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adherence | Danny van Leeuwen Health Hats

Patient Engagement – Careful What You Wish For

By | Advocate, Caregiver, Clinician, ePatient, Leader, Researcher | 2 Comments

I’m often asked about my take on patient engagement. These buzzwords are losing their meaning. Frankly, I find myself at a loss to answer, even though I say patient engagement is my passion. Engagement from whose point of view?

  • A person engaged in their own health – Isn’t everyone engaged in their own health? My symptoms affect me. I’m in pain. I can’t function as I’d like to. I’m sad. I’m anxious. I react. I manage or I don’t. I can accept, deny, adapt. I suffer, I advocate, I overcome. Maybe it’s my parent’s health or my partner’s or my child’s  It’s all engagement. I’m engaged in my own health. So maybe that’s not the question.
  • A clinician engaged in their patients’ health. My neurologist said he’s an expert in what works related to treatments and therapeutics for populations of people with Multiple Sclerosis, but he doesn’t know crap about me and my life. He wants to learn about what’s important to me and about my basic habits and circumstances – transportation, finances, culture, and spiritual values, family, hobbies, exercise, diet…. He’s engaged in my health. What if it’s not about his engagement with me?
  • A patient engaged by adhering to their clinicians’ prescriptions and medical plans. Certainly, a paternalistic and common view of engagement. I’m engaged when I follow all instructions whether I understand them, can afford them or can get to them. Wait, maybe it’s not about the patient-clinician relationship at all.
  • Patients engaged in governance, design, operations, and learning about medical care delivery, policy, research, technology, and business. People at the center of care (patients, direct care clinicians, and the people that support them) sitting at decision and learning tables like boards, advisory councils, departmental meetings, product design sessions, insurance company business meetings.

The challenge of giving a serious nod to patient engagement is that few of us are really prepared for success. Being super engaged in my own health means that I’m the CEO of my health team and that I manage myself and my subcontractors well. It means that I have a care partner that can step in when I can’t – a succession plan. It means that I do everything I can to operate at peak performance.  All while I’m sick or disabled:( The clinician engaged in their patients’ health means that they solicit and accept their patients’ expertise and they have the humility to accept how little expertise they have in non-drug, non-surgery treatment, or actually, much outside their specialty – like the reality of people’s day-to-day life challenges. Increasing patients’ engagement in governance, design, operations, and learning leads inevitably to pressure for transparent price lists before service, seamless transition from one setting or clinician to the next, on-demand self-scheduling, patient and clinician controlled health data sharing, access to and payment for non-drug, non-surgery treatments, funding research about outcomes that matter to people, and on and on.

I think we need to be more specific about what we mean by patient engagement. And be careful of what we wish for.

Photo by Fineas Gavre on Unsplash with text added by Health Hats

Expanding Engagement and Capabilities of People at the Center

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

May I Have Some – Time? Please

Activated patient, nurse, with engaged doctors. Can’t reliably manage meds?!

By | Caregiver, Clinician, ePatient | No Comments

My medication lists don’t match and none of them reflect what I actually take. I have received doctor visit print-outs and seen on-line summaries in five doctor offices and two infusion centers in the past year. Each place does some sort of reconciliation at each visit. In one, a medical technician asks me what I’m taking while looking at the screen, making changes. I say I don’t take that anymore. That one’s as needed, but I haven’t taken it since my last relapse. That was stopped years ago and taken off twice before, etc. The doctor reviews the resulting list.  When I check the portal after the visit, some changes aren’t reflected. Other offices print out a list and ask me to write changes and return the list.   The lists don’t reflect the changes I made last time. No surprise – the portals don’t reflect any of the changes. Another asks me while looking at the EHR, this compounded medication isn’t on our list, we’ll leave the non-compounded version (a doctor in their system prescribed the change and directed me to a pharmacy to have it filled). One doesn’t allow my twice-a-year infusion to be listed as such (only allows the number of times a day). I have a moderately simple medication regime taking 4-5 prescribed pills and salves, twice-a-year infusions, plus 3-4 over the counter medications with three as-needed (PRN) meds. I use two local pharmacies, a mail-order pharmacy, and a compounding pharmacy, depending on which has the lowest out-of-pocket cost. I’ve never had an inpatient hospitalization. Read More

Patient-Centered Outcomes Research Institute

Reauthorize PCORI. We Need It!

By | Advocate, Caregiver, Clinician, ePatient | 2 Comments

I care about what works for people on their health journey. How do lay people make choices for themselves in partnership with their clinician partners? So much affects our health choices, not just our medical decisions, but our behavior, our communities, the environment and the systems we use to survive and live well. I’m very interested in research, but I’m also a skeptic: How does this study help me?  How does it help my family? How does it help my clinician partners? How does it help the people who support and care for us? We are the people at the center of care. Just because we found out that something might work in a lab, does that mean will it work for us? Read More

Should I or Shouldn’t I? Managing Uncertainty

By | Advocate, Caregiver, Clinician, ePatient, Informaticist, Leader, Researcher | No Comments

Have you ever remodeled your kitchen? So many decisions: Cabinet style, drawers, finish, hardware, not to mention the floor and appliances. There’s you, your partner, a contractor, a cabinet person, a floor person, the appliance merchant. Decision after decision – should we or shouldn’t we? And nobody’s gonna die or get injured – hopefully.  All while trying to keep living, cooking, dishes, lunches. My wife and I were so stressed.  Kitchen decisions pale next to health decisions, especially medical decisions. It’s not like, “do I prefer this drawer pull to that drawer pull?” “Would I rather have wood or tile floors?” There is so much more uncertainty in health care.

Why me, why now? Who says? How sure are they? What if I do? What if I don’t? Will I still be able to ….? Who pays? What will they think? How do I get there? What aren’t they telling me? Are they listening to me when I say I can’t or I won’t? I just can’t think right now! Oh, this sure sucks! Read More

Tales of Woe

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Leader | One Comment

From my memorable quotes pile:

Harried caregiver: What are we supposed to do next? Instructions from doctors, just getting through the day, plus dealing with bureaucracy? My word, I’m so overwhelmed. Everybody thinks their thing is the most important. Can’t this be easier for my wife and me?

Recently diagnosed patient:  I feel like crap. I want to follow instructions, I do. I thought I understood everything at the office.  Now I’m home, how do I get my questions answered? Read More

Personal Health Goals

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Uncategorized | 2 Comments

 

As a person with MS, I’ve written that my personal health goals are to progress as slowly as possible and do nothing that will mess with my pathological optimism. People I talk with about personal health goals say it’s not easy to come up with personal goals.  What do I mean? OK, people who are well want to stay well.  Those who are acutely ill (cold, broken leg, stomach ache, etc.) want to get over it. Those who have chronic conditions want to manage as best as possible. Here’s a stab at a list of personal health goals. Read More

Transitions – What you don’t know can hurt you

By | Caregiver, Clinician, Consumer, ePatient, Leader | One Comment

Still exploring communication across transitions.  This week speaking with clinicians. First, with case managers in an acute, short-term rehabilitation center serving people with recent strokes, heart conditions, or surgeries needing less than a month of intensive therapy. The transition points between nurses shift to shift, between physicians and between case managers, between patients, families, and primary care clinicians at discharge worked the best because they’re well documented and standardized. Tools are in place for the sharing of information. Either the hand-offs between clinicians are routine or patient education notebooks are completed the same for every patient: not the same contents but the same workflow. Since it’s not acute care (short stays)  there  is more for hand-offs and to develop relationships with the patient and their caring network and time for patients and families to absorb the instructions. A considerable volume of paper is generated, resulting in lots to read and lots to fax (everything by fax!). Maybe too much to read.  Information coming in with patients was less complete than information going out with patients. Communication was better in general and more complete if a person received all their care within the same health system.  The biggest risk? Not receiving information about critical medications, such as blood thinners, steroids, and antidepressants.

Next, a community Primary Care clinic. Again, communication best when a person is discharged from a hospital within the same health system as their clinic. Then a nurse knows when someone is going to be discharged or has been discharged.  The nurse calls the patient at home and can let the doctor know that the patient has their prescriptions filled, knows what to do, or if anything needs attention. For the patient discharged from a hospital outside the health system, the clinic often doesn’t know the patient was even in the hospital and has to scramble to gather information so they can support the person. The transition from home to office works least well.  Someone calls the office needing an appointment or has a question or needs a prescription filled. The quality of screening, triage, and information gathering varies widely  The more the patient or caregiver takes charge, the better the communication with the call center the better the clinic visit goes. Transition communication with specialists outside the system seemed quite a challenge without a common EHR for communication. Read More

Deconstructing the Tower of Babel

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

I’ve spent the week immersed in this communication dilemma in healthcare.   As I’ve said before, I’m amazed that any communication occurs in healthcare – a constant unfolding Tower of Babel. Way too big of a topic. Let’s narrow (as the solar system is a narrowing of the universe) to communication across thresholds and boundaries. Some examples:

  1. Between clinicians (same profession, same agency, same department): such as nurse to nurse, doctor to doctor, shift to shift, day-to-day
  2. Between professionals (different profession, same agency, same department): such as nurse to doctor, therapist to doctor, counselor to nurse, paramedic to nurse)
  3. Between clinician and patient or family caregiver (within a hospital stay or clinic visit or community setting)
  4. Across departments or levels of care (inpatient, rehab, home, clinic, emergency, intensive and long-term care,  are all levels of care) within a hospital, clinic, or system: such as clinician to clinician, direct care or support staff to anyone
  5. Across levels of care (everything in 4. above plus jail, homeless shelter, community residence, supported living)  sometimes called discharge planning, care management, consultations, questions involving just about anyone in the center of care.

Read More

Engaged with Sax

By | Advocate, Caregiver, ePatient, Family man, Musician | No Comments

Shopping for a new neurologist I had three screening questions:

  • What’s your response time to emails?
  • Do you use OpenNotes?
  • How would you work with my acupuncturist?

The first doc said, ‘I don’t use email, we don’t have a portal. What are OpenNotes? What do you mean you’re shopping for a neurologist? You either want me or you’re wasting my time.’ 

The second doc said, ‘If you email me, my nurse practitioner or I will get back to you within two business days. If you need us sooner, call my office.

Of course, we have OpenNotes. If I get something wrong, let me know. I know a lot about drugs and therapeutics and how they affect groups of people. But, I don’t know anything about you. My job is to learn more about you, and we’ll test different drugs and therapeutics and see what works for you. You are an experiment of one.

Oh, you use acupuncture? You’ll have to educate me. I don’t know much about that. I’m interested in anything that helps my patients. Seems like everything works for someone. And by the way, how’d I do? We could have some fun together.’
Read More

Changing habits – for people and payers

By | Advocate, Caregiver, Consumer, ePatient, Informaticist | No Comments

I love my health team. They help me stay tuned up with my chronic challenges and they get me through unexpected crises. Still, I  see them way too often. 3-5 times a month and I’ve never been an inpatient. Professional contact is a drop in the pond of my health. The rest of the time (also known as my life) I set and track goals and habit changes. I have questions about my plans and treatments. I deal with changes in my life that affect my ability to do the work of habit change.  I network and I research. I worry and I celebrate. I have tools to help me that are largely disconnected from my health team. I track steps with my iPhone, my diet with MyFitnessPal, the support communities of MyTreatment and PatientsLikeMe.  I can communicate with some professionals via portals and can receive one way data via OpenNotes, also with some professionals. Read More