Category

Informaticist

E-Patients, experts with lived experience

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

This week I connected a patient with expertise in billing with a patient at the tail end of chemo struggling with huge unexpected bills. I introduced a cancer survivor with web design skills to a patient advocate setting up a new blog.

I’m struck by the breadth and depth of professional skills I encounter as I explore e-patient communities. (e-patient: empowered, engaged, enabled, equipped).  e-Patients have lived experience. I encountered the concept of lived experience first while working in the mental health world. According to the Mental Health Coalition of South Australia (MHCSA) a lived experience worker is “a person who is employed in a role that requires them to identify as being, or having been a mental health consumer or carer.” Read More

Queen for a Day

By | Caregiver, ePatient, Informaticist | No Comments

If I was queen for a day, with a genie, and a clean slate…

 

The practice management staff of XYZ clinic routinely runs a program of all their patients’ data to predict those at risk for needing urgent care or hospitalization. The practice contacts Alice (one of many such patients or caregivers) pointing them to their practice portal or speaks with her on the phone with the module open to them. A module in the portal or caller from the practice asks Alice to confirm the accuracy of the data and allows or asks her to correct or fill in information used in the screening program. Alice can type or speak her responses. The module or caller asks questions about the current status of her treatment plan (activity, diet, meds, appointments, etc.), her current abilities and symptoms, and asks her if she has questions. Depending on the answers, Alice may be instructed to go to an Emergency Room. If she needs Urgent Care, another module opens up to a clinician immediately available by video who has access to the same data as Alice and her answers to the clarifying questions. They discuss her status, make decisions, order tests and meds as needed and update her treatment plan. If she needs neither emergent or urgent care, her next appointment at the clinic is confirmed or scheduled and Alice is reminded of her treatment plan and schedule and pointed to activities and community resources that may be of value in the meantime. When Alice arrives at the clinic, her clinician views the entries in the portal module with her and they discuss her status, make decisions, and update her treatment plan. For any of the scenarios, Alice’s questions are answered live or via the portal. Costs and out-of-pocket expenses are included. Read More

Cinderblocks4 – Medical Advocacy at its Best

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

 

Pound for pound, the best health conference! A rare combination of small, local, action-oriented, inspiring networking, and relaxing. 40-50 attendees met in Grantsville, Garrett County, MD, population 766, for three days. Regina Holliday of Walking Gallery fame organizes and breathes life into Cinderblocks. The older I get, the more I seek people who collaborate to solve local problems that matter to them.   50% of the 30 presentations were literally local – from Garrett County and immediate vicinity. The rest came from as far as France and LA, Oklahoma, Texas, Boston, and DC to learn what works for each other. A sample: Read More

Precision Prism

By | Advocate, Caregiver, ePatient, Informaticist, Researcher | 2 Comments

I’m the son, Custodian, and Healthcare Proxy of my 89-year-old mother, Alice. I live in a different state. My mother has diabetes and is depressed. Her care team, besides herself and me, includes medical providers in various health settings, community support agencies, and a full-time caregiver that helps her schedule and get to health-related services. My problem is to understand what my mother wants for herself and to track who says they’re doing something for her (including my mother and me), what they’re doing, and when they’re doing it. I want to know what it takes to do it (Can she afford it? Can she get there? Does it agree with her? Who will be with her? etc.). I want to know if the actions have the effects we thought they would. I want to know what her risks are and how we plan to prevent or respond to them. I want to able to keep track of all this and keep it current. I want to share it or have it shared from day-to-day and from setting to setting even if I’m not present. Read More

Resist, Fund Me, Change, Join, Decide, Click, Lead

By | Advocate, ePatient, Informaticist, Leader, Researcher | 3 Comments

 

The pervasive drumbeat of Calls for Action in healthcare overwhelms me, excite me, bewilder me. I’m wired for action. I have to listen and consider or shut it out. I have no middle ground. There’s a limited amount of gas in my tank. I feel protective of my retirement dollars. And I still need to take out the garbage and do the laundry. Do I want to respond? Am I able to respond? What am I really responding to? How much is enough? Does it align with my mission? Will it be fun? 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

Interview: Danny on Urgent Care Radio

By | Clinician, ePatient, Family man, Informaticist, Leader, Uncategorized | No Comments

As many of you already know, on January 7, 2017, Minda Wilson interviewed me on the URGENT CARE radio show. Here’s a link to the episode. I recommend the show, URGENT CARE. Many good interviews of caregivers, patients, clinicians, and policy experts. Minda, a health care attorney, knows her stuff. URGENT CARE is one of many shows on Radioactive Broadcasting. Let me know what you think of the interview!

For those interested, here’s  my full 2016 Annual Report

Download (DOCX, 222KB)

. Read it to know what I’ve been up to in this 2016 transition year. I’m grateful to all of you!

Health Hats – 2016 in Review

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

I’ve been feeling my oats in 2016 as an advocate and catalyst for Empowering people as they travel together toward best health. As my dear friend, Mary Sue said, Danny, you’ve found your calling! Wearing my many hats, I often feel like I know enough to be dangerous about much of healthcare. When I walk into a room of experts in their fields – clinicians, researchers, policy makers, techies, insurers, executives, I think, What am I doing here? I’m way over my head. It takes two minutes to understand that I’m the connector of their considerable expertise to the workflow and life flow of patients, clinicians, caregivers, and staff. I’m also the translator among their jargons. I can shift the conversation by offering a voice for some experiences of patients, caregivers, and clinicians.

I’ve refined my work this year as a connector, translator, and advisor while working as a technical expert in patient-centered research, behavioral health information technology, community health, and health payment innovation. I’ve benefited from the warm embrace of Wellesley Partners during this transition year after leaving my 40+ years as an employee and boss.  I am grateful that they believed in me and helped me polish a few rough edges of inexperience. I also appreciate the counsel of many – Doug, Geri, Pat(s), Juhan, Bevin, Eve, Jarred, Keren, Jonathan, Sarah, and Lauren to name a few. You all know who you are. Thanks. I’m grateful for the many inspiring people in the patient/caregiver/clinician experience space. Thanks for all you do. You keep my embers glowing. Read More

Recommit for the New Year

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

At year-end, I’m still on a mission to Empower people as they travel together toward best health. (Patients, caregivers, clinicians, direct care and support staff, communities)

  1. To understand and support each other
  2. To balance workload and capacity
  3. To achieve the best outcomes
  4. To communicate effectively during transitions of care
  5. To learn and share what works

These days more people in the health industrial complex listen to the voice of the patient, caregiver, and those others who care and serve. But the listening isn’t consistent. And the doing something sensible is sporadic and not often widespread. It’s gone from bleeding edge to just edge. I’m consumed with learning how to move this scary disappointing healthcare system an inch even though it needs to move 10 miles. I’m satisfied with the inch. The 10 miles is too much to fathom. I’m more aware than ever of having progressive conditions – MS and life. There’s a limit to what I can do. Read More

Person-Centered #CarePlanning – What Data?

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

More about person-centered #CarePlanning. (If you missed my first post go here)

Our health teams struggle to communicate at transitions (between team members, when adding a new team member, between people, offices, and settings) – it’s a perfect tower of Babel.

In its simplest form communication is who, what and how.  Who needs to communicate? What do they need to communicate? How will they communicate?

#CarePlanning focuses on the whatWhat are the goals of the person on the health journey? Who’s going to do stuff to get there? When? How will these goals and activities be tracked and shared across time and settings?

Let’s engage to better understand #CarePlanning from the point-of-view of the person (mostly as patient, sometimes not; usually including family and/or caregiver), rather than from the point-of-view of the doctor, the hospital, or the insurer. What does the person want to accomplish, who on their team (including the person) is going to do what? by when?  Let’s also narrow our focus to #CarePlanning that can be to communicated during transitions between settings rather than within settings (For example,  between home and clinician office, between hospital and rehab center, between home and work or school. Not within the home, hospital, clinic, or agency). Next, let’s look at #CarePlanning during illness rather than wellness or prevention. Edward Suchman (1965) devised an approach for studying illness behavior with five key stages of illness experience: (1) symptom experience; (2) assumption of the sick role; (3) medical care/healthcare contact; (4) dependent patient role; and (5) recovery and rehabilitation. (my italics added).  Finally, let’s be sure to include the social determinants of health or as us non-academics call it, life. Read More