Helpful Tips to be Your Own Best Medical Researcher
AnCan asked Mike Wyn, a valued AnCan Frequent Flyer and intrepid researcher, to provide a little navigation to those who are new to research… as well as useful tips for some old hands like myself. I’ve already gathered some research nuggets from Mike’s wisdom… thank you, Mr. W.
Here are a few tips ensure the medical information you are researching is reliable and accurate
Book Research
Check the publication date: authors may need at least a year to write a book, and the average time between a book’s acceptance and its publication is typically between 9 to 12 months. Hence, the data may already be outdated when it hits the shelves
Professional Presentations
Check the credentials, disclaimers, and disclosures of the presenters. Who is the author? What is the sponsoring organization providing the information? Preferred sources are from reputable institutions, such as universities, hospitals, or government health agencies.
Google Web Searches
Use command “site:” to limit you search to top-level domains like .gov, ,org and ,edu. For example, type: latest NCCN guidelines for prostate active surveillance site: .gov OR site: .org OR site: .edu
Be cautious with .com sites unless they are from recognized and credible entities. Medical databases such as PubMed, Cochrane Library, and Google Scholar are good sources for cross-referencing scientific research.
Articles, Online Posts
Check articles, online posts, videos etc. for their sources, including scientific studies, medical journals, or clinical trials. Information from peer-reviewed journals is typically more reliable than content from non-peer-reviewed sources. Poor reviewed means that other people similarly qualified to the author have reviewed teh article adn provided comments.
Anecdotal Evidence
Anecdotal evidence is information that has been observed by the person reporting but not verified. Be skeptical of anecdotal evidence such as personal stories. It is not scientifically reliable. Focus on information supported by scientific evidence and clinical studies. The quality levels of evidence from highest to lowest for medical data are:
Systematic reviews: collect and evaluate all available data/evidence within the researchers’ criteria. An example is the “Cochrane Database of Systematic Reviews”. Meta studies are a systematic review.
Randomized controlled trials: participants are randomly assigned to experimental and control arms. The double-blind trial is the gold-standard of medical research where neither the participants nor the researchers know the placebo or medication/treatment is given. This is to prevent bias and to ensure the validity and reliability of the study.
Cohort observational study: participants with common traits or exposure to the proposed medications or treatments are followed over a long period of time.
Case study or report: a detailed report of result after treatment of an individual. This is formalized and reviewed anecdotal evidence.
Medical Trial Reports
The phases of medical trial studies cited by published medical papers are:
Pre-clinical studies: laboratory experiments using cell cultures, animal or computer models. In vitro means tested In Vitro – literally ‘in glass’ means testing outside a living organism, in a test tube or petri dish, In Vivo – literally in life -means testing in a living organism, often mice. Then studies move on to humans…
Phase I trials: assess safety, dosage and side effects of the proposed medications or treatment.
Phase II trials: expand P 1 to evaluate efficacy of the proposed medications or treatment – how well it works..
Phase III trials: confirm efficacy, safety, dosage and to evaluate side effects of the proposed medications or treatment in much larger samples. This is often where randomized blind and double blind design is used. Blind means the patient does not know what they are getting; double blind means neither the patient nor the clinician know what is being dosed.
Phase IV trials: monitor long term effectiveness and safety of the medication or treatment.
Statistical Terms
Some terms regarding statistical data cited in medical journals are explained as follows:
N = the number of participants: be wary of studies with a very low N.
HR = hazard ratio: HR=1 – there is no change in the proposed medication/treatment compared to control baseline. HR<1 – there is a reduction of risks with the proposed medication/treatment. HR>1 – there is an increase risk with the proposed medication/treatment.
CI = Confidence Interval: A trial shows that a particular drug has a 20% effect within a certain time frame with 95% CI. This shows that the study, if repeated many times, it will be 95% confident that the 20% reduction will be consistently observed.
P-value = Probability Value: This measures how strong the evidence is that the hypothesis, or effect being tested, is correct, rather than the result being random, or incorrect (null hypothesis). We seek a P-value that is <=0.05 meaning that there is a 95% or better likelihood the result is attributable to what is being tested..
You already know that at AnCan we are all peers, did you also know how much we love sharing resources with you? Well I have a resource that I would love to share! Camp Mak-A-Dream.
The view at CMAD
I had the absolute privilege of attending last year’s YAC (Young Adult Conference) for campers aged 18-35 with my fiancé Brian, and I’ve already applied for this year’s YAC since applications opened January 3rd. I enjoyed it so much that I set a reminder on my phone so I could apply as soon as possible!
I had heard about CMAD from lots of people in the community. From an AYA social worker, friends, and it was even mentioned on our webinar with Nancy Novack from Nancy’s List – Nancy’s Top Ten An Evening with Nancy Novack. To be honest, I was concerned it was overhyped. No place could be that incredible, but it is.
Camp Mak-A-Dream is in Gold Creek, Montana which was unbelievably gorgeous. I had to pinch myself every time I went outside. The ride from the airport (Missoula/MSO) to the camp was mile after mile of scenic beauty. The air is fresh, the grass is green and lush. The airport is used to campers coming in, and even TSA is super nice!
So what was it like?
Staff were waiting at the airport to greet me with snacks and drinks. I met my fellow campers and we chatted. T Staff take care of your luggage and guide you to the bus. No worries about transportation here, they have it covered to and from airport. As soon as I exited the CMAD bus when we arrived, people where cheering for me and rushing to give high fives and pats on the back for a warm welcome. I felt like a rock star.
Brian with Larry, and me with Roger!
We had to get serious stuff out of the way before the fun could begin, as CMAD is medically supervised, I had to check in with the medical team to go over my medications, and they asked questions to make sure they can take good care of me. They also do this so you know where to get medical help if you need it, and I did, twice. Someone is always on call, and you’ll receive the same care as the oncologists office. One of the medical team members even gave me a check up when I had an issue at breakfast so I could get on with my activities for the day, instead of being at the clinic.
That was great, because as a cancer patient, I’ve been in the clinic ENOUGH! Even though I’m an adult, it gave my mom so much peace of mind to know that I was fully taken care of.
They had fun activities planned to help me get to know other campers, and then we had a full buffet style dinner. After dinner we split up to do activities of our choice, I stayed up and played card games with my fellow campers and laughed so hard I cried, and my stomach hurt. Then it was time for bed.
Every single day was full of activities, however they also schedule rest time daily. You never have to do an activity you don’t want to, and if you don’t feel well, you can always rest.
Here are some activities I did:
Photo Credit – CMAD
Archery, cake decorating, geocaching, scavenger hunt, high ropes painting, coloring, tie dying, cornhole, swimming, air rifle shooting (taught and supervised by Montana Parks and Wildlife), zip lining, outdoor camping, campfires, horseback riding, yoga, meditation, journaling, advocacy class (because you can always learn more!), and so much more, this is a short list!
They have a bunch of other stuff you can do like mini golf, outdoor sports, art, it is incredible.
Everyday I had a chance to connect with my peers regarding our cancer experiences, and at AnCan, you already know how much we support this. I laughed, I cried, and I healed. There are lots of rituals and experiences that they have, that I will not share here, because they were so meaningful to me, and the added benefit of surprise complimented that.
Because I didn’t have to worry about anything (my medications, health, food, dishes, no cell service so no calls, current events, etc) it gave me time to truly focus on myself. It was much needed time designated time for me. I conquered fears, I learned new skills, and I left a much better Alexa.
Would I recommend camp to AnCaners?
YES!
Camp is FREE!! (only have to pay for travel, travel scholarships are available)
I hope you will check out what camps they offer and apply for yourself (or you and your carepartner at their caregiver camp). I hope to see and hear about your camp experiences in the future.
Questions about camp experience I didn’t answer here? Email me at alexa (@) ancan.org.
Bang your drum… it could make you smarter and healthier!
I don’t want to work I want to bang on the drum all day I don’t want to play I just want to bang on the drum all day
–Todd Rundgren
Twice in the last several months, the topic of drumming came up in our AnCan Men Speaking Freely group and it generated some excitement both times. So this month’s invite will be on that topic.In my former practice whenever I have given a non-verbal treatment there is a big relief that no talking is involved. In bypassing the verbal and left-brain systems we gain access to a typically unused part of ourselves. I wonder if we can use this approach to cope with our serious illnesses and have a better life?
Our brains have a characteristic called plasticity, the ability to change. You may have heard of this regarding the little finger brain circuit of violinists; it grows as they become proficient. Drummers also have different brains than the rest of us. They have fewer, thicker nerve fibers between the two halves of the brain. They have more efficiently organized motor cortices. (Schlaffke, 2019). Because of this, drummers can do things that we can’t. They can coordinate the two sides of the brain better, and perform motor tasks with greater efficiency. They can play different rhythms with each hand and foot at the same time.
Schlaffke’s subjects had drummed many hours per week for decades. But Bruchhage’s (2020) subjects trained for only 8 weeks and showed several changes in the cerebellum plus changes in the cortex, showing not only cerebellar plasticity but also communication and coordination between the cerebellum and brain sensorimotor areas as well as areas for cognitive control.
Drumming is very complicated, which is why it’s unfair that the lead guitar and vocal guy gets all the girls (Greenfield, J. 2022).
For some reason, there is a close association between beat synchronization (integrating auditory perception with motor activity) and reading ability in children (Bonacina, 2021). Higher synchronization ability predicts better literacy skills. Maybe early intervention involving drumming can improve literacy in kids?
Cahart et.al (2022) showed that drumming can improve behavioral outcomes for autistic adolescents and elucidated some of the neurology involved. Does this mean it could help us?
Drums have been used for millennia for healing, inducing trance, and even psyching up soldiers.
We have learned that drumming is not just about waking up the right brain, but also about connecting the sides of the brain, and the cerebellum with the cortex. It can induce alpha brain waves. It can release endorphins. Even T-cells respond to drumming (Bittman). It induces present-moment experience, which we often work toward to deal with death anxiety. Interpersonal connections are made when people drum together. Despite the effort involved, it induces relaxation. I have come across papers describing drumming and music therapy for a wide variety of emotional problems and currently, there are 8000 music therapists in the US.
How about for us? We see above the possibility of reductions in anxiety, tension, pain, isolation, depression, and over-thinking the past and future. There are many studies of music therapy in ICUs, with patients on ventilators, easing hemodialysis pain, with positive results. Also, helpful with narcotic use, social integration, and depression. MSKCC uses music therapy.
With terminal cancer, there is data showing that music helps breathing, QOL, psychospiritual integration, reducing pain in chemotherapy, radiation, and helps pediatric breast and lung Ca patients (Ramirez 2018, Hilliard 2003, Burns 2015 Tuinmann 2017, Barrera 2002, Li 2011, Lin 2011). Atkinson (2020) found improvement with fatigue. I couldn’t find any studies focused only on Prostate Cancer.
Well, all this scholarly stuff is really unnecessary to anyone who ever banged a pot with a wooden spoon. Kids love it. Adults love situations where it’s OK to be wild and make noise, such as drumming circles and Pound classes. It’s just fun and feels good.
Dr. John Antonucci
Editor: Dr. John wrote this for our Men Speaking Freely Reminder on Dec 7, 2023. It’s such a perceptive, helpful and instructive piece, AnCan wanted to share it widely.
AnCan and The Marsh (well renown, long-established theater company with a large following in the Bay Area and venues in San Francisco and Oakland) collaborateevery 4th Wednesday of the month for Solo Arts Heal!
Brooklyn-born, Los Angeles-raised rapper/producer Brian RiGHtSiDE’ Smith was diagnosed while in college with metastatic testicular cancer – and later, a reoccurrence of cancer in the brain, which left him with paralysis on his left side – hence the “right side” moniker.
In addition to performing original music, Brian discussed overcoming various health challenges and substance abuse, and his work supporting teens and young adults with cancer by sharing healthy and creative ways to process their emotions.
Watch this inspiring performance here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
Registration is officially open!! We’re so so excited to announce our SECOND class in the Summer of Art Series!
Funding for this project was provided by the Health e Voices Impact Fund at the Community Foundation of New Jersey, which was funded by a contribution from Jansen Pharmaceuticals, Inc.
No painting experience? No worries! Your instructor, Hannah Garrison, has had over 7 years of teaching experience in the arts. This painting is one she’s especially excited about because we’ll be using both a paintbrush AND a toothbrush! It’s weird and we love it.
If you already registered on the priority waitlist for June’s class, then no need to register again! We already have you on the list for this class!
Register before July 10th to receive your free art supplies in time!
There will be plenty of time to ask questions and admire everyone else’s work! Hannah is always ready to answer questions about how you can make it your own. Think you might want more or less of a certain color in your painting? There’s always a solution!
Sessions are recorded and available on our Blog and YouTube Channel. And if you don’t want to be discovered, it’s fine to remain anonymous or even shut off your camera.
In case you didn’t make it in time for registration, Here are two things you can do:
Fill out THIS FORM to register for the waitlist for August’s class. If you couldn’t register for July’s class, you’ll get priority for this one
You can still join us for July’s class with your own supplies! Email Hannah@ancan.org for the link
You’ll need:
One soft adult toothbrush (one that you’ll never use for anything other than painting)
Size 6 or 8 round paint brush
canvas size 9in x 12in
Acrylic paint colors: white / orange / bright yellow / purple / pink / blue
water/ lots of napkins
extra papers / butcher paper / plastic bags to cover your work station. Protect your surface from paint if needed!
All paint manufacturers have different names for their own colors, so choose the colors you LOVE!
Check out our AnCan Gallery HERE to see some amazing artwork from June’s class!! You can even watch the recording for June’s “Markers and Sunflowers” class
Email Hannah@ancan.org or Alexa@ancan.org for questions 🙂 Hope to see you there!
If you’re in need of a little pick-me-up, or perhaps some much needed time making art as “therapy” with other people in our amazing AnCan community, we’ve got something for you.
AnCan’s Summer of Art
AnCan Foundation has been awarded a grant from HealtheVoices Impact Fund at the Community Foundation of New Jersey funded by Janssen Pharmaceuticals, Inc. to provide art “therapy” to brighten all our lives! We’re calling this art “therapy” series the Summer of Art!!
Award-wining arts-in-healthcare teacher, Hannah Garrison, who lives with MS herself, will AMAZE and ASTOUND you with your own abilities!! No art experience needed – just curiosity and a little creativity.
And it’s accessible to all – even those with ‘hand issues’. AnCan wants this to be disability-centric so we are sending you art supplies Our grant funds 4 classes through 2022 – first one on June, 16!
To attend fill out this form by June 9th to receive FREE art supplies, first-come, first-served …. markers, paper, and adaptive writing aides. Class size is limited!
First class – June 16th from 8-9:30pm EST / 5-6:30pm PST
A link will be provided for the class by email!
YOU’LL be drawing Van Gogh inspired sunflowers …. wondering how??
Hannah will break it down into small, manageable petal sizes that you can scribble through bit by bit until voila – SUNFLOWERS AND A VASE!!
And it’s interactive with lotsa space for queries and questions.
Sessions are recorded and available on our Blog and YouTube Channel. And if you don’t want to be discovered, it’s fine to remain anonymous or even shut off your camera.
EVERYONE please complete the form – if we run out of supplies, you’ll have priority for the next class! Your application is how we keep track.
Complete the form by June 9th to receive free supplies and the URL to attend!
With terminal cancer, there is data showing that music helps breathing, QOL, psychospiritual integration, reducing pain in chemotherapy, radiation, and helps pediatric breast and lung Ca patients (Ramirez 2018, Hilliard 2003, Burns 2015 Tuinmann 2017, Barrera 2002, Li 2011, Lin 2011). Atkinson (2020) found improvement with fatigue. I couldn’t find any studies focused only on Prostate Cancer.
Summer of Art – Dreamy Summer Sky
Hello, Friends and Family of AnCan.
Award-wining