This week brings some excellent reading about why and how to educate patients so they can help make better decisions about their own care.

What happens when patients get to read their own medical records? The Oct. 2^nd  Annals of Internal Medicine published two editorials and results of a quasi-experimental trial of 100 primary care doctors who voluntarily provided 13,500 patient volunteers with access to their doctors’ notes for a year. To read details, read further, but some results in brief :

• patients loved being able to read their visit report, and 75% said they were more likely to take medicines as directed;
• doctors didn’t see increased patient anxiety, visits, or time demands.

Meanwhile, an expert panel of “thought leaders” gathered by the Institute of Medicine released an in-depth report about helping patients make better care decisions by giving them the best available medical evidence. The results, summarized in an online JAMA article  and discussed by Dr. Robert Miller for ASCO Connections, included:

• 8 in 10 patients want their provider to listen, but only 6 in 10 say it happens;
• 8 in 10 want to hear the full truth about their diagnosis;
• fewer than half of patients say their provider asks about their goals and concerns. Read the rest of this entry »

Lisa Dubow with her son Sean Twersky

It’s the beginning of autumn in the fifth year since I lost my mother, Lisa Dubow, to colorectal cancer.

Many of you know my mom as the namesake of the Lisa Fund, a grant program that she helped establish which supports late stage colorectal cancer research. Perhaps you’ve donated to the Lisa Fund in the past. If so, thank you.

I am writing today to humbly ask for your continued support.

Speaking candidly, her death still does not seem real to me. I still feel her presence every day. Each time I go for a jog I remember her taking me to the gym on Sunday mornings, and my eagerly awaiting being old enough to join her on the workout floor. Each time I walk by a toy store I remember how she would take me to the Disney Store for my gift-of-the month when I behaved for the entire month, though I’m pretty sure she still took me even when I didn’t. Each time I see a silly eighties movie on TV, I remember how she insisted that I spend part of my free time renting and watching “classics” like Pretty in Pink, Sixteen Candles, and Dirty Dancing. But most important are those occasions when I’m told that people can still see her in me. There is no greater compliment.

Read the rest of this entry »

Saturday, October 6^th is a day for people who live with ostomies to educate others and celebrate life with peers around the nation and world.

On Saturday, join a Virtual Picnic hosted by the United Ostomy Associations of America, Inc., the national organization of ostomy support groups, at its Facebook Page . 

Local ostomy support groups will be hosting open houses, picnics, educational meetings: The UOAA has published a partial list of events and advocacy actions occurring around the nation here.   

At its annual Clinical Congress this week, the American College of Surgeons announced a new Ostomy Home Skills Kit for patients, including a sample to practice with, and for providers, a Skills Education Program providing evidence-based knowledge, checklists and skills training so patients can be prepared before surgery.

Read “Living Life to the Max With an Ostomy” with a sidebar by Kate Murphy—an ostomate who swam daily–in Fight Colorectal Cancer’s Spring 2012 Newsletter . 

And you might want check in with nationally known speaker, book author, comedienne, rectal cancer survivor Brenda Elsagher, at her website .  

About 100,000 ostomies—including both temporary or permanent—are created every year for people having several types of cancer and bowel diseases. As Kate Murphy wrote about having an ostomy, “When necessary, it can be both life-saving and livable.”   

Sources:  United Ostomy Associations of America, Inc.;  and Oct. 4 2012 Daily Edition News, Clinical Congress Annual Meeting of the American College of Surgeons.

 … Cancer has enriched my life. I look forward to each day with its special joys and new possibilities. I have learned to live completely and fully. And I hate to leave this life behind now that I’ve found it.   – Kate Murphy, 1997.    

 (The full message and a poem written by Kate follow at the end of this post.)

The light dimmed a little today in the world of cancer research and patient advocacy. With deep grief but also gratitude for her life’s work, we report the passing of Kate Murphy, age 70, today (Oct. 3). While living 29 years with multiple Lynch-associated cancers and multiple sclerosis, she became one of the most respected patient advocates in the nation.

Kate was rare: She could knowledgably discuss cell-level biochemical pathways with world-renowned scientists; spin out concise, accurate reports all day long at a national oncology conference; and then, late at night in her hotel room, log onto an online cancer group and reassure a frightened, newly diagnosed patient with a blazingly clear summary of what steps should come next.  Read the rest of this entry »

The numbers are stark and will touch every single American.

A picture of cancer in the greying American population was drawn in a recent study in the Journal of Geriatric Oncology examining trends in the National Cancer Institute’s population-based SEER data:

The number of “oldest of the old” Americans (age 85 or older) will double between 2000 and 2030; and will have tripled by 2040 (from 4.3 million to 15.4 million).

• Cancer in the oldest old is the 2^nd leading cause of death: More than 1 in 5 over age 85 will develop cancer.
• The total cost of cancer care will rise 39% in just 10 years, between 2010 and 2020—much of that cost in care for elderly.
• Among those age 85 or above, colorectal cancer (CRC) is the most common cancer.

That’s some of the bad news. But the recent story of colorectal cancer, ironically, also brings a ray of hope. Read the rest of this entry »