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Consumer

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.

Just-in-Time Decisions

By Advocate, Caregiver, Consumer, ePatient No Comments
  1. Is there a chance that focus beam brain radiation will make a difference to quality of life for a terminal patient?
  2. Will the treatment prescribed (any treatment) cause depression?
  3. Will acupuncture make a difference?
  4. Will all this attention to one family member negatively impact the other members?
  5. What do I do when my doctors disagree?
  6. Can we afford…
Making a decision based on evidence at the time decisions are needed is a challenge for e-Patients and e-Caregivers. Participating in PCORI (Patient-Centered Outcomes Research Initiative) and S4PM (Society for Participatory Medicine) heightens my awareness of the importance of evidence for decision-making and the misalignment of much evidence with the decisions facing e-Patients and e-Caregivers. The medical model of research favors a focus on body parts, diagnoses, and medical treatments. The dissemination of that research favors positive results and academic journals. No access to what didn’t work. Need to rely on advocacy groups and social media for readable and understandable evidence. Recently, several of us made a proposal to the PCORI Board in Boston:
Expand the scope of fundable research questions to include non-diagnosis related questions:
  • Identify mechanisms and key success factors of patient-professional partnerships, patient engagement (actions individuals must take to obtain the greatest benefit from the health care services available to them), care coordination, shared decision-making
  • The impact of peer-to-peer (patient-to-patient, family-to-family, caregiver-to-caregiver) relationships
  • The impact of social determinants (conditions in which people are born, grow, live, work and age, including the health system) on best health
What do you think? What are the magic levers for this change?

Hardwiring Continual Learning

By Caregiver, Consumer, ePatient 2 Comments
I’m learning to type. Amazing after all these years that I still hunt and peck. Cool though to know that I can still develop new brain pathways and muscle memory. Continual learning with a swiss cheese multiple sclerosis brain:)  I watch my grandsons learn, they just keep at it. Fearless repetition. Why is it that I’m reluctant to learn from others’ experience? When I first had kids, I was told to kiss my life as I knew it goodbye. I didn’t believe it, I didn’t learn from those ahead of me until a week after my oldest was born. Now with health care, seldom do we learn, or rather seldom do we have sustained learning. After decades in health care I feel like I’m seeing the same stuff recycle.  Is patient centered really new? Aren’t ACOs a retread? Quality Management is still only good management. Although there is a treasure of science of best practices, we know that clinicians struggle to keep up, break inertia and change practice based on evolving evidence.

Hardwiring continual learning is a magic lever for best health for individuals, organizations and the health care system. Personally, I only have so much energy and space for learning. Inertia is critical to getting on with life.  Success is inertia for what works, learning for what doesn’t. Continual learning requires mindfullness. How do we design continual learning into our lives, our relationships, our products, and systems?

System Magic Levers of Best Health

By Caregiver, Clinician, Consumer, ePatient, Leader No Comments
I am an e-patient, a caregiver, a nurse, an informaticist, and a leader.  I live and work where the patient, the caregiver, the clinician, and technology intersect. Writing this blog for the past six months has helped me focus on magic levers of best health. The magic levers of best personal health include: Rest, diet, exercise, resilience, network, team, trust, mindfulness. The magic levers of best organizational health: leadership, purpose, alignment, trust, vulnerability, mindfulness, learning, execution. How about system magic levers of best health?  Here’s my first stab at that:
  1. Mutual goals and plans set by the health team (people, their caregivers and clinicians)
  2. Tools and relationships maximize the health team’s ability to follow the plans set to meet mutual goals
  3. Accessible evidence supports just-in-time health decision-making by people and their caregivers
  4. The entire health team works from the same goals and data set
  5. Transparent health care costs
  6. Healthy health care organizations
  7. Hardwired continual learning from evolving experience and evidence
  8. Financial and human incentive alignment
What would you add? More in future posts!

Personalized Medicine

By Consumer, ePatient 2 Comments
Yesterday, I attended a meeting of the Personalized Medicine Coalition.  As defined by the President’s Council on Advisors on Science and Technology, “Personalized Medicine” refers to the tailoring of medical treatment to the individual characteristics of each patient…to classify individuals into subpopulations that differ in their susceptibility to a particular disease or their response to a specific treatment.  Preventative or therapeutic interventions can then be concentrated on those who will benefit, sparing expense and side effects for those who will not. In English: At this point seems like mostly genetic markers (referred to as variances) that point to specific treatments for some cancers. Helps the doc pinpoint chemo for a specific genetic make up of some cancer cells. The field is young. 13 examples of personalized medicine in 2006, 72 in 20011.

I found a group of scientists, clinicians, pharm reps, patient advocates, investors, and insurance companies. Very aspirational – full of the potential and possibilities of personalized medicine – much like the aspirations of big data and mobile health technology. Some meat, lots of motion. Well funded.
I was curious about how the patient was involved in #PersonalizedMedicine. Met @JackWhelan, an e-Patient who benefits from #PersonalizedMedicine – saving his life! Also met Brett Johnson @waroncancer from the International Cancer Advocacy Network. Genetic counselors work with patients. Sometimes the genetic testing discovers a variance without an associated treatment. A dilemma is whether to contact the patient/physician in the future as more information is learned. Researchers are challenged to go back to extract longitudinal data (data over time from the electronic medical record) from those patients with the newly discovered marker/variance. I didn’t find researchers/scientists well integrating e-Patients into their research process – but my sample was small.
An exciting area to keep tabs on. Do any of you have experience with #PersonalizedMedicine?

So Many Decisions

By Caregiver, Consumer, ePatient No Comments
So many decisions to make in the journey toward best health. Should I take this medicine, should I have that surgery, should I stay home from work, should I worry, should I use a cane, should I tell my employer or my spouse, should I  eat this, should I buy that insurance, should I see both doctors on the same day, and on and on and on. Clinicians and e-patients approach decisions so differently. For clinicians its studies published in academic journals that show an increased likelihood that x works better than y for a specfiic population. It’s habit and common community practice. For e-patients it’s often spur of the moment decisions, trusting someone. It’s about me.

Yesterday, I attended the Board meeting of PCORI (Patient-Centered Outcomes Research Institute).  I wrote about PCORI in a previous post. PCORI could transform some research about health. See the notes of the meeting  here. A group of e-Patients made three recommendations to the PCORI Board in the public comment period:
The PCORI Board addressed the challenges of being patient-centered several times in their deliberations. They asked, what is a patient? Is it someone who is sick or caring for someone sick? What about the well – the worried well, or those preventing sickness?  Should patient engagement in research mean that patients should speak to each other in patient advisory groups or should they foster melding of the silos of patients, researchers , advocates, vendors, and providers? How should they foster and hear advice from patients? What projects should they prioritize that are most likely to impact patient engagement and experience?
So many decisions to make in the journey to best health.

e-Patient Expert

By Consumer, ePatient, Leader No Comments
When does an #ePatient (empowered, engaged, expert, enabled, equipped, emancipated) become an expert? Expertise=skill or knowledge in a particular area. When does an e-Patient have confidence in their expertise. How does the dynamic change when faced with a professional’s expertise? My 4 year old grandson corrected me recently when I suggested that his vegetarian aunt was an herbivore. No, he said, she’s an omnivore – she can eat meat. He certainly knows more than I do, has confidence in his knowledge, and asserts himself with his knowledge. He’s an expert about dinosaurs, isn’t he?

Scents of Commonality

By Caregiver, Consumer, ePatient, Family man 2 Comments
I am the child of holocaust survivors. Recently I’m hearing more about my mother’s life as a German Jew in hiding in Netherlands for her teen years. It strikes me as an empowered, engaged ePatient how our different life situations change the meaning of ePatient. In her case, survival was paramount, then boredom and fear. Isn’t that health? She tells about surgery for my grandfather on a kitchen table. Wasn’t she an ePatient? What I think of as health is very different. I am white, comfortable, loved, with little fear. I’m a worried well person with a chronic disease. I focus on other portions of the health continuum: meds, appointments, weight, diet, balance, stamina. My friend Cristin Lind’s blog Durgatoolbox dramatizes this lopsided continuum in her son’s care map.  The similarity for each scenario is that best health is hugely more than medical institutions address. No matter how much I try, I can’t get my brain around what my mother experienced. I can’t get my brain around what Cristin and her family experience.  Yet I can pull threads of understanding, empathy, compassion. Scents of our commonality. How do we share ourselves as we are ePatients? How can we help professionals on our teams pull those threads, whiff those scents?

Leadership of My Health Team

By Consumer, ePatient, Leader No Comments
I was reading a white paperAn Accountability Architecture for Success, by Wellesley Partners, comparing military success to health care success: Working together as part of a team, applying their specialized knowledge toward a common goal and Define success based on data-driven, results-based metrics; put someone in charge; and hold people accountable. Does this apply to my health care? I have a team, we periodically set common goals. We try to be data driven, we track certain metrics. But who’s in charge and how do we hold each other accountable? Ideally, I, the patient, am in charge. But in reality its a moving target. When we’re kids our parents are in charge, this shifts as we become tweens, and shifts again when and if our mental acuity deteriorates accidentally or progressively. When does the professional take charge? Do we allow this because that’s the way it is or does it happen because the decisions of the moment seem beyond our abilities or energy level? Is the team clear who makes the decisions? Shared decision-making still means that a decision is made. Can I effectively progress in my health journey when I’m not clear who’s in charge and how we hold ourselves accountable? With my team I make the decisions. If I’m the leader and making decisions, then I must be accountable. I’m accountable to follow the path we set. Upstream, professionals and the offices and institutions they work in are accountable to share data with me and help me interpret the data to set the path. I’m accountable to expect that data, seek other data, and participate in turning the data into information that helps us set common goals. The rest of my team is accountable to help me meet the goals. It feels awkward for me, a knowledgeable, empowered, and energized patient, to talk with my team about decision-making and accountability. We have lots of work to do.