3 posts tagged “Telehealth”

Dr. Rick Bedlack weighs in on telemedicine

Posted 2 months ago by

Do you have difficulty getting to your doctor’s appointments? Ever thought about using telemedicine? Connecting online can make it easier to get the care you need. Here, Dr. Rick Bedlack (a tenured associate professor of Medicine/Neurology at Duke University and the director of the Duke ALS Clinic that’s partnering with PatientsLikeMe in the current Lunasin study) explains the basics of telemedicine, his “Tele-ALS” program and how telemedicine could improve patient clinical trial experiences in the future.

Telemedicine 101: How does it work?

“Telemedicine” connects patients and their doctors through secure video conferencing programs (similar to “FaceTime”). Both parties need to have a computer, tablet or smartphone, and a video conferencing program that has been approved for use by the doctor’s institution. I have been offering this type of care to patients with ALS for several years now, through separate “Tele-ALS” programs at the Durham VA Medical Center (VAMC) and Duke University.

The pros of telemedicine

  • No travel: The main benefit of Tele-ALS is that it allows patients with ALS who live in rural areas to continue to connect with their ALS specialist throughout their disease, even when travel becomes difficult or impossible.
  • Symptoms management: This connection facilitates expert identification and management of the many modifiable symptoms patients with ALS experience throughout their illness, such as drooling, thick secretions, excessive laughing and crying, cramps, spasticity, pain, insomnia, anxiety, depression, and constipation.
  • Tech troubleshooting: It also facilitates identification and triage of equipment problems such as malfunctions in speech generating devices or power wheelchairs.
  • Keeping patients in the know: I have personally found it to be very useful in keeping patients informed about exciting research and alternative options and in this manner helping them stay hopeful throughout their illness.
  • More accessible clinical trials: In the next year, I will pilot the first ever totally virtual ALS clinical trial. Instead of making “in person” study visits, this trial will conduct all required visits via Tele-ALS. This should make participation much simpler and more attractive for patients and families.

The cons

There are some down sides to Tele-ALS…

  • From a patient’s perspective, many have told me they miss coming in and meeting in person with all the members of my team. Not all patients have a computer, tablet or smartphone, or Internet access.
  • From my perspective, I miss not being able to perform a detailed neurological exam. Given this limitation, I would not offer Tele-ALS to a patient I had never seen before —only to those whom I have already examined and confirmed the diagnosis in person.
  • From an administrator’s perspective, there currently is no way to bill for a typical Tele-ALS visit. This is the main reason that more clinics are not offering it. We are only able to offer it at Duke because of a generous grant from the North Carolina Chapter of ALSA.
  • Finally, there is a silly rule that prevents us from crossing state lines with this care model. The VAMC has found a way around this rule and VA providers can now offer telemedicine, including Tele-ALS, “anywhere to anywhere.” Hopefully non-VA hospitals will figure out how to do this soon.
telemedicine

telemedicine

Going forward

As we work out some of the problems with billing and crossing state lines, I think telemedicine and especially Tele-ALS clinics are going to become much more common. If my upcoming virtual research study shows good compliance and adherence, Tele-ALS will be increasingly used in trials to minimize participant burdens as well.

For more information:

www.telehealth.va.gov

www.dukealsclinic.com/telemedicine

Have you tried telemedicine? Why or why not? Join PatientsLikeMe and share your experience with the community.

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Health news: What’s making headlines in June

Posted 3 months ago by

In case you missed it, check out this round up of some of the stories making headlines in June…

 

Parkinson’s disease:
  • Apple Watch will now be able to monitor PD: Tech developers announced this month that the Apple Watch will now be able to track two common PD symptoms — tremors and dyskinesia — and map them out in graphs to help doctors (and patients) with PD monitoring. Fill me in.
  • Study points to an “overlooked driver” of PD — Bacteriophages: What are bacteriophages or “phages”? Viruses that infect bacteria. New research shows that people with PD may have an overabundance of phages that kill “good” bacteria in the microbiome or gut, which could mean a new target for treating PD. More on the study.
Lupus:
  • How common are cognitive issues with lupus? Very. A doctor specializing in lupus research says nearly 40% of people with SLE have some level of cognitive impairment, such as trouble with attention, recall and concentration — so doctors should monitor it early and often. Read his Q&A.
Lung cancer:
  • Drug may replace chemo as initial treatment for many with NSCLC: New clinical trial results of the immunotherapy drug Keytruda show that it can be a more effective first treatment than chemotherapy for many patients with advanced non-small cell lung cancer (NSCLC) — even those with low levels of the PD-L1 gene mutation. Tell me more.

 

MS:
  • VETS Act expands access to telehealth: Late last month, Congress passed the VETS Act, expanding access to telehealth for more than 20 million veterans, including 30,000 living with MS. Get the full story.
  • Now enrolling: Nationwide clinical trial: Researchers at John’s Hopkins University are seeking newly diagnosed or untreated patients living with relapsing-remitting MS (RRMS) to participate in a study to help inform treatment decisions. Learn more.

 

 

Mental Health:
  • Practices for overcoming trauma: Results from a new study found that women who combined meditation with aerobic exercise had far fewer trauma-related thoughts, and saw an uptick in feelings of self worth. Get the full story
  • When antidepressants won’t work: “I knew it wasn’t going to be a magical Cinderella transformation, but I definitely feel like a newer person.” Read one man’s experience with Transcranial Magnetic Stimulation (TMS) after first-line treatments didn’t work. More info.

 

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