Posted tagged ‘medicine X’

Misconceptions about opioid use: A Medicine X discussion

September 17, 2017

Photo courtesy of Stanford Medicine X

We often hear about the “opioid crisis” and its devastating effects — more than 90 Americans die every day from an opioid overdose and about 2 million suffer from substance use disorders involving prescription opioids. But, argued panelists at a Stanford Medicine X session on the topic yesterday, the issues are often oversimplified in public discussion and by the media, which stigmatizes opioid users and contributes to misconceptions.

The afternoon panel — which Larry Chu, MD, moderator and executive director of Medicine X, deliberately called “Opioids in America” instead of “The Opioid Crisis” — offered a broad range of perspectives from patients and physicians. Among the misconceptions discussed by the panel:

  • Only drug addicts use opioids: Joe Riffe, an ePatient and paramedic, explained, “If you use opioids, you’re seen as weak or a drug addict or a drug seeker. I’ll never take an opioid on duty, but I’m forced to use them because I’m in too much pain from my amputation. And it’s really looked down upon, especially in the medical community.”
  • People choose to be opioid addicts: Ashley Elliott, a recovering addict, artist and psychology major, noted, “People that are addicted to opioids don’t want to be. And if you’re a recovering addict, finding a doctor who is willing to treat you as a human as opposed to an addict is difficult.” Thomas Kline, MD, PhD, a patient and geriatric medicine specialist in Raleigh, North Carolina, agreed: “People with opioid addictions have been lepers for years and now another 9 million people have become lepers because they take pain medicine.”
  • Opioids are readily available: “Opioids are not being thrown at patients like candy, as it’s sometimes portrayed in the media,” said Heather Aspell, a patient, artist, attorney and disability advocate. “We actually have to go through so many hoops to get our medication. Beyond simply getting the prescription from a doctor, it can be challenging to even find the medication. I get refused by pharmacies regularly.”
  • Doctors are adequately treating pain: Anesthesiologist and pain medicine specialist Frank Lee, MD, told the audience, “Data shows that we’re doing a terrible job for a lot of populations, including cancer patients, surgery patients and chronic pain patients. Now is the time to re-evaluate the paradigm. We don’t need more guidelines. We need to work together, providers and patients, to re-exam this pain-treatment paradigm.”
  • We handle prescription opioids like other countries: “I think the biggest misconception is that the United States is normal in how it handles prescription opioids,” said Stanford addiction expert Keith Humphreys, PhD. He later added, “The United States’ opioid use dwarfs any other nation by a very large factor. So we over prescribe. And at the same time, there are people who absolutely need these medications and don’t get them. So we also under prescribe. As my friend Sean Mackey, MD, PhD, says, we shouldn’t be pro-opioid or negative-opioid; we should be pro-patient.”

After the panel discussion, Medicine X executive board member Nick Dawson moderated a town hall — pushing the panel and audience to think boldly about potential solutions. Among attendees’ suggestions was to change how prescriptions are written by going beyond a numeric pain scale to identify the goal for the pain medication, being more specific about what is being treated on the script and creating a certification process for patients with chronic pain that is recognized by pharmacists.

Near the end of the session, Bruce Greenstein, the United States Department of Health and Human Services’ chief technology officer, announced an opioid challenge summit and code-a-thon taking place in Washington, D.C. this December. And Chu closed things out with a hopeful note: “I started out this conference asking us to think outside the box about these tough topics, and I think we made a start on that today. … We’re reducing the stigma about opioids by talking about it and we’re raising awareness. Let’s keep talking.”

This is a reposting of my Scope blog story, courtesy of Stanford School of Medicine.

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The Opioid Crisis: Medicine X panelists explore the complexity of managing chronic pain

September 19, 2016
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Photograph courtesy of Medicine X

Saturday’s Medicine X session on the opioid crisis focused on how best to manage the chronic pain felt by millions of Americans every day. The session engaged panelists with different perspectives, including a patient in chronic pain and physicians struggling to decide when to prescribe opioids. All the panelists recognized that opioid addiction is a serious and pervasive problem, but they also warned that proper pain management is a complex issue.

Jeanmarie Perrone, MD, professor of emergency medicine at the Hospital of University of Pennsylvania, told the audience, “I need good pain management to work in the emergency room. We need these drugs, we just need to be conscientious about it.”

ePatient Britt Johnson, a Medicine X board member and owner of The Hurt Blogger, understands this all too well. She shared her story of needing opioids to function due to severe pain from spondyloarthropathy and rheumatoid arthritis, which she’s had for most of her life.

Johnson addressed the media’s oversimplification of the issue. “Pain is not politically correct,” she said. “The media tells me that all opioids are all bad. The media makes everyone believe that I, too, am struggling with addiction. And the media lumps me in with statistics on heroin usage and overdose deaths.” She went on to say that she winds up “feeling guilt and shame for constantly experiencing pain. And I’m reminded constantly how heart breaking overdose stories are, which they are. But my story is not connected to those stories.”

Pain expert Frank Lee, MD, agreed that “we’re starting to stereotype chronic opioid patients as heroin addicts and physicians as pill pushers.” Lee described the impact of this on his practice and how it increases his risk if he prescribes a large or moderate dose of opioids to a patient. “If I just follow the CDC guidelines and tell the patient that I can’t prescribe this medication, it makes my life easier,” he said.

Lee shared a story about one of his patients who recently died. In her 70s, Mary had severe rheumatoid arthritis and three back surgeries. When he “inherited” Mary from a different pain doctor, she was on massive doses of opioids — close to 300 mg morphine daily equivalents, several times the recommended dose. “Maybe I was naïve, but I went through all the dangers of opioids. I told her, ‘We need to come down on your dose.’ She was hesitant, but she said ‘if you really need to do this, okay.’ During the next three months, we went down from almost 300 mg to about 70 mg. She ended up in the emergency room twice, because she just couldn’t take it. It hurt too much,” he said. “She cared enough to try what I recommended and I felt like I owed her the chance. We went back to the insane amount of her opioids and she did well.” However, Lee expressed his concern over what the high opioid doses did to her body.

Lee and others discussed the need to distinguish between patients like Johnson and Mary from those who are prone to opioid addiction. Sean Mackey, MD, PhD, chief of the division of pain medicine at Stanford, declared the need for more quality data on pain — through programs like the National Pain Strategy — to help identify the risk factors of the people that are more vulnerable. Cynthia Reilly, director of the prescription drug abuse project at The Pew Charitable Trusts, professed that prescription drug monitoring programs are part of the solution.

The panel agreed that another solution is to make integrated medicine options more affordable. “At the pharmacy I get a bottle of 60 Percocet for ten dollars, yet I have to pay out of pocket for massage, acupuncture, heat therapy, ice packs, cognitive behavioral therapy, pain psychologists and anything else,” said Johnson. “Opioids have the cheapest barrier to access, yet raising the price of opioids is not the answer; putting complimentarily pain therapies on an even playing field is.”

Although mostly harmonious, the panel discussion became heated near the end when a member of the audience interrupted, asking to hear more from Johnson. Feeling that she was being left out of the conversation, she said, “I’m sitting here and the discussion about the pain crisis is happening around me, when I’m right here and it could be happening with me. We could be having a real discussion here.” The panel concluded that we need to do a better job bringing everyone together with different perspectives.

This is a reposting of my Scope blog story, courtesy of Stanford School of Medicine.

How can technology address the health needs of aging adults? A Medicine X panel offers tips

September 18, 2016
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Photo courtesy of Medicine X

Older adults aren’t usually the first adopters of new health technologies. But wearable devices and smart phone apps could help this growing population by improving patient-provider relationships, enhancing health literacy, increasing safety and engaging patients in their own health, a panel of speakers at Medicine X said Saturday.

Moderator Frances Patmon, PhD, RN, nurse scientist at Dignity Health, began the discussion by noting, “All our baby boomers are retiring in the next five to 10 years and it’s going to be problematic if we don’t know how to care for these older adults.” She believes that it’s vital to engage and educate older patients and their families and “technology is a great way to engage the older population.”

A major topic of the session was the need to customize technology. Perry Gee, PhD, RN, nurse scientist at Dignity Health, explained that 60 percent of older adults have some kind of functional deficiency, such as impaired vision, hearing, sense of touch or memory function. “We need to consider this when we design,” he said.

Panelist Christopher Snider, Medicine X executive board member, social media strategist at Smart Patients and patient community advocate at Symplur, agreed. Both Snider and his wife live with diabetes. “I’m looking forward to getting old with diabetes with my wife who has diabetes. And our eyes and touch aren’t going to be as reliable,” he said. “Am I going to be able to hear or feel my CGM [continuous glucose monitor] when it alerts me in the middle of the night? Maybe we need an older adult model with improved technology alerts that cause a seismic shift in the house?”

Gee noted that patients need to be part of this design process. “We need to invite older adults, who are struggling, to participate in the design process — bringing them into our design labs.”

In addition to innovative design, the panelists agreed that more training was needed — for patients, families and health-care providers. Michelle Litchman, PhD, nurse practitioner and assistant professor at the University of Utah College of Nursing, explained, “It takes a lot more time to train older adults on technology. Because of dementia, we also need to involve family members and other caregivers. And we have to tailor the training for that person and consider patient safety safeguards.”

Litchman described how technology and training helped her patient Lavon, an 85-year-old woman with Type 1 diabetes and dementia who lives in an assisted-living facility. In the past, home health-care workers came in to give Lavon her insulin, but she still had a lot of glucose variability because she only needed tiny doses of insulin. So Litchman provided her with an insulin pump along with “a ton of training.” The process started with a two-week practice run using a pump dispensing saline, followed by training all of her home health caregivers and family. In the end, Lavon got a more precise dose of insulin and her dizzy episodes were greatly reduced.

Although technology can help older adults remain more independent, Gee noted that the digital divide still exists and is even more pronounced for older adults. “We need to work with people that are 75 years or older who haven’t used technology. We need to bring them to the table and learn from them,” he said.

This is a reposting of my Scope blog story, courtesy of Stanford School of Medicine.

On the importance of patient empowerment and open source, a Medicine X panel weighs in

September 16, 2016
Core theme: Data + Devices panel with Ben West, Cedric Hutchings, Karen Sandler and Dana Lewis

Photo courtesy of Medicine X

It’s your body, so you should have access to all of your medical data, right? This morning at the Medicine X session on data and devices, I learned that liberating your own medical data — or devices — will probably not be so simple.

The conversation was started by Ben West, a software engineer and co-founder of the Nightscout Project, which supports the creation of open-source technology for people with Type 1 diabetes. He explained that he was given two computers when he was diagnosed with Type 1 diabetes 12 years ago: an insulin pump and a device that tells him how much insulin to take.

“These devices are literally in or on our bodies, so my relationship with these devices is extremely personal and intimate. And that’s true for many other patients,” he said. “But computers are programmed by people, so sometimes the computers can do the wrong thing. When something with one of these devices goes haywire — and you get a side effect because of the therapy rather than the disease — to what degree should you be empowered?” He said he believes patients should have the ability to fix or adjust the device themselves.

This launched West on his mission to reverse engineer his medical devices and develop open-source software to take control of his personal care.

Speaker Karen Sandler, JD, heartedly agreed that developing open-source software for medical devices is critical. She is the executive director of Software Freedom Conservancy, a non-profit organization that develops, promotes and defends open-source software. Her life was changed when she was diagnosed with a life-threatening heart problem and implanted with a defibrillator. “I went from someone who thought open source was cool and useful to someone who thought great open-source software was essential for our society,” Sandler said.

As a self-proclaimed “extreme geek” with technical programming experience, when her doctor gave her the defibrillator, Sandler asked, “what software does it run?” She found out that neither her doctor nor the device’s medical representative had ever thought about the software used on the device. But Sandler said she knew that all software has bugs, needs to be reliably backed up and needs to be protected from hackers.

“It’s clear that free and open-source software is better and safer over time,” Sandler explained. “If there is a problem, you don’t have to wait for the manufacturing company to admit the problem and then make and release a fix. With free and open-source software, anyone can make the fix. And that is really, really important, especially when you’re a special case.” Sandler speaks from experience: she was incorrectly shocked twice by her defibrillator when pregnant — a rare happening still in need of a technical solution. “With free open-source software, we remove the reliance on any single company and take back control,” she said.

Speaker Cédric Hutchings, co-founder and CEO at Withings, a consumer electronics company that develops health devices and apps, emphasized the importance of patient empowerment. “Empowerment is about getting insights to drive change,” he said, “ and we need to develop insights using population data.” He explained that this requires the involvement of researchers, patients, health-care providers and the community. It’s also essential to be “transparent and set expectations” with patients about how their data will be used.

Near the end of the panel discussion, moderator Dana Lewis, director of MDigitalLife, posed the question, “What is the secret sauce for the open-source community?” Perhaps not a secret sauce exactly, but the panelists said that the ability to access their personal data can help overcome a feeling of powerlessness.

However, West cautioned, “We’re intimately connected to these devices and they are on a hostile network. So when we design this kind of medical device, we need to think about it like a diplomatic pouch – something so secure and trustworthy that all your secrets in it are safeguarded.”

This is a reposting of my Scope blog story, courtesy of Stanford School of Medicine.

C3 Prize: Your chance to improve cancer care

August 4, 2016
Image by Thomas Hawk

Image by Thomas Hawk

Robert Herjavec, a star investor on the reality TV show Shark Tank, knows what it’s like to have a family member suffer through cancer treatment. His mother died nearly ten years ago of ovarian cancer.

That experience inspired Herjavec to become an expert judge for the C3 Prize — a new business competition designed to change cancer care beyond medicine and treatment. Created in partnership with Astellas Oncology, the World Medical Innovation Forum, Stanford University Medicine X and MATTER, the C3 Prize is seeking innovative ideas to improve the lives’ of cancer patients and caregivers.

“I believe there is an immense need to improve the lives of patients, like my mother, and their caregivers, like myself,” said Heriavec in a recent Forbes piece. “For me, this is personal. The C3 Prize is one way I can use my passion for entrepreneurship to give back.”

In particular, the competition is looking for novel ways to help patients and their caregivers:

  • Navigate through the healthcare system
  • Adhere to a treatment plan
  • Coordinate how care is delivered
  • Support survivors

Everyone is encouraged to apply — patients, caregivers, healthcare professionals and concerned citizens — but you need to submit your idea by August 8. The top five finalists, as determined by an expert panel, will be invited to pitch their ideas, at no cost, in front of a live panel of judges at the Stanford Medicine X conference on September 17. Three prizes will be awarded: a $50,000 grand prize grant and two $25,000 grants, which can be used to implement the winners’ ideas.

This is a reposting of my Scope blog story, courtesy of Stanford School of Medicine.


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