Everyone makes decisions about managing pain sometime in their lives. Most people with chronic illness make repeated decisions about managing pain every day. Some people are fortunate to have strong relationships with trusted clinicians or care partners to share the decisions about managing pain. An alarming number of people have found themselves in a downward spiral of addiction to opioids first taken to manage their acute or chronic pain.
Greetings fellow patient/caregiver activists and advocates! I need your help to be successful in some work I’m doing to help people use information better in managing pain. This post takes two minutes to read. A couple of links might take 7 minutes to read. Thinking and responding…. If you can, please take the time. I’m part of this team and I have my own experience with pain management and decision-making. We need a wider reality check. That’s you. Thanks for all you do.
I am part of the Patient-Centered Clinical Decision Support (PCCDS) Learning Network – an AHRQ-funded, multi-stakeholder initiative that includes patients/advocates, clinicians, care organization leaders, policymakers, payers, information system vendors, researchers, and many others. PCCDS is a process for supporting individual patients, caregivers and/or care teams in health-related decisions and actions in a patient-centered fashion. This year our focus is on developing a national action plan to better support decisions, actions, and outcomes related to pain management.
Our approach is to anchor the action plan on a shared vision of what PCCDS-enabled pain management (and opioid use) should ideally look like. That vision will then help us identify steps individuals/organizations could take to realize it. As patients and advocates, we are the central actors in communicating and helping move the industry toward this ideal state. Hence this message and my ask.
Below, please find a note the PCCDS Learning Network recently sent to its 800+ members requesting input on the pain management future vision. Please look over the future state scenarios and questions below and share widely with anyone who might have valuable input. I play a key role as patient/caregiver stakeholder in this initiative, and you and those you reach out to are welcome to send any feedback directly to me, Danny van Leeuwen at firstname.lastname@example.org. Please put PCCDS-LN in the subject line when you write me. If you’d rather chat, I’d love it. We can Google Hangout or FaceTime. Give me an idea of your availability. We’ll figure it out.
This is important and nuanced stuff. Please, we need you and your voice(s) to make sure this effort fully meets its goal of helping you and those you care about manage pain better.
Sent to PCCDS Learning Network
Dear PCCDS Learning Network member,
A Learning Network (LN) focus this year is leveraging PCCDS to support care transformation by broadly enhancing pain management and appropriate opioid use. The LN’s Opioid Action Plan Working Group (OAPWG) has leaders from diverse organizations that are developing a consensus desired future state in this area and fostering stakeholder-driven actions to make that vision a widespread, valuable reality.
We are writing now to seek your input on the 4 PCCDS-enabled pain management scenarios that the OAPWG drafted. We want to ensure that they paint a compelling future vision that will motivate collaboration and action to make the PCCDS interventions on which they are based widely available and highly useful. These 15 interventions include pain/opioid-related shared decision-making tools, order sets, pain tracking tools, shared care plans and others.
To review and provide comments on the scenarios, please visit https://pccds-ln.org/node/421, and login or create a new profile to become a registered user in order to use the ‘comment’ feature at the bottom of the page. If the scenarios were broadly realized would that be valuable to you and your organization? What changes would make them more valuable? Are there actions you or your organization are taking – or could take – to make these scenarios (and underlying interventions) widely applied and valuable? Please share your thoughts about these questions and any other reactions in the comment area.
We look forward to your input and collaboration on this important work!
Again, you and those you reach out to are welcome to send any feedback directly to me, Danny van Leeuwen at email@example.com. Please put PCCDS-LN in the subject line when you write me. If you’d rather chat, I’d love it. We can Google Hangout or FaceTime. Give me an idea of your availability. We’ll figure it out.