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Cancer patients, survivors find truth in ’50/50′ | LA Times

In the new film “50/50,” there is a scene where cancer patient Adam, played by Joseph Gordon-Levitt, is on a gurney being wheeled into the operating room with his parents by his side. As the nurses take the 27-year-old away, he calls out for his mom like he’s a little boy. It’s an affecting moment, but for Matthew Zachary, it was particularly personal.

“That’s exactly what happened to me,” said the 37-year-old father of twins from New York City who was diagnosed withbrain cancer at age 21. “Literally I’m with my parents and they are wheeling me off to the operating room and I lost it. It was a horrible, horrible experience.”

For Heidi Adams, it was the scene at the dinner table between Gordon-Levitt’s character and his mother, played by Anjelica Huston, who wants to move in to help care for him.

“I remember that conversation with my mother, that struggle at that time in your life when you are discovering your independence, fighting for your independence and you are thrown back into this position where you need to rely on people, where you need your mom. It’s very disorienting,” said Adams, 44, from Austin, Texas, who lived with her parents for 2 1/2 years when she was 26 and undergoing chemotherapyand radiation for bone cancer.

Making a film about a deadly disease, then adding in strong comedic elements as “50/50″ does, would seem to be a recipe either to offend with its audacity or insult with a sappy portrayal. A few other recent films about illness, such as Judd Apatow‘s “Funny People” and the Anne Hathaway movie “Love and Other Drugs,” have tried to walk the line between dramaand comedy, but reactions were mixed. Yet the reception among those who might be most sensitive about “50/50″ — cancer patients and survivors, particularly young adults — has been surprisingly positive.

“The first thing we had to do was to make sure the cancer community was going to embrace the movie. You don’t want to put a movie out there that they are uncomfortable with,” said Nancy Kirkpatrick, president of marketing for Summit Entertainment, the studio behind the film. “We did a really broad screening program so I was expecting to get the emails saying, ‘How can you be so insensitive?’ But we didn’t get any of those.”

“50/50″ is based on the screenwriter Will Reiser’s fight against spinal cancer at age 25, and the story is resonating with those who are too old to be considered pediatric oncology patients but too young to share much in common with older adult cancer patients.

While there is a slew of resources targeted at child and older adult cancer patients, those who fall in between, like Reiser, say they’re often at a loss. The medical establishment, they say, is only beginning to recognize their specific needs. This group tends to be the most transient, and the most uninsured. They have specific psychological, physical and financial issues unique to their age.

“Will’s story is the archetype for the story of how much it [stinks] to be sick in your 20s and treated as if you’re in your 60s,” said Zachary, who founded the I’m Too Young for This! Cancer Foundation as a resource for young adults affected by cancer. ” ’50/50′ was torn from the pages of my life and I’ve heard that quote from hundreds of other young adults who have seen the film. Whether it’s the doctor who doesn’t make eye contact or the overbearing mom who wants to help, or the girlfriend who abandons you, or the manic hysteric fits of rage, all of it is so accurate.”

Reiser said he never intended to become the poster child for young people with cancer but he is very gratified that his retelling of his experience has connected with so many others in similar situations.

“We were just trying to tell a story that was personal to us and to tell a good story,” said Reiser, who produced the movie with his longtime friend Seth Rogen, who co-stars in the film and was an active part of Reiser’s support group during his treatment. “The fact that it’s starting a broader conversation, and is helping people who are going through a similar situation, that is really validating.”

Summit initially instituted a series of word-of-mouth screenings with Stand Up to Cancer and Lance Armstrong’s LiveStrong foundation more as a defensive measure than anything geared toward advocacy.

But they were pleasantly surprised when they heard from people like Adams, who started her own young-adult cancer foundation and co-wrote a guidebook for young adults with cancer before merging her efforts with LiveStrong, where she now serves as the foundation’s senior director of engagement.

“I walked out of the screening and wrote an email to Jonathan [Levine, the film's director] thanking him for finally representing my experience in a way that was real, didn’t pull any punches or dissolve into something soft and politically correct.”

Dr. Stuart Siegel, associate director for pediatric oncology at the USC Norris Comprehensive Cancer Center, has partnered with Dr. Debu Tripathy to start an adolescent/young adult program at the facility. It’s a burgeoning area of research, practice and training that he says came to the forefront in 2005 when the national tumor registry published data indicating that this group of patients was not showing much improvement in survival rates, compared with children and older adults.

Siegel, who moderated a post-screening panel with Reiser, Rogen and co-star Anna Kendrick at USC last month, said the film could serve as a useful tool.

“All of the medical students and faculty I talked to after the screening thought it was a wonderful training film, which is unusual for a Hollywood movie. But it really did hit virtually all of the key issues,” said Siegel, referring specifically to how the film addresses interpersonal relationships, sexuality, the pain associated with treatment, and losing friends made during chemo sessions, among other topics.

“The only issue Will didn’t hit was the financial issue, which I asked Will about,” added Siegel. “He told me he had to write his script to pay all his medical debts.”

By Nicole Sperling, Los Angeles Times October 6, 2011

What GPs can learn by listening to patients | The Gaurdian

I was nervous at first and wasn’t sure what to expect. I write this having just come back from our first patient participation group (PPG) meeting. After this inaugural face-to-face, I came home feeling that the disparate group of our patients who made an effort to give up their time were generally pleased that they had attended.

I was really glad to meet them all outside the consulting room yet still on practice turf, managing to listen to their views. And in return I gave them some insight into the workings of their local surgery as well as a whistlestop tour.

Every patient who attended had two things in common – health needs and being registered at our practice. It’s only right that they get to voice their opinions, and that we as a practice can adapt to their needs and provide them with an even better service.

The government has encouraged practices to form such groups as part of a DES, or directed enhanced service. These are – in theory – optional initiatives which reward practices in return for work that improves the quality of patient care.

The themes which came up were no surprise. Access featured heavily. What is the best way to access the service that you need exactly when you need it? How long is it reasonable to wait for an appointment? What constitutes something medically urgent? Talking through some real life examples brought things to life in a way which I had never experienced before. And I applaud the group for volunteering their experiences.

It’s only by looking at these stories, analysing the pathway of exactly what happened and how it could be improved, that any headway can be made regarding changing practice systems and protocols.

Most doctors and patients would agree there is a lot of second guessing about how the other thinks. Often people get experiential snippets from friends who have tales as patients, or moans about the pressures of work from the odd doctor friend. But tonight it was all out in the open. We were all part of the same team, able to drill down on some issues which looked at the service as a whole, not just from one viewpoint. We were trying to work together to solve problems.

For instance, at one point there was mention of whether we offer ‘double appointments’ rather than rushing to squeeze everything into ten minutes. “Of course …”, I said, “but …” , the point being that if everyone asked for these all the time we’d really struggle in terms of capacity, so there needs to be some selection criteria around being allowed to book double appointments.

There was a real sense of unity by the end, and I think there was a realisation that patients need more input and ownership when it comes to their practices, and that providing a decent primary care service is actually quite a complex business.

We live in a world of diminishing budgets and increasing demand, which unavoidably leads to both implicit and explicit rationing. We touched on this thorny topic, as well as other broader issues around general practice itself – continuity of care, part-time clinicians and self-care which will become a big feature of future primary care as it is in some other European countries.

I am looking forward to our group evolving and generating ideas and solutions, and I hope by March next year we will have made some positive changes which will benefit both the practice team and our patients.

My hope is that people across the land get involved with their PPGs. And it doesn’t necessarily mean attending lots of meetings. Patients will be able to have their say via structured surveys which may be online or on paper.

Most importantly, all patients are to be represented by these groups and I was glad that our practice manager re-iterated this during the evening. Young, old, fit or infirm, we are all patients at some point in our lives, so we ought to seize this opportunity to discuss how best to make it as good an experience as possible. Originally posted on www.guardian.co.uk

On a New Frontier of Patient Engagement | Preface

Closing the Door on Cycle 4 2011

Last time, the Cycle 4 Team and I were continuing our journey across Canada –remaining kilometers: 1500, Toronto to Digby. We had already completed roughly 5500 from British Columbia. So no sweat, right?

Well, no. There was sweat. Plenty of it. Half of the reason cyclists always wear glasses is to avoid rain, bugs or dirt in their eyes. The other half is to avoid sweat splashing from the rider in front of them.

No matter the amount of perspiration, the next few hundred kilometers would be extremely special for me. I was fortunate enough to bike through my hometown in Toronto’s east end, and enjoy seeing all the places that have meaning to me; my grandparents’ street, the Tim Horton’s where I usually meet friends, the mall where I had my first job.

My second “hometown” of Kingston, where I spend more than half the year as a student at Queen’s was also one of our stops. To see my friends and family welcoming me home, in both cities, just spurred me on to pedal faster and harder for the last few legs of our ride into Quebec, New Brunswick, and Nova Scotia.

I can firmly say that no other region in the world looks more like Europe than rural Eastern Canada. Now, I may not have seen many places—heck, I haven’t even been to Europe—but the cobblestones on the roads, the smell of fresh produce, and the relaxed aura the neighbourhoods transported you from a small Quebecois village to a countryside villa in France. The people wave, echo, “Bonjour!”, with beaming faces; they may not have known who we were or what we were doing, but for us to roll through their home made them feel special. The intricate architecture of their town’s churches made even those non-spiritual thank God for the journey we were embarking upon.

Most people saw the Cycle 4 Relay as an innovative way of raising funds and awareness for the cause of your choosing, however it was really much more than that. What other opportunity allows you to go from end to end of your country, observing the quiet beauty and delicate landscapes that we usually take for granted? There’s so much you can miss while driving, and so many actual roads you don’t get to appreciate—they call it a “scenic route” for a reason.

The day we finished, we were required to take a three-hour ferry, from New Brunswick to Nova Scotia. Yeah, three hours! That’s a long time, even when you’re not waiting for one of the biggest finales you’ll experience in your life. I suggested watching Titanic to pass the time; it’s three hours too right?

Getting off the ferry in Digby, the ocean spray misted our faces as we prepared to pedal our last 10 km. However, we wouldn’t be pedaling alone; we had been honoured with police escorts into town on motorcycles (I’m also inquiring to using these year round at home). You know the saying “as far as the eye can see”? Well, this was the true meaning of the phrase: thousands upon thousands leather clad chopper-riders lined the streets as we rode to be welcomed by the mayor of Digby. The kind words he and the supporting Wharf Rat Rally shared with our team left us smiling through our tears. It was a spectacular finish to the most important thing I’ve done with my young life thus far.

We didn’t wake up at 5AM every morning to be praised, we didn’t cycle through the night to be honoured, we didn’t fight through hail and thunderstorms to be applauded–this was about finding an eventual cure for diseases that effect our lives daily. Riding for a father who passed away from cancer, for an uncle with Type 2, or like myself, a newly diagnosed Type 1 trying to set an example and share the flame that’s been alit within me for only two years now. We all had different goals, but we became one big family–riding for everyone’s family. I’m so blessed to have met all our riders…I have an automatic smile when I think about you guys.

In my past 21 years, there have been moments where I take mental pictures because I know later when I’m old and grey, it will stand as a definitive point. You know the saying: when your time is comes, your life flashes before your eyes. The past 23 days I’ve been blessed enough to capture endless flashes: feeling so insignificant and miniature admiring the Rockies, easy silence and bliss through the Prairies, dipping our feet and wheels into the Atlantic; and touching sentiments from teammates, pride exuding through their sweaty grins, hugging me as if I was their own kid. My camera isn’t full, I’ll get some new film for next summer.

“Listening to the Patient Voice” – a Planetree story

I’ve long been surprised that Planetree.org is not better known by everyone who talks about patient-centered care, patient engagement, etc. I attended one of their webcasts in April and wrote about a great booklet they discussed.

I’m taking the liberty of pasting in here an item from their latest e-newsletter, because it illustrates how they think and how things unfold as a result. __________

Listening to the Patient Voice How It’s Done at Platte Valley Medical Center

Including patients and families in the development of a truly patient-centered care experience formally took shape at Platte Valley Medical Center in 2008 with the formation of the hospital’s community focus group. Staff from clinical and non-clinical departments volunteer and are trained to participate in an interactive process to listen and respond to patients’ feedback through quarterly care-centered interviews. To date, we have completed eight sessions. Testimonies are then used to assist with critical problem solving, program development, and measure successes. Concrete action steps, developed with the patient and family, are used for house-wide staff training. Through a video presentation and newsletter, entitled The Patients’ Voice, hospital staff is invited to “Munch and Learn” sessions to hear patients’ stories and apply what they learn to their daily work.

Lessons Learned from our Patients’ Voice:

  • Typical is not Typical
  • Patients Want to Learn More
  • Patients Don’t Know the “Lingo”
  • Working Together Makes a Difference
  • Preparedness is Key
  • “Little Things” make a “Big Difference”
  • Communication is Key to Patient Perception

Accomplishments / Outcomes:

  • Improved listening skills and an openness to total transparency and collaboration;
  • Overall HCAHPS rating has now surpassed the national average;
  • We can measure care improvements with every testimony (i.e., hand sanitizer usage rates doubled after a patient expressed concern staff wasn’t using it enough);
  • Structured rounding has increased the early identification of problems and their resolution prior to discharge, decreasing post-discharge service recovery requests;
  • Development of a new outpatient service request form ensures scheduling happens in accordance with information the patient is given;
  • Extended hours in the ambulatory post surgical unit have led to satisfaction and comfort for both patients and nurses;
  • Development and implementation of Total Joint University led to a decrease in the length of stay in those who participate in the program;
  • Implementation of a cardiac support group is championed by two patients;
  • Clinical rounding on complex medical patients ensures an efficient and effective interdisciplinary approach to patient care.

“It is exciting and extremely gratifying to go through this process as a team and work together with patients and their families to create processes and improvements that, in the end, make real differences in our patients’ lives,” describes PVMC’s Vice President of Nursing Kurt Gensert.

Reposted from epatients.net