Dr. Lyric Jorgenson (l) has co-authored this blog with Dr. Suzanne Bakken (c) Ms. Chrstin Veasley (r). Dr. Bakken is a Professor of Biomedical Informatics at Columbia University. Ms. Veasley is the co-founder and Director of the Chronic Pain Research Alliance. Dr. Bakken and Ms. Veasley also serve as the co-chairs of the NIH ENGAGE Working Group.
I’m sure many of you have heard the old joke “Why do we park on driveways and drive on parkways?” Sometimes the English language just doesn’t make sense. Other times, however, it feels completely intuitive. Take for instance, the word “engage.” Just speaking the word aloud feels like a call to action. Appropriately, NIH launched its new ENGAGE initiative to be just that – a call to action for people and their communities to participate in the design and conduct of clinical research.
Traditionally, those who could benefit the most from clinical research have had the least involvement. The ENGAGE initiative aims to flip this script by making public involvement in clinical research the rule and not the exception. By amplifying public voices, both healthy and sick, scientists can design more meaningful research studies and all Americans can benefit from the investment.
The team tasked with making this vision a reality consists of a diverse set of motivated experts with many practical hands-on experiences, including patients, advocates, researchers, clinicians, non-profit organizations, and of course, members of the public. They’ll be working to develop a bold strategy for maximizing public involvement throughout the clinical research continuum for NIH’s consideration.
We cannot stress enough the prominent role that public outreach and community dialogue will play in the ultimate success of ENGAGE. At this point, you might be asking yourself how we are planning to take on such an enormous task. First, we are shouting from the rafters that ENGAGE is open for business and we want to hear from you. To help promote awareness, NIH has launched an ENGAGE website which contains case studies on NIH’s approach to engagement, information on team members, details on planned events, and much more.
The second part requires you – “engagement” is a two-way street! We need everyone to help us spread the word about ENGAGE. To get us started, NIH has released a request for community information to share the team’s vision and help us get a sense of your thoughts on these issues. Tell your co-workers, your neighbors, your friends, and anyone else who will listen that NIH wants to hear from you!
An essential pillar of our work will be to interact with people in ways, and in places, where they feel comfortable. This means that it is vital for the team to visit communities across the country to hear your stories and needs first-hand. The success of ENGAGE will be built on a robust program of public involvement in people’s own communities. We anticipate these listening sessions to kick-off in late 2024 and details will be provided on the ENGAGE website as soon as they are available.
We expect a lot of progress over the course of the next year so stay tuned. Also, to learn more, please tune into the upcoming Novel and Exceptional Technology and Research Advisory Committee (NExTRAC) on June 17th as we will be discussing more on our planned efforts, including an upcoming webinar on July 17th.
This is just the start of a very exciting activity. The ENGAGE initiative holds tremendous potential, but we need your help. By creating a respectful space where all perspectives are welcome, we can work together to ensure that ENGAGE = better health for everyone.
Please let me know how I can help! Tom Norris (Joseph T. Norris, Jr., Lt. Col., USAF {Retired}) 323-775-2311, [email protected]
As smart as we humans can be we can also be incredibly ignorant. I think most people don’t become interested or motivated in threats to their well being until tragedy strikes them or their loved ones. And so it is with chronic pain and me personally. Since I began my struggle with chronic pain and the inevitable entry into the leviathan of medicine in search of an answer I have become aware of the tremendous number of people similarly situated and perhaps most importantly am aware of how little resources have been allocated to finding a solution to the inhumane suffering that is occurring in one of the richest countries in the world. When I search for a reason why there is so little attention and resources relative to the enormity of people on the verge of suicide or simply enduring unbelievable suffering and lost quality of life I am both surprised and not surprised. As I see it one of the biggest obstacles to getting more research, resources and solutions to chronic pain come from the segmented approach to pain. Our medical system has largely evolved into specialties and therefor pain is seen as cancer pain, pain from an injury, arthritic pain, diabetic pain, fibromyalgia or other individualized causes of pain and though this approach is necessary ii also serves to undermine seeing pain as pain and researching and treating it as a separate field. Though there have been improvements in this area it still occurs to me that the sheer number of people that suffer from chronic pain regardless of the category they might be included in represent a potential huge coalition which could move mountains to find the underpinnings of all pain. I will end by mentioning a movement that reminds me of the potential power to influence policy. MADD began at a time when too many people were killed by drunk drivers leaving their families suffering . As the movement garnered grass root support our government took action and addressed the issue aggressively enough that the problem as shrunk drastically. I can’t help but wonder why the numbers of families suffering from chronic pain can’t coalesce and bring about a similar change. Perhaps it’s because there is no visible enemy but rather an unseen enemy. No matter the reason the possibility exists to make a united chorus from all the individual voices loud enough to be heard by enough to develop a sea change in the arena of chronic pain.
I need stronger pain medicine than 10-325 Vicodine. I have a spinal stimulator and have tried everything I can find the past 10 yrs. My Orthopedists have done all they can. I’m nearly bedridden, no support and I’m looking into Euthanasia because I can not go on much longer. All the Drs I had that have helped me the past decade, have stopped practicing since the changes from the CDC have implemented.
I have no quality of life and this search is my last hope. “THE OTHER OPIOID CRISIS”!!!!
Hello Kim, I am sorry I didn’t see your post sooner! I have spent the last 35 years working with pain clinics trying to manage intractable and severe neurological pain. The medication that has help me the most is extended-release morphine tablets. Doctors are usually comfortable prescribing up to 90mg in a gradual increase. If you are getting less pain support than this you have something to really complain about!!! Many times, I have also felt as you do now and yet I have been somehow able to keep putting one foot in front of the other. When I am most discouraged, I firmly tell myself that I can always do something tomorrow or next week-that it won’t hurt to wait a bit longer. So often that is when I seem to find still another therapy or medication or a new doctor to see. And, gradually over many years I have found things that have helped me. Now, just when life seemed most hopeless, I decided to make a terribly difficult trip to the Cleveland Clinic in Ohio in a desperate attempt to find a diagnosis that would explain the source my pain and give me a better chance to find meaningful treatment. After a lifetime of searching and now at age 75 I have finally received an accurate diagnosis as well as a treatment protocol that has a real chance of improving my quality of life. For the first time in decades I can look forward to some reduction of pain and increased mobility. I know how hard the “opioid crisis” has been on all chronic pain patients but I encourage you not to give up the fight just yet. Many pain doctors have left the field but some of the ones who have remained are sympathetic to the pain patient’s plight and are trying to help as much as they can within the wrongheaded DEA enforcement of misinterpreted CDC guidelines. I would like to encourage you to keep searching for a pain specialist who is willing to prescribe as much as possible of what you need and also to research any nonpharmaceutical therapies available. It may not be enough, (it isn’t nearly enough for me either) but by taking advantage of what I CAN get combined with an updated TENS unit, massage or chiropractic, physical therapy, light exercise, healthy diet and whatever else I can find that helps, when used all together, it does make a difference. You are not alone in this battle! Many, many chronic pain patients and doctors are working hard trying to work out a return to reasonable pain management. Be sure you have a professional pain counselor to talk with regularly and keep in touch with online or in person support groups. Living with long term severe chronic pain is the pits but perhaps if you keep searching, you too will also finally be able to find ways to improve your life. I’m pulling for you and so are many others!