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shared decision making

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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It’s not so simple – making treatment choices

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

We (patients and clinicians) need all the help we can get making informed health care decisions. We need the right information to the right person, in the right format, through the right channel, at the right time in our life flow and workflow – The five rights. Let’s take managing acute pain as an example. Clearly, we need to make some decisions together. I (the patient) am in pain for whatever reason – hurt my back, migraines, colitis, sickle cell, a million reasons. I (the clinician) need to help my patient manage that pain with the least long-term risk possible, e.g. relief with maximum function without addiction, constipation, confusion, whatever. This pain could be new – never had it before, or familiar – chronic (we have experience with what works and what doesn’t). Clinical decision support can help us to structure and inform a routine to make choices based on research and clinical and life experience. What has worked for groups of people (those with acute back pain, migraines, colitis, sickle cell) and what has worked for the individual (me or my patient)? We can welcome this decision support when symptoms first occur, when the patient and clinician first communicate, when they first meet about the symptoms, or as we try treatments until the pain goes away or is manageable – anytime from first pain to living with pain to no pain. Read More

Imagine

By | Clinician, ePatient | No Comments

Clinician

Imagine sitting down with your patient and care partner to find them prepared to choose a treatment that works for them.

Imagine that they know their life priorities and their life challenges and can and will communicate them to you.

Imagine that you have a key to the Tower of Babel and can communicate with anyone.

Imagine that you have the latest research at your fingertips so you can have informed conversations with your patient.

Imagine that they understand that recommended treatments might work. It’s an experiment based on pretty good research, your clinical experience and training, and your sensitivity to them.

Imagine that you all accept the uncertainty of evidence and of life.

Imagine that they trust you.

Imagine that you have all the time you need together with no distractions for you or them.

Imagine that your practice runs so efficiently and effectively that most of your face time with patients is spent in relationship building, exam, and problem-solving.

Imagine that by spending a few minutes together, you can to input assessment and exam and their data seamlessly into their electronic medical record (EHR).

Imagine that they can and do submit corrections to the data in their records and that those corrections can be reviewed and entered quickly.

Imagine that it’s easy to track in the EHR how well the actions taken to treat actually worked over time using your entries and their entries.

Imagine that the recommendations chosen automatically populate a personal care plan for your patient along with all the other choices you made together about treatment and self-care.

Imagine that they will follow the plan, track progress, and let you know when they don’t and why.

Imagine that the up-to-date treatment plan and tracker is shareable in real time with anyone the patient chooses using any EHR or health app.

Patient and Care Partner

Imagine that you have all the information you need to make decisions about your medical treatment including the cost of those choices.

Imagine that the information can be shared with your family, friends, and advisors so you are prepared to advocate for yourself and make decisions with your doctor.

Imagine that you can talk about your life’s goals and challenges and that your doctor can hear you.

Imagine that all health professionals realize that they are guests in your life.

Imagine that you have time to talk and share with your doctor without distractions.

Imagine that your doctor trusts you to be the expert about you.

Imagine that your doctor helps you understand research and how it applies to you.

Imagine that you have a care partner who goes to doctor visits with you, listens and advocates for you.

Imagine that your health and wellness choices and plans can be found in your EHR.

Imagine that you can correct and update your health data and track your progress in your EHR.

Imagine you have one up-to-date EHR for all settings and providers and you control who has access to it.

Imagine that you have access to medical advice and can get questions answered when you need it, in a manner that you can digest.

Imagine that if you try something and it doesn’t work, you can adjust quickly with your health team to try something else.

 

Imagine

Photo by Bonnie Kittle on Unsplash

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#WordsDoMatter for Action

By | Advocate, Caregiver, ePatient | No Comments

Language has a magical influence on the lives we lead, with an impact on our thoughts, emotions, and/or actions. The words we use are one of the most potent ingredients in the science of language. Words have the power to heal, guide and motivate. They can confuse, mislead, and even hurt us. The intent of a spoken word can often be misinterpreted leading to an unintended consequence. The majority of our words are a result of habit and convenience. If we follow the ripple effect of our words to understand the emotions and/or behaviors they might potentially trigger, would it force us to pause, think and perhaps communicate differently? See Sarah Krug’s post on the Society of Participatory Medicine blog, The Power of Words in Healthcare: A Patient-Friendly Lexicon. Top 10 List #WordsDoMatter Project.

Sarah offers 10 words she vows not to use with patients and their families in 2018!

  1. Patient Engagement
  2. Patient Journey
  3. Patient Centric
  4. Co-Create
  5. Compliance/Adherence
  6. Survivor
  7. Fight
  8. Caregiver
  9. Shared Decision-Making
  10. Negative

Language does have magical influence. I appreciate Sarah’s post. Let’s pause and break this down. Some of these ten words are names, labels, such as survivor and caregiver. While these aren’t slurs nor do they denote disrespect, they aren’t in and of themselves that descriptive without the story behind them. A person is always more than a label. Actually, I don’t like other people to label me. I’ve been labeled heterosexual, white, retired, disabled, male nurse, patient, caregiver, etc.  Some labels I own, some labels feel limiting to me.  When I’m with other people who share a label I may either feel solidarity or feel my uniqueness. Usually, I spend little time on the label. I’d rather hear stories, share experiences, what worked and what didn’t with the people with whom I’m sharing a label. When people write and use labels about me, I can’t help but think of exceptions. I am not the typical caregiver, male nurse, retired person.  I guess.

Compliance, adherence, patient-centric, and shared decision-making have a power component. Who’s up, who’s down? As a patient activist, I would rather use Informed Decision-making or Health Care Choices than Shared Decision-making. But depending on the setting and my goals in the interaction,  I may point out the implications of the word choices or I may not. In any communication, I can choose to focus on the words used and do some education. I could listen and try to understand what the person means by the words being used. If I feel the words are offensive, I could speak up, be silent, or leave the room. Up to me.

Words have history. Patient engagement was once a revolutionary new concept. Now it’s lost its meaning or it could mean so many different things. I’d rather engage in my care, negotiate engagement, or find a common meaning with the people I’m in the room with. I think there could be other words used. However, those new words will inevitably become diluted as well.  I use journey a lot. I get so frustrated with the episodic view of health care: the visit, the hospital stay, the diagnosis. I prefer the journey, the adventure, the extended time, people, settings and the idea of a destination or goal. But I don’t care what words other people use, as long as it’s not based on diagnosis and episode.  I’ll keep using journey.

Words are important.  Especially if they’re offensive or as dilute as water. But they are also opportunities for sharing, learning, advocacy. I feel very strongly that refining words used is only step one in activism. More important to me is best health and quality of life; equity; personal, spiritual, food, and financial safety; respect; and community. And what do these words even mean? We listen, talk, and do. Hopefully, communication leads to action – action that we desire. The patient-friendly lexicon will always be dynamic.  Participatory Medicine is part of today’s lexicon.  I’d welcome the day when it gets added to the list as outdated and dilute.

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CEO of My Health Team

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

I am the CEO (Chief Executive Officer, the boss) of my health team with a ton of subcontractors: my primary care doc and her practice, my neurologist and his practice, the radiology department at my local hospital, the neighborhood pharmacy, the utility companies… You get the idea. They get paid through my employment benefits, your and my taxes, and out of my pocket. Right now I directly employ my massage therapist and acupuncturist – fee-for-service. I also have pro bono team members: my wife (my care partner), my family, friends, and advisors.

As CEO of my health team, I try to lead and manage. Leading is building and fostering relationships, finding service providers as needed, setting health goals, coming up with a plan to meet my goals, and learning from our mistakes (what doesn’t work).  As a leader I find ways to share information among the team, and, of course, I fundraise and cheerlead. Leading is also about succession planning.  Who will lead when I can’t? Managing, on the other hand, is negotiating service agreements (contracts), actually seeing that the tasks in the plan happen as desired, maintaining the team and it’s connections, and trying to fix what isn’t working. It’s a tough system to lead and manage. It’s exhausting. I have some of the skills I need, but nowhere near all. There’s very little training for Health Team CEOs- no certificate or degree. The pay stinks. There’s no vacation. I can’t resign. 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

Transformational Leaders

Dragging or Walking?

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

In its simplest form communication is who, what and how.  Who needs to communicate? What do they need to communicate? How will they communicate? Our healthcare depends on communication between all members of the health team. That communication exists in relationships.  What do people at the center of care and professionals in healthcare look for in their relationships? Much as with any relationship – access when needed, exchange of information, listening, respect, speaking the same language, understanding each other’s values and priorities, follow through. Not easy in the best of circumstances. I’m amazed that we expect consistently good communication in healthcare. How can there be? Communication in health care is fascinating! Anyway….

I am a member of the Academy of Communication in Healthcare. I went to Baltimore this week to attend the International Conference on Communication in Healthcare and the Health Literacy Annual Research Conference. My attendance was sponsored by the Patient-Centered Outcomes Research Institute (PCORI) as part of their Ambassador program.

My goodness, an International Conference on Communication in Healthcare!! Still my beating heart.

As in most healthcare conferences these days the buzzword is Patient-centered. Buzzwords are weird. They make me suspicious. Patient-centered often feels to me like health professionals dragging the patient into the center with them (as in making sure we understand them and do what they want). Sometimes, however, patient-centered appears to mean empathy (walking in someone else’s shoes). So what is it? Dragging or walking? Read More

Help Making Choices

By | Caregiver, Clinician, ePatient | No Comments

Let’s continue the conversation about making choices along our health journey. I call this choice-making informed decision-making. Some call it shared decision-making, others call it clinical decision-making. Common to all three labels is that decisions are made based upon evidence (research) when evidence is available. Remember that evidence says that under specific circumstances for certain groups of people (populations or communities) choice A is more likely than choice B to lead to a desired goal or outcome. For me (an individual) sometimes it doesn’t. And, in spite of $billions spent on research, most health decisions lack a supporting body of evidence – just too many decisions out there. As a patient and caregiver, I know that most of my health-related decisions aren’t clinical. They involve my behavior and my team’s behavior, the environment, my genetics, my social circumstances, the community I live in, and, of course, luck. Read More

Health Goals to Clinical Decisions (CDS)

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

It’s hard to reach personal health goals or solve medical problems without a plan.  Plans require decisions. Never-ending decisions (choices) in the health journey. Clinicians, researchers, and insurance companies study and use Clinical Decision Support (CDS) to help with the decision-making process. It’s a shortcut for using research (evidence) in the decision-making. Some talk about patient-centered decision support (see a definition at the bottom of this post). They’re trying to figure out how to help people to make decisions in two minutes of ten-minute visits. Yet, few patients or caregivers I’ve met ever talk about CDS.  So how can people understand the value and limitations of CDS? 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