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EHR

Putting Patients at the Center of Pain Management Decisions

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

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.

 One size does not fit allCDS 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.

Photo by Stefano Pollio on Unsplash

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Photo by Ashley Batz on Unsplash

Patient Ownership of Data?

By | Advocate, ePatient, Informaticist | 6 Comments

Do you care about health data ownership and want to stay abreast of national initiatives to wrestle with and solve ownership issues? If so, this post is for you.

What does it mean to own my health data? Is it like owning my car or my house? Is it like a copyright? Do I own it by myself or do I share ownership with the people or systems that enter the data (my doctor, the lab, my care partner) or store the data (the electronic health record, the app, the device)? Is it ownership or is it a right, like a civil right? I confess that I know this is important, even critical, but the more I explore, the less I feel like I understand.

Much to my surprise, I was invited to attend a National Academy of Medicine (NAM) Digital Learning Collaborative meeting about Patient Ownership of Data. Participants included stakeholders from EHR vendors, government agencies, hospital and medical practices, insurance companies, patients (I was one of several), and others. See a summary here. The meeting sought to explore several questions (paraphrased by me): Read More

Give Me My DaM Data::Open Source

By | Advocate, Clinician, ePatient, Informaticist | One Comment

I’m sensing a harmonic convergence for data control by patients and their trusted licensed clinicians through Open Source. Could a Give Me My DaM Data revolution be upon us?

Give Me My DaM Data (Data About Me) has been a rallying cry of the ePatient Movement (ePatient = Empowered, Engaged, Equipped, Enabled) for quite a while. At the same time, physicians and other licensed clinicians express increased frustration – no, outrage – that the electronic health records support billing, not clinical care. See the National Academy of Medicine’s Care-Centered Clinical Documentation in the Digital Environment: Solutions to Alleviate Burnout.

For me, Give Me my DaM Data means

  1. Data that matters to me
  2. Data that I can understand
  3. Data that’s correct
  4. Data that I control
  5. Data I can use to make decisions with my licensed clinicians

In short: Everyone with permission from me sees the same correct, up-to-date data set.

Today, let’s consider #4 Data that I control

  • I can access it easily
  • I can track who or what is trying to see it, actually sees it, adds to it, changes it (history of use)
  • I can give and withdraw permission to whom I want
  • If there’s money to be made from it, I get some of it

Right now, data about me is controlled by EHR and health app vendors, hospitals, insurance companies, government, and companies with a business model that sells data about me – not me. Read More

Eureka! Triggers and Signals

By | Advocate, Caregiver, Clinician, ePatient | 5 Comments

When Liz found herself unwilling to floss, she knew that major depression was soon to follow. She’s going to need help.  She tells someone who knows how to help her before she loses the will to take any action. When I start to get dizzy, I know my MS symptoms will soon get worse.  Drinking water almost always helps. Water! Sometimes I feel like I’m going to cry. No real reason. Normal life. It’s a signal that I’m overtired. Nap or meditation is next.  It always works. If John feels stressed and bloated, a flare-up of his Crohn’s is soon to follow. He avoids certain food, takes acetaminophen, and stays near a bathroom. When Tiffany gets a rash she needs to see her doctor within a couple of days. If she has joint pain as well, it can’t wait a couple of days.  Tiffany has lupus.

Liz, John, Tiffany, and I recognize signals that trouble is coming and action is needed. We learned the signals because we are wired to take the step back and watch ourselves from a distance. We are mindful and curious about patterns. It takes time until the Eureka/recognition minute hits. None of our doctors ever asked us if we knew our signals or asked us about our patterns.  We are all four fortunate to have a friend or care partner who listens to our ramblings.  It’s during these ramblings, complaining, wondering, pattern-seeking, and problem-solving that we learned first one signal, then more. Two of us have clinicians that helped us figure out what to do once we told them about our signals. The other two tried stuff they learned from our advocacy associations and social media networks. We are so relieved to be building this tool chest of actions to take when we recognize signals. We are eager to discover more patterns and signals. It’s like turning over a rock and finding a twinkling gem.

Once we recognize a pattern, a signal, and an action that works, we can start to look for triggers. Triggers are stressors we know will be likely to cause a signal. Managing triggers is prevention. Liz, John, Tiffany, and I have a common set of triggers: emotional stress, inactivity, smoke inhalation, insufficient rest. We also have unique triggers.  They are many and varied.

Traditional doctor visits seldom contain routine time to learn about and discover signals, triggers, responses, and prevention. The electronic medical records seldom keep track of this learning, action, and response. It makes sense (silly, but makes sense). It’s time-consuming and it’s not in the many medical professionals’ training and workflow.  It’s up to us and our personal health team. I find that people who blog about their illness and their life challenges caused or made worse by their illness, almost always write about signals, triggers, and actions. You can find many on The Chronic Illness Bloggers here on Facebook. Liz, John, Tiffany, and I also keep track as we learn about what worked – Spreadsheets, journals, or blogging.

Not everyone has a pattern-seeking brain. Even if they do have a pattern-seeking brain, they may feel so bad that there’s little space to use it.  So it’s up to our care partner, our friends, our social network, to help us.  It’s liberating. It’s diagnosis agnostic (true for any chronic illness). It’s so totally worth the effort. What have you learned?

Dandelion Trigger Photo by Dawid Zawiła on Unsplash

Pattern Photo by Amador Loureiro on Unsplash

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