How Can Cancer Patients Contribute to Science?

Interview with D. Ross Camidge, MD, PhD, Director, Thoracic Oncology Clinical and Clinical Research Programs; Professor of Medicine, Division of Medical Oncology University of Colorado Denver

During the recent Lung Cancer Town Meeting in Chicago, Illinois, Janet Freeman-Daily interviewed Dr. D. Ross Camidge about how lung cancer patients can contribute to cancer research. Dr. Camidge says there are several ways that are each equally important. Watch the full video below to find out.

 

How Can Cancer Patients Contribute to Science? from Patient Empowerment Network on Vimeo.

Comparing Cancer Treatment to Bug Control

When farmers try to manage insects in their crops, they figure out what dose of pesticide yields the best results. They do this based on understanding which bugs are the most harmful to their crops and what level of poison best combats them. This analogy may send shivers up the spines of organic eaters out there, but it does have relevance to the way chemotherapy is used in treating cancer.Amy Gray

It turns out that not all cancer cells (i.e. insects in the crops) are equally harmful within a tumor.   Some are much more aggressive. When a broad-based chemo is used to kill all the cancer cells, it often leaves behind the most resistant ones, allowing them an opportunity to take over the tumor.

A quick look at evolution explains this phenomenon. Dr. Robert Gatenby, chair of radiology and co-director of the cancer biology and evolution program at Moffitt Cancer Center and Research Institute, says “We tend to think of cancers as a competition between the tumor and the host, but at the level of the cancer cell, cancer cells are mostly competing with each other,” he says. Competition within a tumor reflects a basic evolutionary principle, one which cancer cells utilize as well as normal cells.

Given this theory, Gatenby and his team wondered about the perfect level of chemotherapy that would repress the more aggressive cells, rather than encourage them to overtake the less aggressive cells. In the experiment, they took cells from two different breast cancers and grew them in mice. The mice were then treated to two separate chemo protocols. Group One mice were given lower-dose chemo and then skipped sessions if their tumors shrunk. Group Two mice were given continuous but gradually lower doses of chemo.

The researchers were surprised that 80% of the Group Two mice showed better response in reducing cancer growth. Some of the tumors disappeared completely.

This research is in its early stages and requires quite a bit of personalized chemotherapy analysis. One fly in the ointment – patients have to overcome the mindset that cancer treatment kills all cancer cells. They have to be content with the knowledge that not all cancer cells need to leave the body in order for a treatment to be successful.

In other words, leave the ladybugs and kill the locusts.


Source:

http://time.com/4234896/is-more-chemo-better-for-cancer/?xid=homepage

http://stm.sciencemag.org/content/8/327/327ra24.full.pdf+html?

 

Mental Health & Cancer

Anxiety, fear and depression are commonly associated with life-changing events – especially cancer. People with cancer may find the physical, emotional and social side effects of the disease to be stressful. This stress may result from changes in body image, changes in family or work roles and physical symptoms due to treatment. Family members and caregivers often feel these same stressors, as they fear the loss of a loved one. They may feel angry because someone they love has cancer, frustrated that they “can’t do enough,” or stressed because they have to take on more at home. So many of these feelings are completely normal, but what is typical and when may outside help be needed?

According to The American Cancer Society, signs that the patient or a loved one may need help are the following:

  • Suicidal thoughts (or thoughts of hurting himself or herself)
  • Unable to eat or sleep
  • Lacks interest in usual activities for many days
  • Is unable to find pleasure in things they’ve enjoyed in the past
  • Has emotions that interfere with daily activities and last more than a few days
  • Is confused
  • Has trouble breathing
  • Is sweating more than usual
  • Is very restless
  • Has new or unusual symptoms that cause concern

If you or a loved one have experienced one or more of the above symptoms, there are many options for help.

Speak with your cancer team

If you find any of the above symptoms to be true, one of the first steps may be talking with your cancer team. Your team should be able to answer any questions, talk about your concerns, and, if needed, refer you to a mental health professional. Anxiety occasionally stems from the fear of uncertainty from treatment or medication side effects, so knowing what to expect may be the first step in coping.

Seek support

Once you have spoken with your cancer team and support system to determine a treatment plan, put it into action! Any of the below activities may supplement the treatment prescribed by your doctor in making both you and your loved ones feel less alone and anxious during this difficult time:

  • Training in relaxation, meditation, or stress management
  • Counseling or talk therapy
  • Cancer education sessions
  • Social support in a group setting
  • Online support groups
  • Medications for depression or anxiety

Get moving

Exercise has been proven to improve individuals’ quality of life and physical functionality. Though rest and relaxation are crucial to maintaining a healthy mind and body, regular exercise may help maintain and even improve your health. Exercise may help during treatment by improving balance and physical abilities, lowering the risk of osteoporosis and heart disease, and lessen nausea. Even more importantly than physical health, exercise may improve patients’ self-esteem, mental health and quality of life.

Every individuals’ physical needs and potential are different, so it is important to speak with your doctor about what exercises are best for you. Because the stage and treatment plan for cancer patients differ, so may each patients’ stamina and strength. Staying as active and fit as possible is essential to maintaining physical well-being during treatment, so tailoring an exercise program that fits your ability and preference is essential.


Resources:

cancer.org

cancer.gov

Seven Steps to a Successful Digital Advocacy Strategy

MEO SeptDigital advocacy concerns the ways in which you engage your audience online and inspire them to take action around your cause. Using digital tools and applications can amplify your issue, while giving you new opportunities to listen and engage with supporters, and monitor your progress.

Creating a digital strategy will help you focus on your goals more clearly, choose the right digital tools, promote key messages, and measure outcomes more effectively. Ultimately, the right strategy gives you the best chance of using digital channels (like Facebook, Twitter, Instagram, etc.) to reach the right audiences with the right messages at the right times to advance your advocacy.

Step One: Set Your Communication Goals

The first step to any advocacy strategy is to establish clear objectives and goals that you hope to achieve. What are you trying to accomplish? For example, you might want to increase public understanding of the issues you advocate for, mobilize supporters to take action, or raise funds to support your cause. You will need to set SMART goals, which are:

  • Specific
  • Measurable
  • Attainable
  • Realistic
  • Timebound

Specific – define your goals as clearly as possible.

Measurable – put figures on what you want to achieve e.g. increase visits to the website by 40%; gain 100 new Twitter followers or Facebook Likes.

Attainable – make your goal attainable in terms of the resources and capabilities you have.

Realistic – to be realistic, a goal must represent an objective toward which you are both willing and able to work.

Timebound – your goal should be grounded within a time frame.

Step Two: Define Your Target Audience

Who does your message need to reach? Obviously, you want to reach as many people as possible, but by choosing which audience to prioritize in your digital communications you will improve your reach, enhance relevance and put your resources to the best possible use. Find answers to basic demographic questions about your audience, what issues they are concerned with, alongside which online communities inform, inspire, or influence them. You can then tailor your content more specifically to match your audience.

Step Three: Choose the Right Social Channels

Once you’ve identified your target audience, map this information to social media behavior to help determine which social channels to concentrate on. Publically available reports, like Pew Research Center The Demographics of Social Media Users, can help you with this step. Social media are dynamic and constantly changing. When you develop your digital advocacy strategy, be prepared to be flexible. As new networks emerge you might want to add them to your strategy, but it’s important to always relate this back to your goals and your audience to ensure it fits your plan.

Step Four: Create Compelling Content

What is the key message(s) you need to convey to your target audience? How will you communicate it? Sharing the stories of
real people affected by your cause will be the most powerful and compelling content you can create. Share this content via blogs, videos, podcasts, email, etc. Bear in mind the content that works best on the platforms you have chosen. The continuing growth of visual platforms, such as Pinterest, Snapchat and Instagram mean that incorporating visual content into your digital strategy is important. Whichever type of content you create include a clear call-to-action. Make it clear and unambiguous what the next step is after reading or viewing your content; for instance, sign a petition, share on Twitter and Facebook, or donate to your cause.

Step Five: Implementation

Time is probably the biggest challenge in implementing your strategy. To achieve results and credibility you have to be prepared to commit time regularly to producing and promoting content and engaging with your audience. Decide on how much time you can realistically devote to implementation. Do you have time to write regularly for a blog? Would it be better to make short videos instead? Create an editorial calendar and list the dates and times you intend to post blogs, Facebook posts, Twitter updates, etc. Use a scheduling tool, like HootSuite or Buffer, to schedule you social media updates in advance. There are numerous tools and applications, many of them free, which can help you spend your time more efficiently and productively on social media.

Step Six: Monitor Social Media

It’s important to monitor social media on a regular basis to keep on top of what people are saying about you, your organisation, campaign, or issue. It also gives you an opportunity to find relevant online discussions related to your cause, allows you to adjust your strategy in real time and guides you to key online influencers and opinion leaders who can help amplify your message. Setting up a simple Google Alert (email updates of the latest relevant Google results based on your queries) with relevant keywords is a good place to start. Use a tool like Hashtracking to monitor a particular hashtag, related hashtags, and the top influencers of that hashtag.

Step Seven: Measure and Evaluate

The final step is to measure and evaluate your progress, adjusting your strategy if necessary. Some key metrics to track are the number of followers you attract and retain, which social media channels drive the most traffic to your website, the number of comments you get, and how many times your updates have been shared. Google Analytics will provide you with detailed analytics to measure your website performance. Each of the main social platforms also has their own analytics built in. Other useful tools include:

  • TweetReach measures the reach and exposure data for your tweets
  • SumAll measures your Twitter follower growth, mentions, and engagement
  • Klout measures your online social influence via a “Klout Score”, which is a numerical value between 1 and 100.
  • Spredfast measures data gathered from Facebook, Twitter, YouTube, and Flickr, to show how many people you’ve reached and whether or not your target audience is engaging with you.

Final Thoughts

Digital advocacy helps amplify advocacy efforts by potentially reaching more people, in more places, faster than ever before. It works best when it is aligned with your existing offline tactics. Think about how you can integrate your everyday advocacy activities with your digital strategy to maximize impact. Don’t expect digital advocacy to work right away. It is a strategy that will succeed long-term, rather than be a quick success. If you want to see real results, you must be prepared to commit to it long-term. Finally, keep in mind that social media are constantly changing and evolving, and you will need to keep evaluating your strategy to ensure you are maximizing your opportunities to engage meaningfully with your supporters.

Patients as Partners Attendee Julie Walters on Putting the Patient First

Julie Walters discusses the Patients as Partners Event. Blog from our parters at The Conference Forum.

Putting the patient first: Time to stop talking & start doing

It’s rare that you find yourself in the right place, at the right time, with the right people. But it happened last month.

I was part of a small but determined group of people in Philadelphia ready to mount the pharma barricades and, in our view, talk sense.

The event was not just another industry conference. This one was called Patients as Partners and, now in its third year, it meant business.

The pharmaceutical industry doesn’t mean to be inhumane, but sometimes it just is. Regulations have tied good people so much in knots so that the following happens:

  • No outcomes shared from clinical trials, even to those who helped to run the trial. It’s like taking part in a marathon and being told you couldn’t know your finish time
  • No thank you’s to the real people who took the time and considerable energy to take part and try new medicines in development
  • No personal data shared of sometimes invasive procedures like MRIs and xrays. It’s like your data became someone else’s property at the doctor’s door

It’s nonsense, but how do we change such bad, ingrained habits? Like anything in the world, change takes a small but committed group of people.


As one person put it so simply and clearly:
How would you like your mother to be treated if she took part in a clinical trial?


Someone saying thank you at the end of the process would seem a good start.

Trailblazers are starting to make a difference: patient data delivered in real time to those who took part even while a trial is still ongoing. Yes it is possible! Not easy, but possible. Families affected by a condition in the same room as those developing new treatments so they can learn from each other. The lawyers are not comfortable but again it can be done. It has got to be better than observing patients talking about living with their condition from behind a two-way mirror. Not so much patients as partners; more patients as criminals.

The industry’s behavior is motivated by fear; fear of getting it wrong, fear of going too far, fear of being accused of trying to sell a family a drug years before it’s even been tested (yes really!) and fear of their career coming to an abrupt stop.

I understand how it’s come about but this fear-based approach is no longer fit for purpose in a world that now has the technology to truly share experience and knowledge.

So if your colleague attended #Patients2016, ask how you can help & wish them luck. We’ll need it.

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” Margaret Mead