Interview with Jill Woodworth, mother of 4, three with Tuberous Sclerosis, managing the transition from pediatric to adult medical care. Fascinating, frustrating, heart-breaking, and inspiring. Silos and boundaries, crossing the threshold, primary physician, autonomy, self-management. One of the scenarios with the most boundaries, cracks, and thresholds is where young adults with complex medical conditions transition from pediatric to adult care. “If there’s any communication, that has to go through me. Unfortunately, I have to network that system and that’s just really cumbersome.” “I can also help other people that have questions about how to transition. I’m certainly not an expert. But boy, it is something that I wish I always say do it the earlier the better. The earlier you can think about it the better.” “He’s learning. Like I taught him to get his own meds, you know, it’s kind of meeting each one of them where they are and what they can do. But it’s hard.” Read More
I received my medical marijuana card from the Massachusetts Department of Health a couple of months ago. I hoped that I could find some additional solutions for cramping, neuropathy, or insomnia. It’s a different world from my 20’s. Then I wanted a recreational high. I never bought pot, just smoked what other people offered. Now that I’m in my 60’s and part of the research industrial complex and the patient/caregiver activist scene, I find this exploration more than curious. The physician I saw for the card, didn’t give me a prescription. Told me about different modes of taking cannabis, a list of the dispensaries in the state, and left me with: People react with such variation. It’s an experiment. Let me know if you have any questions. Imagine that for high blood pressure? I go to a pharmacy and say, I think I’ll try this…
I see on social media that many people rave about the positive effects of medical marijuana. They almost never say what strain, what route, what dose, what effects (intended and unintended), for how long, in what circumstances. Just that they’ve died and gone to heaven using cannabis. I celebrate that they found something that worked for them, but feel no assurance that it might work for me, or what actually worked for them. I’ve reviewed two compilations of research, one from Canada and one from the US. I picked a relevant, seemingly well done, study. I went to four different dispensaries run by three different companies. I asked an earnest young person across each counter about a specific cannabinoid (CBG, CBC, CBD, THC, CBDL, CBN) or terpene that I saw in a study. They sounded very confident while answering my questions but their knowledge seems underwhelming. I did meet one young person (the last of four) who answered, I don’t know. My expectations had become so low, I was excited by the I don’t know.
I understand that marijuana is a drug and like any other drug or therapeutic, the relationship between rigorous scientific comparative effectiveness research and me as an N of one is tenuous. As my first neurologist said, I know what drugs might work for certain groups of people with MS under specific circumstances, but I don’t know crap about you. I need to get to know you and what’s important to you. We will figure that out together.
I bought two different proportions of CBD/THC oil to vape, THC/CBD in peanut butter to ingest, CBD oil to rub on my skin over cramps, and CBD tincture to take under my tongue. Some of the ingredients are in milligrams, some in percentages. I bought a scale that measures micrograms. How do you compare mgs. and percentages? How do you compare smoke, tincture, oil, and peanut butter? It’s baffling.
I’m intrigued about this experiment of me taking medical marijuana. I’m trying to figure out how to keep track of what I hope to accomplish, what I’m trying, and what effects it’s having. I’m daunted. My spreadsheet is insufficient and too much work. I’m searching for and testing diary/journal apps. I spoke with a scientist friend of mine and together we’re skeptical that I’ll find what I need to conduct the experiment of me in a manner that I can keep up with. It certainly won’t be useful to anyone else. I’d love to be able to keep track of myself (patient-generated data) and have it feed into a larger data set of other people keeping track of themselves with analysts examining the data and us all learning together. I’m certainly going to need some help.
What a hoot. Never would have predicted I’d be here, doing this, at my age. Stay tuned. I’ll keep you posted.
Clinical decision support researchers, developers, and implementers this is for you. Clinical decision support (CDS) technology can maximize trust and engagement during decision-making if used to its full potential. Or NOT. Consider the patient and family perspective in making choices about pain management and opioid use CDS.
We know that often, clinical decision-making depends on the relationship between patients, the family caregivers, and the clinicians they interact with. We know that time and life flow greatly impact that relationship. The patient appointment with a clinician often lasts 10-20 minutes – sometimes less, sometimes more. That time is precious. The clinical visit for patients and caregivers represents a drop in the ocean of their health management. Clinical decisions live amid housing, child/parent care, transportation, financial and other life decisions. It’s seldom one decision, but repeated decisions. Think of taking a medication three times a day or following a diet. Only a small proportion of clinical decisions take place during the appointment. Most questions about clinical care or following the agreed upon plan of care occur before and after a medical appointment. CDS technology can maximize trust and engagement to inform decision making, but the effectiveness depends upon the information that is presented and how the CDS is implemented (e.g., when and where it is presented, how it is presented, who it is presented to).
I am a member of CDS Connect, a team of academics, researchers, programmers, clinicians, clinical leaders, informaticists, policymakers, patients, and advocates. Our work is funded by the Agency for Healthcare Quality and Research (AHRQ). The CDS Connect Repository demonstrates AHRQ’s mission of ensuring evidence-based research is clearly understood and utilized in clinical practice, by codifying and freely sharing evidence-based standards of care as CDS artifacts. In 2018 we are supporting clinical care related to pain management and opioid use.
This article provides insights on the patient and family caregiver perspective in making choices (clinical decisions) about pain management and opioid use in the face of uncertainties. That perspective includes the range of engagement experienced by patients and clinicians, recommendations for artifacts that would help, and some design considerations when researching, developing, or implementing CDS.
Patients and Clinicians Manage Pain Together
While there are 46 words for snow in Iceland, English has far fewer synonyms for physical pain (e.g., suffering, aching, torture, throbbing, discomfort, ache, sore, throb, sting, twinge, shooting, irritation, tenderness). Similarly, CDS that supports pain management should not take a one size fits all approach. Patient and caregiver engagement levels and perspectives vary as much as snow. Effective CDS artifact design and implementation understand this range of patient engagement:
Patient A: “I drive my own train”
I know my personal health and life goals. I’m the CEO of my health team. I trust my team. I want a plan to meet my goals and reduce my pain. I’m not afraid to lack knowledge. I’ll get it eventually. I’d appreciate answers to my questions when I have them. I can keep track of stuff, but welcome tools to help me do that.
Patient B: “I’ll do whatever you tell me to do”
I’m trying to manage life. I go to the doctor when I have to. I may or may not get along with the doctor. I don’t think he really likes me. I’ll try to follow instructions if I can [understand, afford, get there, remember]. Really, I prefer video, my reading of English isn’t that good. Maybe my grandson can explain it to me when I get home. I talk about medical problems [at place of worship], [at home], [with family/friends], [never]. In my culture, doctors are the boss.
And everything in-between.
And during all this, they are in pain. The severity of pain may impact people’s ability to engage with a clinician during an office, urgent care, or emergency visit. It is very likely to impact their ability to participate in decision-making and sort through all the information relevant to their condition.
Clinical care occurs in the context of a relationship between patient and clinician in an institutional setting (office, urgent care, emergency services). The variation in clinician engagement varies as widely as patient engagement:
Provider A: “What’s most important? My relationship with my patients”
I’m available when you need me. Tell me what you need and what you understood. Who is your care partner? Can you afford the care being discussed? I’m comfortable with choices, uncertainty, and risk and can explain it. I know when there’s a disconnect. I want to know and record the outcome of the decision we and others made. These CDS tools help me.
Provider B: “Just get me through the day, I’m so tired”
Here is a print-out with instructions. I’ve only got 7 minutes for this visit. I’ll get dinged if I don’t check the right boxes. What do you mean, you didn’t follow my instructions? Really, who cares? Where do these people come from? What am I supposed to do with this pop-up or instruction? It’s disruptive. I’m spending too much time in the EHR already.
And everything in-between.
CDS may be most effective when designed to match the level of patient and clinician engagement. Well-designed CDS that presents relevant information to the right person, when they need it, in a format that is useful and easy to understand, via the right channel (e.g., an EHR, a patient portal or perhaps a mobile app) is a feasible and realizable approach to bridging some of these divides – whether based upon motivation, skill, experience, or culture.
Patients could use your help to manage their pain, in partnership with their clinicians
Imagine CDS delivered via an app or a patient portal that is available 24/7. The “tool” displays a pain management dashboard comprised of the following information:
- Treatment goals – including physical function, behavior modification, and any associated milestones
- Plan of care – who’s doing what and when are they doing it (including the patient, their caregivers, clinicians, and ancillary care team members). This includes a calendar view of the plan of care, to more easily track and act upon each entry.
- An up-to-date list of all care team members (including the lead clinician for pain management and caregivers) with contact information and preferred communication methods and hyperlinks
- Links to moderated information and social resources tailored to the patient
This dashboard could support both patient perspectives described above – the “take charge” patient who wants as much access to their information as possible and the “tell me what to do” patient (or their caregiver) who might benefit from the information as a reminder of the plan of care. It also supports the patient’s clinicians by placing the patient in a better position to agree upon, track and comply with their plan of care.
Other patient-centric CDS tools may include:
- A pain tracking app integrated with the EHR
- Reminders of tests, activities, behavior modification plans, or prescriptions along with their status and any actions needed
- Mobile health technology used to present CDS, such as Telehealth or mobile apps
- A display of treatment options, the circumstances that led to those options, and the option chosen
Your Efforts Can Influence CDS Engagement, Acceptance, and Effectiveness
Patients, direct care clinicians, and those that support them need to have a seat at the table from the inception of the CDS – and provide their input during research, design, development, testing, implementation, and evaluation. Simple, intuitive, user-centered design is critical to acceptance and usefulness. Well-designed artifacts are developed with an awareness that frequently, the work of using these tools falls to caregivers and clinical support staff. Effective CDS is designed and implemented to support both patient preferences and clinical workflow. Rich involvement of all people at the center of care allows for consideration of their varied preferences, abilities, life flows and workflows, thus improving the adoption, impact, and usefulness of CDS.
This article seeks to provide insights into the patient and family caregiver point of view while making choices about pain management and opioid use. It accepts that one size does not fit all and considers the range of engagement experienced by patients and clinicians. It provides recommendations for CDS artifact development through actual use. The key is involving the people at the center of care in all phases of CDS development and implementation, including patients, their caregivers, and direct care clinicians. Embracing these strategies helps to ensure that ultimately, CDS will positively impact patient health outcomes.
I’m the child, 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, beside 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.
This scenario describes a vision of healthcare for a caregiver and his mother. The vision lives in a context of social circumstances, physical environment, individual behavior, genetics, and medical care – the determinants of health. In the best of circumstances, healthcare dollars pay for this vision of best health for people, their families, and communities.
The goals of any payment method should be to reward high-quality care and to permit the development of more effective ways of delivering care to improve the value obtained for the resources expended. These goals are relevant regardless of whether care is delivered in a predominantly competitive or regulated environment, and whether the ultimate purchaser is an employer or the patient/ consumer. Payment policies should not create barriers to improving the quality of care. Institute of Medicine (US) Committee on Quality of Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington (DC): National Academies Press (US); 2001. 8, Aligning Payment Policies with Quality Improvement. Available from: https://www.ncbi.nlm.nih.gov/books/NBK222279/
This means that payment systems for treatment and services recognize quality (best health), support improvement and reward stakeholders (patients, caregivers, clinicians, institutions, and insurers) for the process and outcomes of best health. Read More
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
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 [gview file=”https://www.health-hats.com/wp-content/uploads/2017/01/2016-Annual-Report.docx”]. Read it to know what I’ve been up to in this 2016 transition year. I’m grateful to all of you!