Patient expertise: sharing and informing choices to connect research and clinical experience.
About this Blog
Patient expertise provides a platform for the PCCDS Learning Network to promote the conversation between patients, care partners, clinicians, IT experts, and researchers to move toward an ideal state in CDS. We realize that deep rooted obstacles stand in the way of visioning, let alone reaching an ideal state. We also know that success depends on appreciating the business and workflow of medical practices, the challenges and flow of people's lives, and the technology connections.
With your help and participation, we can select, prioritize, and take meaningful steps in a positive direction. Let's take a step - let's talk. Join us.
About this Blogger
Danny, an action catalyst empowering people traveling together toward best health, wears many hats in healthcare: patient with Multiple Sclerosis, care partner for several family members’ end-of-life journeys, a nurse for 40 years, an informaticist and a QI leader. As a patient and caregiver activist, Danny focuses on learning what works for people: informed decision-making, patient-centered research, communication at transitions of care & technology supporting solutions created by and for people. Danny serves on the Steering Committee of AHRQ’s Patient-Centered Clinical Decision Support (PCCDS) Learning Network and as patient expert for CDS Connect. He reviews PCORI research funding applications and serves as co-chair of PCORI’s Clinical Effectiveness and Decision Science (CEDS) Advisory Panel. Danny is active in the Society for Participatory Medicine and is editor of their newsletter. He is a technical expert for the CMS-funded Supporting Efficiency and Innovation in the Process of Developing CMS Quality Measures. Danny blogs weekly (www.health-hats.com) and was recently published in BMJ and JoPM.
Inching Toward the Ideal
Imagining is necessary but not sufficient. Depending on where you sit, the ideal state can seem miles away or insurmountable. I want to get closer to that ideal state without burning myself out. You’re reading this because you care about Informed Decision-Making, Clinical Decision-Making, or Making Health Choices. You are at least ankle deep if not eyeball deep Clinical Decision Support (CDS). So, let’s talk.
The Patient-Centered Clinical Decision Support (PCCDS) Learning Network seeks to promote the conversation between patients, care partners, clinicians, IT experts, and researchers to move toward an ideal state in CDS. We realize that deep-rooted obstacles stand in the way of visioning, let alone reaching an ideal state. We also know that success depends on appreciating the business and workflow of medical practices, the challenges and flow of people's lives, and the technology connections. Complicating things further, clinicians and patients and their care partners are diverse characters across the widest possible continuum. Patients’ comfort with their medical surroundings has some but limited relationship to their understanding of medical language and their bodies. Family personalities, dynamics and social circumstances have bewildering variation. Clinicians can range from those who feel, the relationship with my patients is most important to me, to those who feel, just get me through the day, I'm so tired. Likewise, patients and their care partners could range from, I'm driving my own train, to Just tell me.
With your help and participation, we can select, prioritize, and take meaningful steps in a positive direction. Let's take a step – let’s talk. Do our imaginings ring true? What's missing? Imagine we can move the dial. What would you do next?
Please use the 'Add a Comment' box below to join the conversation!
Imagine that your patients 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 your patients and caregivers 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 your patients trust you.
Imagine that you and your patients 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 your EHR is a partner, not a hand slapper, chiming in with useful information when you need it (and not when you don’t)
Imagine that patients 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, 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 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.
Great description of the way things "should" be. Looking forward to your posts!
You're a great partner
Great kick-off to this conversation Danny! Your vision of the future is compelling and urgently needed. Look forward to your leadership in cultivating dialog and action via this blog to help bring it about much sooner than would otherwise be the case.
It's a grand experiment
Great post and I couldn't agree more -- we are inching forward perceptibly and perhaps we can take a few big strides forward soon. I am encouraged: Open Notes, Apple iPhone EHR app, gradually opening of the EHR platforms, and increasingly shareable knowledge to support informed shared decision-making. Things are different from when I started as a clinician 30+ years ago, and it's more important to me than ever (especially as I occasionally now I'm the patient). Thanks for all you do to make healthcare better.
Means a lot to me
Hey Danny, great blog post. I'm a nurse too! This weekend I presented my research regarding the use of classical ethical principles to guide mobile health design at a Sigma Theta Tau conference. As a fellow nursing informaticist, I'd be very interested to discuss ethics and technology in the design phase. If you're interested, the article prompting my presentation can be found here:
Thanks for sharing your article. Yes, clinical decision support and ethics. Several items stand out to me:
- comfort with uncertainty - the variation in patient and clinician comfort with uncertainty is sobering. Reseach findings by their nature are uncertain. Research is the study of what is likely to work for groups of people. I am not a group of people. How can we increase comfort with communicating uncertainty? (beneficence?)
- health data accuracy - Patients will tell you that health data, especially across multiple facilities, clinicians, EHRs, and apps are often not accurate nor up-to-date. There are few infrastructure mechanisms to correct data. ((nonmaleficence)
- authorization to share data - Healthcare systems, EHR/app vendors, and social media feel they own patient data. Their business model uses and sells that data without patient consent, notification, or compensation. (autonomy)
- health literacy - focus on health literacy rather than life literacy emphasizes patients to understand the medical world, rather than the medical world understanding the people's physical environment and social circumstances.(justice, autonomy)
Ethics aligns with trust. More to come in the blog about trust
Unauthorized data sharing and data breach are the most often cited areas of concern, and particularly timely. I agree, informed consent must be obtain prior to sharing a patient's data - even if aggregated into de-identified form. Yet I am sure data sharing and selling is rampant in today's industry without proper consent. Perhaps now that Facebook and other social media platforms are on the hot seat, this issue will come to appropriate attention in the medical world.