Special Presentation: A Layperson’s Guide to Reading Medical Research

Special Presentation: A Layperson’s Guide to Reading Medical Research

On September 1st, we had Aurora Esquela Kerscher, PhD (Associate professor of microbiology and molecular cell biology and a prostate cancer researcher at Leroy T. Canoles Jr. Cancer Research Center) offered strategies to help laypeople understand medical research articles.

Laypeople may want to read medical journals to find out the latest research in the media, including findings that might impact their care. Dr. Kerscher said it can be hard to track down and expensive to obtain papers. She said Google Scholar at https://scholar.google.com/ and PubMed.gov can lead to pertinent papers. ResearchGate.net can help link people to authors, who might be willing to send interested parties their papers.

In this presentation, Dr. Kerscher gave an anatomy of a research paper, focusing on a new study on how exercise can help prostate as well as cardiac health in men on active surveillance.

She also provided a step-by-step guide on how to quickly read/skim a research paper.

“Ask yourself – WHAT IS THE BIG QUESTION?”

–What problem is being addressed?

–Then ask yourself – Why should I care?

Her final helpful tips were:

• Read slowly, take notes as you read,

• Question assumptions, the importance of the problem.

• Write questions to track what you don’t understand. Write down and translate jargon in Google.

• Sometimes what is not in the paper is more important than what is in it.

• Is there something the authors have overlooked?

• Don’t let ideas or design details pass until you understand them.

• Do not assume the paper is correct, even if published in a prestigious peer-reviewed venue

Watch this extremely information presentation here:

 

To view the slides from this presentation, click here.

For information on our peer-led video chat ACTIVE SURVEILLANCE PROSTATE CANCER VIRTUAL SUPPORT GROUP, click here.

To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.

Peer Advice on “Managing Your Medical Team”

Peer Advice on “Managing Your Medical Team”

Peer Advice on “Managing Your Medical Team”
We received this great email from AnCan community member Allen, with tips from a patient’s perspective on to best manage your medical team, as inspired by our webinar “Managing Your Medical Team“.
From Allen himself…
First, I live in Auburn, Alabama, which is a smaller college town with a population of about 68,000 residents, including about 30,000 students.  Until recently, we only had 1 urologist for the entire county with 175,000 residents.  I was diagnosed with PCa a year ago and started looking outside my community for more options. 
I landed at Emory University last November, but was disappointed with the level of service and attention to detail.  After they made several mistakes this spring, I fired my team at Emory in July and went with a private practice Urologist in Atlanta and Dr. John Sylvester, a prominent Radiation Oncologist in Sarasota, FL. 
I am much happier with the team I have now, but I have found it a little challenging managing a team of doctors in 3 different states and various distances from my home.  Following are some things I have learned:
1. Referrals are not as important as they used to be.  Many doctors will accept new patients without a referral.
2.  Choose the Doctor, not the Institution, to get a doctor you are comfortable with.
3.  Insurance – make sure the doctor is in your insurance network and ask your insurer if procedures are covered so you are not blindsided.
4.  Telehealth calls – ask if the Doctor can do them, especially across state lines.
5.  Keep good notes!  I found a notebook system has been a great help in organizing my notes, phone calls, and appointments.
6.  HIPAA – If you are comfortable with emailing your records and questions, that is your decision.  I would rather get my info into the right hands quickly than to worry about a lot of red tape.  Doctors may be more restricted by HIPAA rules.
7.  Patient Portals – Use them if you can.  It is an excellent and secure way to access your health records.
8.  List your questions for the Doctor prior to visits to make sure you cover your concerns.  Be concise. (and always hand the doc a copy of your questions at the start of your consult – that way everything gets answered: AnCan)
9.  Coordinate your Medical Team – Secure office and FAX numbers and other contact info and have that info available to other members of your team if needed.  This can save a lot of time and prevent delays.
10.  Insist on getting good Diagnostics Tests.  
Thanks, Allen! And as we say here at AnCan…Be your OWN best advocate!
Webinar: Managing Your Medical Team

Webinar: Managing Your Medical Team

On August 31st, we had the utmost pleasure having an all-star line up of wonderful health care members of all different specialties to come together and discuss being part of a team, including how patients and care partners can work together!

 

With the wonderful Dr. BJ Miller (Palliative Care specialist, Co-founder Mettle Health, and AnCan Advisory Board Member) who you may know from his multi-million viewed TED Talk and Netflix documentary End Gamemoderated the conversation.

 

On our panel we had Ladybird Morgan, RN, MSW (Mettle Health, executive director and co-founder Humane Prison Hospice Project), Dr. Aaron Boster (Neurologist, MS expert, The Boster Center for Multiple Sclerosis), Dr. Pamela Munster (Oncologist, UCSF Helen Diller Family Comprehensive Cancer Center), and Karen Schanche, LCSW (psychotherapist).

 

You’ll hear open and honest dialogue, and great answers to questions from our audience.

 

Watch this amazing webinar here:

 

Special thanks to Myovant Sciences – Pfizer and Foundation Medicine for sponsoring this webinar.

 

 

For information on our peer-led video chat VIRTUAL SUPPORT GROUPS, click here.

To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.

Wanna make an AnCan Rude Names Fundraiser???

Wanna make an AnCan Rude Names Fundraiser???

Wanna make an AnCan Rude Names Fundraiser???

Here’s our latest proposal for AnCan supporters to raise a few bucks on our behalf ……. follow Brit Paul Taylor’s lead and raise money for us with a US Version Rude Names fundraiser . And to heck with a moped … we have a few bigger bikes in this Group.

Watch Taylor’s UK Tour in this short BBC video https://www.bbc.com/news/uk-england-oxfordshire-58375401 and see a few of the places he visited below!

Maybe you just have to be a Brit to appreciate this toilet humor …. but if not, AnCan is all ears!

Paul Taylor with his moped next to the stone sign at Shitterton

Four place name signs with a moped parked in front

A Dozen Eggs – reblogged from ASCO’s JCO

A Dozen Eggs – reblogged from ASCO’s JCO

A very interesting but challenging and thought provoking article came to AnCan’s attention last week published by ASCO’s Journal of Clincial Oncology.  The AnCan prostate cancer moderators thought carefully about whether we should reblog it Ultimately we decided it was worthwile for all our prostate cancer community, and maybe others too.

Please let us know your thoughts via info@ancan.org – we will add them to this page. Your editor has already taken the liberty of including some moderator responses:

Just one editorial comment on A Dozen Eggs , especially with men in mind using estrogen patches. AnCan is not aware of any clinical evidence that increased levels of estrogen promote prostate cancer progression. 

https://ascopubs.org/doi/full/10.1200/JCO.21.00804

Reactions

…. it is an excellent and thought provoking article.  If presented in the right context and sensitivity it could be quite instructive and inspirational.  

It is really a great piece.

I think it’s fine, although I’m a little concerned about the oncologist telling Evelyn that estrogen might make her prostate cancer worse.  I’m not aware of evidence supporting that concern 

Quite interesting and not something I even thought about. I’d say the majority of our “customers” are squarely in the heterosexual male category but I wouldn’t doubt that many of them may know someone similar to Evelyn.  I have a work association with a transgender woman that I’ve known for 15+ years, well before the transition.  I know from past conversations that she has not had reassignment surgery.  It might be something she faces in the future.  Now you have me wondering if they take the prostate out for reassignment surgery.

I have attended workshops discussing transgender issues in the medical world. The system mistreats and misunderstands transgender patients. Medical staffs humiliate them and ask for their birth names and to show their driver’s licenses.

If these patients undergo transformative surgery, they retain their prostates. So ironically, as much as they wish to change their identities, they need to undergo digital rectal exams and PSAs as part of routine care. 
Change is coming slowly to accept these people in medicine and in the larger society.