also like to hear more about how the winners involved patients and caregivers in the design? How will the designs adapt for non-English speakers? Will these designs help the relationship/communication with clinicians? Let’s follow this and see how these designs are implemented. Let’s look for the design backstories.