Patient Advocacy: Six Steps to Craft a Compelling Message

Patient advocacy involves sharing your unique knowledge and experience of a disease or condition with the ultimate aim of raising awareness and influencing people to create a desired change.  This might include speaking at an event, telling your story in the media, or working with an organization to develop new treatment guidelines.  This month’s post will show you the steps you should take to create a compelling message to get key issues across to your audience.

1. Develop Your Key Message

The first step is to work out the key message you want to communicate. Asking yourself the following questions will help you focus on the main issues.

  • Why do I want people to know about this condition?
  • Is very little known about the disease?
  • Are doctors not very good at diagnosing it?
  • What is the impact of the condition for me and for others?
  • What improvements are needed? Locally? Nationally? Internationally?

An effective message is credible, clear and convincing – ideally you should be able to communicate it in less than one minute – for example, “Cancer-related fatigue is poorly understood, but has been reported in 30–50% of breast cancer survivors in the first 5 years after treatment.”  The recommended approach is to have one primary message supported by two or three secondary messages. Write down your core message first. The purpose of the secondary messages is to support the core message and to explain how it can be achieved.

Insider Tip

Patient advocate and blogger, Kay Curtin (@KayCurtin1), who is a stage IV Melanoma patient, suggests taking a look at what other organisations are doing before committing “precious time and resources on replicating what’s already been done.”  Christina Lizaso (@btrfly12), co-moderator of the #gyncsm Twitter chat, agrees. “Look first to collaborate and move things forward vs. starting from scratch,” she recommends, “then think outside of the condition – what is the most important thing for someone who has never heard of it to know?”

2. Identify Your Target Audience

Deciding who your target audience is and how best to reach them is the next step. There are several broad groups you might consider, including other people with your condition, healthcare professionals, the media, legislators or the general public. Which group you focus on depends on what you are trying to achieve.  The more specific you are in identifying your audience, the more effective your message will be. To follow on from my example above, if I want the guidelines for cancer treatment to include cancer-related fatigue, I might want to target healthcare professionals, other patient organizations who are campaigning on similar issues, and organizations like the American Society of Clinical Oncology.

3. Craft Your Message

A persuasive message can be summed up in three words “Make Me Care.” Sharing your story and the stories of others affected by your condition is the most powerful and compelling way you can do this.  As Jo Taylor (@abcdiagnosis) founder of After Breast Cancer Diagnosis says, “your story is everything – it raises awareness and shows the passion behind why you are trying to make change as a patient advocate.” Jo also believes your story connects you to others with a similar story, which in turns helps to build strong networks to bring about change. Dementia advocate, Pablo Barredo (@Diario1Cuidador) points out that stories help create bonds not just with patients but with their caregivers too. “Patients and caregivers want personal stories and people who will understand them, not scientific terms they may not understand,” he says.  “They need to feel connected to someone who speaks their own language and understands them.”

Insider Tip

When sharing your story, author and breast cancer blogger, Nancy Stordahl (@NancysPoint) points out that “you have to be willing to share from your heart. Be real. Be you. It’s all about being authentic. Always come back to that. Allow others to see your vulnerabilities. When others see that you’re authentic, you’ve made it easier for them to care, not just about you, but about your message(s). Once they care they’ll want to learn more.” Antibiotic resistance campaigner, Vanessa Carter (@_FaceSA) agrees that authenticity is key. “You have to keep telling your story from the heart,” she says, “which is not easy when you’ve repeated it for so many years. It takes a lot of practice. I think it’s one of the greatest arts of advocacy.”

Be prepared that telling your story might make you feel emotional and vulnerable, so think carefully about how much you are willing to share before you make the decision to share it.  Let the audience know your boundaries. Be mindful too of boundaries if you are talking about a family member. How conformable are they with you sharing their story or aspects of your own story that may affect them? In Nancy’s words, “each person needs to find her/his own voice over time, figure out what works and feels comfortable for you, and then go with it.”

4. Create a Compelling Call-To-Action

According to the WHO, “you cannot mobilize people unless you ask them to do something. Aim to craft messages that will convince your audiences to act – rather than messages that simply communicate what you want to say.   As Christina Lizaso reminds us, “awareness is not the end goal – it should be taking you to education and to action.”

Think about what you want your listener or reader to do when you are finished telling your story? What will motivate them to act?  Outline clearly the next steps they need to take.  “Awareness should immediately be followed by an opportunity for action,” says breast cancer researcher and advocate, Jamie Holloway (@jamienholloway). While a “dramatic personal story is a more compelling ‘hook’ than just rhyming off a list of facts (no matter how alarming the facts are!),” says Carolyn Thomas (@HeartSisters), author of A Woman’s Guide To Living With Heart Disease,  “a story by itself isn’t the message.”

Insider Tip

Alison Cameron (@allyc375) feels strongly that sharing a personal story should be a starting point for action, not the end goal.  “For me, the personal story has its place yes, but is a starting not an end point, “she says. “The crucial thing is not to fall into ‘inspirational patient’ mode but to work with those listening to come up with concrete actions for change. I got very weary of being parachuted in to ‘tell my story’ then kicked out swiftly after being patted on the head and told how “inspirational” I am. What changed as a result of all that? Not a great deal.”

5. Communicate Your Message

Now that you have identified your target audience and crafted your message you need to think about how to communicate it. The most straight forward way of communicating is directly such as a face—to-face meeting, an email, or a phone call.  Plan ahead for how you will share your story.  What supporting material will make your story stronger? Can you share research data to support your key message(s)?  You don’t need to use too many facts, and detailed data – pick the data that is most relevant to your audience to help make your point; for instance, state data would be important to a state legislator, while patient outcome data would be relevant to healthcare professionals.  The WHO recommends you use facts and figures wisely – if you use too many it can overload and confuse your audience. Balance statistics with stories that convey the human cost of disease.

You should also use blogs and social media to spread your message to a wider audience. 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 means that creating visual content is more important than ever. There is a reason the most widely shared content nowadays is highly visual because visuals can rapidly create an emotional response and convey an idea very quickly. The type of visual assets you can create include images, videos, and infographics.

Insider Tip

Jo Taylor created her own infographic to raise awareness of the signs of secondary breast cancer. There are many tools out there which can help you create appealing images without any design skill. I’ve put together a list of free tools here which you may find useful.

6. Promote Your Message

People are more likely to believe and understand a message heard from more than one source. Promote your key message(s) through social media and encourage people to spread it through their social networks too. Research shows that 69% of people share information because it allows them to feel more involved in the world, and 84% share because it is a way to support causes or issues they care about. By making it easy for visitors to your website or blog to share your content, you increase the likelihood that they will take this action. Make sure your social sharing buttons are clearly visible on your site. This is the most obvious (though sometimes overlooked) way to encourage readers to share your content. By placing the buttons on the side or at the end of the article, people will be more inclined to share the article.

Insider Tip

Use a tool like Click to Tweet in your posts. This useful tool generates one-click tweet boxes or links that can be shared through your website, your blog, or via email, to increase social shares.

Wrapping Up

Raising awareness is the first step on the path to change. Change won’t happen right away and it will require patience and persistence. Siobhan Freeney (@breastdense) founder of Being Dense, an organization which raises awareness of breast density and its associated links to breast cancer and screening, believes “awareness is the precursor to change,” and you need “resilience, research, passion and patience” to succeed.  If success feels slow in coming, don’t lose heart.  As triple negative breast cancer blogger, Catherine Foy (@mytripleneglife) points out, “without you realizing it, your story may have given hope to someone struggling.” Even if your story hasn’t changed the world, it may, to quote Kay Curtin, “change somebody’s world.”

Notable News: June 2018

There’s a little something for everyone in the news this month. Immunotherapy looks promising for men; lung cancer does not. More women can forego chemo, and African Americans and Latinos have a new warning sign. Preventable cancers are on the rise, but your amount of alcohol consumption might help you change that. There’s a lot of news this month, and it’s all right here so you can pay attention and stay empowered.

Speaking of paying attention, African Americans and Latinos have a new pancreatic cancer warning sign. Recent findings show late-onset diabetes, after age 50, is an early sign of pancreatic cancer in African Americans and Latinos, according to this report from accessatlanta.com. The link between diabetes and pancreatic cancer is still unclear, but the study showed that African Americans were three times as likely to get pancreatic cancer after developing diabetes, and Latinos were four times as likely. While pancreatic cancer is rare, you should discuss your risk with your doctor should you get a late-onset diabetes diagnosis.

Another new report offers good news for women. New evidence shows that many women with breast cancer can forego chemotherapy as part of their treatment, reports washingtonpost.com. Findings from the federally sponsored, largest ever breast cancer trial indicate that women who have the most common type of early-stage breast cancer, with low and moderate risk of recurrence, don’t require chemo after surgery and won’t be subject to the often harmful side effects. The study previously showed that women with low-risk of recurrence didn’t need chemotherapy, but there was some question about those with moderate risk. After further study of patients with moderate risk, researchers determined that those who did not undergo chemo did as well as those who did. The type of cancer studied is hormone-driven, has not spread to the lymph nodes, and does not contain the HER2 protein. The findings affect more than 85,000 women per year and are expected to change the way early-stage breast cancer is treated. More information can be found here.

There’s also good news for some men. An early stage trial that was presented at the annual meeting of the American Society of Clinical Oncology finds that immunotherapy looks promising as a treatment for some prostate cancer patients, reports bbc.com. Unfortunately, the treatment doesn’t work for the majority of patients, with only 10 to 15 percent of patients having any response to the treatment. Researchers are hoping to determine which patients are most likely to respond. More information can be found here.

However, worldwide the news is not quite as positive. Lifestyle cancers are on the rise and increased prevention is needed, reports sciencedaily.com. Lung, colorectal, and skin cancers have all increased worldwide over the past ten years while other cancers have decreased, according to the Global Burden of Diseases (GBD) study in which researchers analyzed 29 cancers and then reported their findings based on age and sex for 195 countries and territories. Lung and colorectal cancers are the leading causes of cancer deaths worldwide despite the fact that they can be preventable with such things as dietary changes and reduction in tobacco usage. The GBD also found that the United States was the third leading country in new cases of cancer per 100,000 people in 2016. Australia and New Zealand were the first and second respectively. Syria was the lowest in both new cases of cancer and cancer deaths per 100,000 in 2016. The country with the highest rate of cancer deaths per 100,000 in 2016 was Mongolia. Here you can find the full list of cancers analyzed in the GBD and where they are most likely to occur worldwide.

In other lifestyle news, your alcohol intake may be affecting your health. Less alcohol means less cancer or death, reports livescience.com. A new study reveals that light alcohol drinkers (fewer than seven glasses per week) had a lower risk of cancer and death than those who drank more alcohol or no alcohol at all. The study combines the risks of cancer and death from other causes whereas most studies pertaining to cancer risk and alcohol don’t factor in various causes of death. The combination of the two addresses the role of alcohol in overall health. More about whether or not you should put down your wine glass can be found here.

Finally, those cancers pertaining to lifestyle are often likely to come with stigmas attached to them. While most people believe lung cancer is preventable and caused by smoking, forbes.com contributor Bonnie J. Addario offers a different perspective about the stigma of lung cancer and how it has hindered research. Smoking is not the only cause of lung cancer, Addario points out. In fact, she states, 70 percent of lung cancer patients have long-since quit smoking or never smoked at all. Lung cancer, as we learned above, is the leading cause of cancer death worldwide, and Addario notes it is the leading cause of cancer death for both men and women in the United States. Perhaps it’s time we look at lung cancer differently, as Addario advocates here. It’s worth the read.

 

ASCO 2018 Lung Cancer Roundtable

A Lung Cancer Roundtable: Takeaways from ASCO 2018

Lung cancer experts Dr. Jeffrey Crawford from Duke and Dr. Edward Kim from Levine Cancer Institute speak about key take-aways from this year’s ASCO meeting including immunotherapy updates, newly identified genes, the role of liquid biopsies and specific questions patients/care partners should be asking as the lung cancer landscape continues to evolve.


Transcript

Andrew Schorr:

Okay.  Here we go.

Hello and welcome to this Patient Empowerment Network program produced by Patient Power.  I’m Andrew Schorr from Patient Power, and we’re discussing an update from the big American Society of Clinical Oncology meeting, ASCO, and what it means for patients and family members dealing with lung cancer today.  I want to thank our financial supporters for making grants to support this program, Celgene and Pfizer.

So we have two noted experts with us.  We have Dr. Jeffrey Crawford from Duke University and the Duke Cancer Institute in Durham, North Carolina, and Dr. Edward Kim from the Levine Cancer Institute down the road also in North Carolina, in Charlotte, North Carolina.  Dr. Crawford, welcome to Patient Power and the Patient Empowerment Network.

Dr. Crawford:

Andrew, thank you.  I’m glad to be here.

Andrew Schorr:

Dr. Kim, welcome to you.

Dr. Kim:

Pleasure, Andrew.

Andrew Schorr:

Okay.  Gentlemen, let’s start.  So I walked into the ASCO exhibit hall, which is many football fields wide and long, and I was impressed with so many companies devoted to helping doctors and their patients understand the specific biology, molecular composition of the tumor that somebody might have for example with lung cancer.  Dr. Kim, is this where it’s going, is that sort of precision medicine?  And why is it so critical for patients and their doctors?

Dr. Kim:

Yeah, thanks, Andrew.  I think it’s really important to know how the new standards are changing.  We’ve been used to a lot of therapies and how we assess folks for decease such as biopsies and histological diagnoses, and now it’s not just about that.  It’s about trying to figure out what genes exist that are unique to each person’s individual tumor.  And we know that these genes are differently made up in different folks, so just to call somebody who has a non‑small cell lung cancer, and that’s the area that myself and Dr. Crawford cover, is really not the whole picture any more.

We’ve seen this in breast cancer.  We’ve just kind of come to accept it over the last couple decades, that you’re either a hormone receptor‑positive breast cancer patient or your tumor is HER2 positive or not or you’re a triple negative, and that’s means none of those markers are present.

Well, we were never that sophisticated in lung cancer, frankly, to have the equivalent of a triple negative even though we did, and we started is seeing this in the early 2000s, especially as we looked at first the mutations like EGFR and translocations like ALK and ROS1, and now that number is just really exploding as far as the number of markers that a clinician has to check just at baseline to make the proper assessment to treat a patient with non small‑cell lung cancer these days.

And that’s exciting, but it’s also daunting in that the data and the drugs and markers are changing so frequently that it’s hard to keep up, and even as an expert it’s hard.

Andrew Schorr:

Now, Dr. Crawford, you’re in research a lot as well, and so this multiplying of genes, you keep identifying new ones, right, and then it’s a matter of finding out, well, which genes are important at which time for which patient, right?

Dr. Crawford:

Correct.  As Ed was saying, it’s a complicated task, and I think we get now a lot of information.  When we do next‑generation sequencing, we get literally hundreds of genes.  Some of them are actionable, some aren’t, and really understanding which are and which aren’t and now to interpret that is becoming a field of its own.  So molecular tumor boards have started to try to dissect this at the institutional level so people can sit down with pathologists, (?) like the pathologist‑clinicians, try to work through how to move forward on an individual patient basis.

Andrew Schorr:

So, Dr. Kim, we hear about immunoncology, immunotherapy, and drugs that are being tested in many cancers to try to help the immune system be boosted, I guess, to fight the cancer.  Maybe you could explain that because there was news about that at ASCO, wasn’t there, for lung cancer?

Dr. Kim:

Yeah.  And certainly it seems like every major meeting, Andrew, has news about immunotherapy.  And the really nice part about it, speaking very selfishly, is that there has been a lot of news about immunotherapy and lung cancer, and I get to tease my melanoma colleagues, that, yeah, you know, we know it’s been around for greater than five, six years in melanoma, but it required a large scale sort of cancer to take this into the main stream.

And lung cancer is one of the largest.  It affects so many people out there, and to have these trials testing immunotherapies and these FDA indications, has really transformed things.  What we explain to people is that it’s not like the vaccine programs in the past in that the immune system is a very sort of gray area for a lot of folks.  Some people think you can take vitamins and boost your immune system.  Other people think you just have healthy living it will do it, and all those things contribute because your immune system is really like your micro environment throughout your entire body, and a lot of things affect it, and it affects a lot of things.

But what’s really cool about these newer generation drugs that are impacting the cancer process is that cancers have become smart.  They are able to build up defenses to be sort of stealth inside the body, and so even though there were bad things happening to you your body couldn’t tell that they were cancer cells versus normal cells.  And so these new checkpoint inhibitors have focused on trying to break down the stealth or the defenses that these cancer cells have been using to invade the immune system.

And so now you’re really empowering your own body’s immune system to fight the cancer.  And that’s really exciting.  The side effects, there are some but have generally been very well tolerable.  There are always a percentage of patients who can get a hyperactive immune system, and that’s usually what causes a lot of symptoms we see, but all in all‑‑you know, we use Jimmy Carter as a poster child, he’s like 150 years old, and he’s on an immunotherapy being treated for a stage 4 melanoma and doing very well.  So that’s what my patients see out there, that’s why they’re asking about it.  We have to select the right people who is appropriate.

Andrew Schorr:

Well, Dr. Crawford, let’s talk about selection.  So we’ve alluded to testing to understand what’s at work or what sort of immune levels, we hear these terms PD‑1 and PD‑L1, and they’re even mentioned on telephones commercials for lung cancer drugs.  So how do we know whether this changing world of immunotherapy applies to an individual patient?

Dr. Crawford:

Well, that’s a good question.  So I think we’re learning as we go about biomarkers for immunotherapy, but certainly the one that’s out there most notably is PD‑L1, and so that’s a marker of this protein that Dr. Kim was talking about.  It’s an immune checkpoint, so PD‑L1 when it finds the PD‑1 receptor down regulates or lowers the immune system, and that’s a natural, naturally occurring process.  It’s important so our immune system does get overly revved up, but what happens in cancers it often gets overly depressed and suppressed, so we have inhibitors, drugs that work by inhibiting that reaction that allow the immune system to emerge and attack the cancer.

So what’s really cool about this is that the immune system itself is what destroys the cancer when you take these agents.  This is not like chemotherapy or even targeted therapy where there’s a direct cytotoxic effect on the cells.  This is really enabling your immune system to take over and attack the cancer and destroy it.  So it’s remarkable when we see an x‑ray with cancer disappearing based on restoring the immune system.

So PD‑L1 is clearly an important marker because it’s the way these first‑generation immune checkpoint inhibitors work through that process.  So one would assume that the PD‑L1 measurement would be predictive of who is going to benefit and who is not.  And in some sense it is, but it’s not at all like EGFR testing, where we are pretty confident when we have an EGFR mutation we’ll have a very high response rate, while with PD‑L1 even in patients with expression above 50 percent only about half of them get a good response.

And on the other end patients with very low response, very low levels of PD‑L1, they still have a response of 8 or 10 percent.  So it’s not a perfect marker by any means, but it has been helpful in identifying patients likely to benefit.  And what’s come out of ASCO is more and more about how to select patients for immunotherapy or a combination of chemo and immunotherapy or other options.

Andrew Schorr:

Dr. Kim, let’s talk about biopsy for a minute or how you get the information from the patient as to what’s going on and then what to do about it, if you will.  So getting a lung biopsy is not easy, and I know sometimes there’s a problem getting enough tissue to do all the analysis you want, and now we’ve been hearing about more and more companies that are doing liquid biopsy.  Okay.

So here’s Mr. Jones, you want him to have a lung biopsy.  Would there also be a liquid biopsy or‑‑and not just at diagnosis but would you be doing some of this along the way to see if treatment is working?

Dr. Kim:

Yeah, we’ve always been attracted to some of the other cancers that utilize liquid tests, ovarian cancer, CA125, PSA, prostate cancer, although we’re still not really clear on where we’re supposed to be using that to screen patients, but that has given people is principle that they like to follow things.  And that’s why cholesterol, for instance, was such a powerful sort of marker even though the relevance of it has been questioned by cardiologists.  People can see there is an effect.

So, first of all, we have to say that nothing has completely replaced tissue.  That is really the gold standard.  It still is.  I tell our interventionalists, whether it’s a pulmonologist, interventional radiologist or anyone, I don’t want a diagnosis.  I want tissue.  Because they can make a diagnosis by doing some brushings or some cytology, and they can tell me it’s an adenocarcinoma favoring lung.  That is not helpful.  We need to absolutely have data that allows us to send for these molecular tests which includes, as Jeff mentioned, PD‑L1.

We need EGFR mutation, ALK, ROS1, BRAF.  These are all very important markers now that need to be sent.  And in some cases, at some centers they send for the larger panels.  What you get are 3‑ to 500 genes.  I don’t need 3‑ to 500 genes, but there are certainly clinical trials out there that can help match patients into trials based on these genes, so it is some utility.

But the blood‑based markers and the biopsies are improving.  There are definitely very‑‑there are good data that show concordance when they’re positive.  So if you do a blood test and it shows a positive mutation for EGFR, for instance, you can be pretty confident that the tissue has that as well.  The problem is that when you get a negative result.  And the negative result, those percentages aren’t disconcordant because (?) really show the amount of accuracy, and so you can’t take a negative test at face value.  We don’t standardly do liquid biopsies in patients unless the patient really has a contraindication to doing a traditional tissue biopsy.

As far as the surveillance aspect, as you mentioned, we do that on research.  So on our research studies we do follow patients at every cycle with another blood draw, in addition to what they give in labs, so it’s not an extra stick.  It’s just extra biopsy.  And we do try to follow to see if we can see some of these different mutations either go up or down based on how the treatment is working or not working.  And we’re hopeful that this type of research down the road can lead to more predictive assays that are easier to gather so we can either surveil patients to see if they have cancer, if it’s gone away, if it’s come back.

You can imagine somebody who has been treated for cancer, who has no evidence of disease on a CAT scan but maybe with blood surveillance we can get an early sign if something is coming back.  These are all possibilities and are being investigated, but right now it’s really a backup plan if tissue can’t be adequately gathered.

Andrew Schorr:

Dr. Crawford, of course you’re doing research as well.  Do you agree with this, where we are now and where we’re headed?

Dr. Crawford:

Absolutely.  I think what’s happened in lung cancer is because of this need for tumor tissue, as Dr. Kim has pointed out, it’s really transformed all the interventional things we’ve been doing.  We were moving in the 90s to smaller and smaller biopsies, smaller and smaller needle aspirations just to make a diagnosis, but now we’ve gone back the other way where we’re retraining our pulmonologists to get larger cores of tissues.  They’re developing new techniques to get more tissue, endobronchial biopsies.  CT interventional people have been enormously helpful for getting core biopsies so we get adequate tumor tissue to do the molecular tests we’ve been talking about.

So that’s really fundamentally important and important to have at every institution hospital across the country.  It’s one thing for Levine or Duke to be able to do this, but it really needs to be done in smaller community hospitals and done well by interventional people who can get the tissue we need because the samples can always be tested at a central site if the pathology labs can’t do it locally.  We have to be able to get the tumor tissue.

Andrew Schorr:

Let’s pull this together for a little bit.  I want to see if I’ve got this right.  So you’re having a revolution now in more genes being identified and trying to decide what’s actionable, whether you have approved medicines or combinations or drugs in trials, that both of you have alluded to, could for research purposes you identify something and where that could offer hope to a patient where otherwise the existing therapies might not match up.

So what actions should patients and family members be talking about?  And you said, Dr. Crawford, like at the community level or if they have a university hospital as a choice to go.  What should they be doing now because obviously anybody diagnosed with lung cancer or their family member, we want the longest life and the best chance right now, and yet you have an evolving field.  So what would‑‑Dr. Crawford, how would you counsel patients and family members so that with what you have available, either as approved therapies or in trials, could be available to them?

Dr. Crawford:

Well with, first, let me back up a second to say we’ve been talking mainly about advanced lung cancer.

Andrew Schorr:

Right.

Dr. Crawford:

So it’s important that patients get diagnosed early.  It’s important that patients who are eligible for CT screening and to go that so we can detect lung cancer at an earlier stage and hopefully offer them curable surgery, and then for them to get evaluated by a multidisciplinary team if they’re in early stages to see is surgery alone the right thing, surgery and chemotherapy, a combination with radiation, so all those standards are still present in early‑stage disease.

Now, as we may talk about, immunotherapy and targeted therapy may have a role there as well, but I think our curative strategies remain intact there.  So it’s very important to have availability of a multidisciplinary team that can really assess cancer at all stages.

For the advanced cancer patients then, what’s particularly important is for every patient to get molecularly defined tumor testing being done.  So we not only need to know the pathology, as Dr. Kim has said.  We really need to know the molecular phenotype of cancer to really make the best treatment approach for patients with advanced disease.  And in most patients that should happen before they ever talk about chemotherapy.  We need to know are there better approaches for that patient, and we’re not going to know that without these tests being done.

Andrew Schorr:

How about you, Dr. Kim?  I mean, still chemotherapy is still around, still in combination.  People understand there are side effects, not that there are not side effects with the new immunotherapies, but people would like to skip to the most effective treatment first.  So what recommendations would you have for our listeners?

Dr. Kim:

Yeah.  You know, we’re talking strictly about the advanced lung cancer patients.  The new standards in non‑small cell, both nonsquamous and squamous, now contain an immunotherapy combined with chemotherapy in markers that are lower selected or unselected.  I agree with Jeff.  You know, the biggest struggle we always want to tell our patients is be patient.  Do not let the chemotherapy start without having the results of your markers.

And that’s where sort of this new diagnosis of cancer comes in, the fear of it growing while you’re waiting a couple of weeks for the results of these markers, but we have to reassure patients it’s okay because if you just wait the extra one to two weeks.

And I understand it could take longer getting the biopsy to get enough tissue, sending it away, taking three weeks, and then your doctor, who is maybe not as sophisticated at reading these very, very, 18‑page reports, take some time to evaluate it.  It could be five weeks right there very easily, and we don’t like to wait that long.

But if you do have a marker present, and if it is‑‑and now almost 50 percent of the patients with non‑small cell have this, have a marker, maybe we’ll be able to give you something in lieu of chemotherapy that’s not a pill, single‑agent immunotherapy.  And certainly as a default now we’re seeing again new standards of care.  New standards of care are combination therapy, chemotherapy with immunotherapy based on data that’s been presented in the last couple months.

And so as a biomarker person I love seeing marker‑enriched populations receiving less therapy, but as we begin to incorporate these drugs in our standard regimens we’re seeing improvements that are undeniable and are forcing us now to readjust or new standards.

Andrew Schorr:

Dr. Crawford, so I’ve heard along the way, and I know knowledge is expanding, whether or not some of these newer approaches apply to people whether‑‑you know, whether they smoked or not, whether they had a history.  Where are we now with having the widest array of approaches for the widest array of people whether they’re smokers or not?

Oh, we lost your audio.  Go ahead.

Dr. Kim:

Am I back?

Andrew Schorr:

Yeah.

Dr. Kim:

So smoking is clearly an important factor in outcome for patients, and it’s also somewhat predictive of likelihood of different things.  We know smokers have a lower rate of EGFR and ALK translocations, mutations.  We also know that they have a higher rate of PD‑L1 expression and may be more likely to respond to some of these immunotherapies, but those are just generalized statistics.  And we have smokers who have EGFR mutations, and we have never smokers who respond beautifully to immune checkpoint therapy, so the answer is we have to do the molecular testing and sort out who has what.  Smoking may influence that frequency, but on any individual patient basis we have to have the tests to know how to best to treat them.

Andrew Schorr:

That’s good news.  So, Dr. Kim, you had referred earlier about cancer being kind of wily, if you will.  So is it possible that the molecular testing results at time of diagnosis further down the road may be different?  In other words, some other gene is driving the cancer should it come back or it’s still going, and you need a different approach.  In other words you have to change horses, if you will.

Dr. Kim:

Yeah, that’s a great point, Andrew.  You know, back in 10 years ago, almost 11 years ago when we initiated this trial while I was at MD Anderson called BATTLE, the whole principle was to rebiopsy patients once they completed or once the first line of therapy stopped working.  And for that very point you brought up is that these tumors change.  If you use a baseline tissue that’s a very different environment that that tissue was exposed to.  It has not been treated with chemotherapy, it’s not been under different stressors, and nor has it now begun growing after getting chemotherapy.

So a patient, just as you say, who has been treated maybe there was some success but then it‑‑with chemotherapy it’s always a little transient, and then now the tumor is growing despite being treated, that could be a different tumor.  It’s been shown also by the Boston group that you get transformation to small cell, of all things, in about 15 percent of patients.  And so different histologists altogether.  So who knows what will evolve out of the cancer that’s been treated that is now beginning to grow.

And so I think it’s really important to have a repeat biopsy when this occurs to help again drive the appropriate treatment.  And, as we talked about earlier, if it’s difficult sometimes a liquid biopsy can even be done at this setting if it’s difficult or the patient is has a difficult area to get tissue.

Andrew Schorr:

So, Dr. Crawford, you have lung cancer meetings throughout the year, but the ASCO meeting with like 40,000 people across all cancers from around the world, it’s a big meeting.  You’re involved in research and, of course, with existing therapies as well, how positive do you feel about change and even the rate of change to offer hope for people dealing with lung cancer today?

Dr. Crawford:

I’m as excited about lung cancer as I’ve ever been, and I’ve been doing this for quite a while.  The rate of change is, as Ed has pointed out, is dramatic.  The number of new agents that we have seen over the last year, both targeted therapies and immunotherapies, and the rate of change, it’s not just ASCO every year.  AACR, a meeting that’s normally more basic research, had major breakthrough discoveries (?) inaudible, as well I’m sure this year, and Europe will have additional new discoveries as they did last year.

So it’s really changing every few months, our guidelines through NCCN have to be changed almost monthly, and I think that’s a good thing.  It’s telling us that new knowledge is really being moved very quickly into the patient care arena.

Andrew Schorr:

Dr. Kim, so we’ve talked largely about non small‑cell lung cancer, and you’ve rattled off some of the different types.  There’s a percentage of people, smaller percentage, but people with small cell‑lung cancer.  Were there things you were hearing there at ASCO that could offer hope or in research to help this population as well?

Dr. Kim:

And certainly Jeff is the expert here.  He’s had a long career with it.  Small cell has always been that tough cancer where you get teased a little bit.  Again, if you’re fortunate enough to find someone in limited stage you can try to deliver curative intent therapy.  If they happen to be in an extensive stage it really becomes about trying to give chemotherapy that has a high response rate, and so you feel good about that, but then the difficult aspect of it is that in fact it doesn’t last forever.  And so when it does again not respond, it’s not responding, we’ve got to figure out some things.

The immunotherapies have been very widely tested, and so there are some therapies that are coming.  There are some that are approved, nivolumab, ipilimumab have been used.  They’re trying to incorporate in combination with chemotherapy with these immunotherapies.  There are some other drug classes, (? Phonetic) roba‑T and others that are being looked at very closely in small cell.  So I love the fact that there’s spillover in the small cell because it wasn’t really a high area of importance for a lot of development of drugs, which was unfortunate because we still see those patients, but it’s nice to see that there’s a lot of studies been looking at these types of drugs.

Andrew Schorr:

Okay.  Dr. Crawford, any other comment you wanted to make about small cell?

Dr. Crawford:

I would say it’s an area that’s been difficult to see advances.  Small cell presents generally at more advanced stage, so very few patients can have surgery.  Chemo and radiation can still be curative for early‑stage patients with lymph node involvement who don’t have distant disease, but in the advanced stage setting we’ve been using the same chemotherapy for 20 years.  Our supportive care has gotten better, we’ve made some advances, but we’re hoping immune therapy and others will make a difference.

It’s kind of interesting.  Small cell, you would think, since it’s prevalent largely in smokers, people with smoking exposure, could be very‑‑a lot of mutations being present.  We know that total mutation burden is a nice predictor of benefit in non small‑cell lung cancer, so we think that would‑‑might play out here.  There is PD‑L1 expression in small cell but it’s not as intense.  And there is some separation by PD‑L1 score of benefit for immune checkpoint therapy in small cell, but the responses in general are less than they have been in non‑small cell.  So we’re going to need more, more homework to figure this one out, but I think we’re taking some steps in the right direction.

And as Dr. Kim pointed out, roba‑T is a targeted therapy, maybe one of the first targeted therapies we’ve had in small cell that attacks antigen present on a lot of small cell called (?) B L L 3, and there are other therapies being developed against that B L L 3 because we know that’s an important marker.  So I hope we will see agents that are truly targeted therapies in small cell in the next few years.

Andrew Schorr:

Okay.  So I think as we pull this together, and I think you were rattling off some acronyms, and that’s sort of what we’ve been seeing a lot in lung cancer now.  We’ve talked about EGFR and ALK and ROS1, and we talked about also PD‑L1.  So I know for patients it can be confusing, but look back, review this program with Dr. Crawford and Dr. Kim were saying about if you have someone diagnosed with advanced lung cancer to get that molecular test (? Inaudible) and make sure that the experts like this in your major center like this, that they have the information.  And then if you need to (? Inaudible) you may get (? Inaudible).  So (? Inaudible) but there’s help in second opinions from people like this.  Dr. Crawford, did I get it right?

Dr. Crawford:

I think you did.  You’re a good student.

Andrew Schorr:

Okay.  All right.  Well, we have two professors with us, Dr. Edward Kim from the Levine Cancer Institute in Charlotte, North Carolina, my old home down, and Dr. Jeffrey Crawford from Durham and Duke University.  I’ll say that even though I went to the University of North Carolina eight miles down the road.

Dr. Kim:

You had to say that.

Andrew Schorr:

Yeah.  Thank you.  Thank you both for your work in treating patients and in researching, helping give us a window into this ASCO conference, but I get the sense you‑‑you said it, Dr. Crawford‑‑you’re having meetings every couple of months and talking to your peers all the time, and this is a faster changing field.  Thank god, right?  So thank you so much.  Dr. Crawford from Duke, thank you so much for being with us.

Dr. Crawford:

Andrew, thank you so much and thanks to all the patients who are joining in today.  It’s for you we do all that.

Andrew Schorr:

Yeah, thank you.  And Dr. Kim, thanks.  I interviewed you years ago, and you were at MD Anderson.  Now you’re in Charlotte and you have a wonderful program there.  Thank you for being with us.

Dr. Kim:

Thank you, Andrew.  It’s our pleasure, and again, we’re just as excited as the patients because we get to offer them these really cool therapies and research studies.

Andrew Schorr:

Right.  Okay.  All right.  All the best to our patients and family members watching.  For the Patient Empowerment Network, I’m Andrew Schorr from Patient Power.  Remember, knowledge can be the best medicine of all.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Get Moving: Exercising with Limited Mobility

Over 53 million American adults live with some type of disability. However, one in eight live with the most common form of disability which is limited mobility. This is where a person experiences severe difficulty with climbing stairs or walking. If your mobility is severely restricted, exercising may be something you have come to think of as impossible. But exercise can be performed by anyone, including individuals with limited mobility.

Anyone can benefit from exercise

People who experience problems with their joints, issues with their weight, or a serious injury or illness can enjoy the benefits of carrying out regular physical activity. In fact along with the physical benefits, exercise can also help depression, reduce stress and anxiety, boost energy, and improve your sex life and quality of sleep.

Exercise improves cognitive function

Research has shown that there is a significant link between the body and mind when it comes to preventing memory loss. People who get regular exercise reduce their risk of experiencing a drop in their mental function in their later life. This also includes a reduced risk of developing Alzheimer’s or dementia.

You need to get your body moving to help keep your body and brain healthy. But while the challenges caused by restricted mobility may be unavoidable, you should still be able to find an enjoyable and rewarding way to be physically active.

Flexibility exercises

Stretching exercises like yoga are an ideal way to help prevent injury, improve your range of motion and reduce pain and stiffness. Even with very limited mobility in your legs, you can still enjoy the benefits gained from stretches and flexibility exercises. These can significantly help delay or even prevent further muscle atrophy.

Cardiovascular exercises

These exercises will increase your strength and endurance while raising your heart rate. Cycling on an exercise bike, walking, playing tennis or even dancing are great cardiovascular exercises. If your mobility is severely limited then how about swimming and water aerobics? The water will support your body while reducing the risk of any joint or muscle discomfort. It can also feel wonderfully relaxing too.

Strength training exercises

Strength training exercises use resistance such as weights to help you build muscle while also increasing your bone mass. Strength training is also important in helping to improve your balance, crucial in helping to prevent falls. If you have restricted use of your legs, then instead focus on developing your upper body strength. However, if you have issues with your upper body, then focus more on strength training your abs and legs.

Regular exercise may not feel like a priority when your mobility is restricted. However, instead of focusing on your physical limitations, concentrate on finding rewarding fitness activities that you will enjoy. It may feel a challenge to start with, but it will get easier the more you do it and you will feel the physical and emotional benefits in no time.

Patient Profile: Peter Blaze Corcoran

Patient Profile

Peter Blaze Corcoran

June is National Men’s Health Month. This month’s patient profile emphasizes the importance of continuing to explore options for maintaining optimum health after diagnosis, treatment, and recovery.

Peter Blaze Corcoran concedes that there is never a good time to get a stage four cancer diagnosis, but he says his diagnosis came at a time in his life when he felt secure in managing it. It was 2015 and he was a university professor nearing retirement. He had insurance, a supportive employer, and access to excellent medical care. “It came at a time when I was mature enough, secure enough, and knowledgeable enough,” says Peter. “I felt quite stable in dealing with it.” It was prostate cancer, a particularly aggressive form that was not confined to the prostate. Treatment required a radical prostatectomy and several months of radiation. During treatment doctor’s discovered a second cancer, liposarcoma, but fortunately it is non-threatening to date.

During his treatment, Peter was able to continue working part time which he says helped with his recovery. “It was a bit of a life line being able to work during treatment,” he says. “Work is so central to one’s identity.” The diversion of work meant Peter was able to maintain his pre-diagnosis identity. “I was not a cancer patient, but a professor who was still writing and administering.” It was important to him to maintain that persona because his goal was to return to the classroom, finish his career, and to be able to “go out on top” rather than retire early due to cancer. “The goal was to get back in the classroom, to teach again, and do another book and be involved in the university,” he says. “Which I was blessed to do.”

Peter retired this year and while he does have some health difficulties as a result of his cancer and treatment, he now hasno evidence of disease (NED). He also has some other lasting effects from his experience. “I think I’m on a different path than I would have been without the cancer,” he says. “Cancer is an effective teacher.” Peter says he hopes he has learned to be more compassionate, empathetic, and more humble, and that he has developed a deeper gratitude for life. Cancer has been a source of spiritual development for Peter and he says it has brought him into what he calls a sacred space. “A diagnosis this serious is a wake up call to deeper questions.” says Peter who used his experience as a means to address life’s bigger questions, including questions about his own mortality and about the amount of suffering in the world. He also tackled the “why me” and “will it come back” questions, and in the answers he found what he calls a turning point. “I wanted to craft a life that diminishes the chance for cancer to return,” he says.

To do that, Peter turned to the Commonweal Cancer Help Program (CCHP). The program is a week long retreat for cancer patients in Bolinas, California. Patients can attend the retreat at any stage of their illness, but must be under a doctor’s care and able to care for themselves during the remote retreat. Each retreat is open to 8 or 9 participants at a time and focuses on integrative healing techniques. Peter says treatments include music, art therapy, qi gong, individual and group therapy, traditional Chinese medicine, massage, exercise, and nutrition. “Commonweal helps you integrate treatments and the importance of good nutrition,” he says. Patients develop a practice of intentional healing and Peter says it is a great opportunity for insight into your own cancer. While the program is expensive, Peter says there is a scholarship program. “Many people who’ve been there have made it possible for others to go,” he says. While Peter recognizes that Commonweal’s broad-minded approach may not be in some people’s comfort zone, he says that one of the lessons he learned from having cancer was to say yes to all forms of healing. He says that he had the best of western medicine and he’s grateful for that, but that he continues to be open to a variety of modalities and methodologies that can help him. “What distinguishes Commonweal is that they have analyzed and studied all methodologies that have helped people,” he says. “I feel as though it’s really helped me make a turn for the better in my life.” Peter adds that the program empowers patients to care of themselves. “You set your intention,” he says. “The power comes from setting your intention.”

A career educator, Peter moves forward with the intention of teaching others the lessons he’s learned. He’s very thoughtful about what he wants to share and he emphasizes the importance of his faith community to him and how comforting it was to him to know that people were praying for him and his healing. “My faith community was extraordinarily important in my recovery,” he says and credits being open to the power of prayer in his healing process. Peter encourages others to be open to a variety of healing, too. “It’s good to say yes and stay open to all possible ways of healing whether it takes you out of your comfort zone or not,” he says. Another thing Peter says to say yes to is a buddy. “It’s important to have a cancer buddy,” he says. Find someone who has been through cancer and can give you advice and can help you through the process. He credits his cancer buddy for helping him to be open to the opportunities that cancer might bring. She told him that if anyone should ever mention the word cancer to him, he should stop and pay attention. “Listen for the opportunity to help others,” he says.

You can learn more about the Commonweal Cancer Help Program at commonweal.org.

Men’s Health Month: 4 Healthy Ways To Get Ready For Summer

National Men’s Health month is right before the start of summer. The start of a new season is a great time to make changes and do the little things that can really make a difference in your life. Often these tweaks are very minor, but the reward can be life saving. Men typically have a hard time getting to the doctors, even when they have a serious condition. Up to 60% of men will avoid seeking medical attention. With that being said, the goal should be to promote general well being and prevention for any kind of issue before it starts!

Eat Your Vegetables

The easiest way to make changes for your body is to switch up your diet, that starts with eating more vegetables! No matter how you get them (smoothies, salads, juice), it is best to try to have 2.5 cups a day. Broccoli is packed with antioxidants that helps to fight prostate cancer and is loaded with vitamin K, Fiber, Potassium. According to HealthyEating.Org, “As if that’s not enough, a cup of cooked broccoli offers as much vitamin C as an orange, and is a good source of beta-carotene. Broccoli contains vitamins B1, B2, B3, B6, iron, magnesium, potassium, and zinc too. It also provides fiber and is low in calories.”

Catch Some ZZZ’s

On average, men need at least 7-9 hours of sleep to be at their best. Lack of sleep can lead to many chronic diseases and conditions. From diabetes to cardiovascular disease, sleep is nothing to sleep on. Setting your alarm back one hour has so many benefits. When you have more sleep, you are able to manage your weight better. When you are exhausted you will look for other sources of energy, typically through food. This can cause an overload of calories. A good mattress can make a big difference as well. Sleepholic says, “The ideal mattress is often medium-firm memory foam, latex, or coil spring to ensure you are well supported. At the same time, the ideal mattress provides enough cushion and plush to feel soft and comfortable to your body parts depending on personal factors such as weight, sleeping style and position, and so on.”

R-E-L-A-X

Mental health is not a topic that men often discuss, however it is extremely important. Mind and body go hand and hand. Between pressure at work, financial struggles, and relationship issues, stress can cause really impact a person in a negative way. Headspace is an app that offers short meditations, anywhere from five to twenty minutes that help to lower anxiety, decrease stress, and promote mindfulness. Depending on whatever you are going through, there are meditations for just about everything. In only a fraction of time, you will be able to improve focus and feel better about yourself.

Don’t Shy Away

Being intimate with your partner is very important as well. It helps to release stress, sleep better, and lower the chances of prostate cancer. As men age, performance can become an issue at times. Many different reasons come into play, from medications to stress, the inability to execute can be difficult. Hims offers an interesting way to combat this issue. You are able to connect with online physicians, who after answering a few questions will discreetly send you product. It helps to relax blood vessels and encourage blood throw throughout the body. You will be feeling more confident and satisfied.

All in all, even though men tend to put their health concerns to the side, now is more important than ever. Make small changes, which will in return have a big impact. You only have one body and it is up to you to take care of it!

MedHelp

MedHelp is an online health community that uses technology, data science, and expertise in consumer health behavior to deliver outcomes at mass scale. They help guide people through every step of their health journey and helps them achieve the results they seek.

With MedHelp, you are able to achieve the following:

  • Connect with others just like you to get advice and share your experiences
  • Track your health condition and easily share data with doctors and caregivers
  • Learn from people who have your condition by reading articles and blogs.
  • Ask questions from doctors via a Q&A forum

ASCO 2018

It’s almost time for ASCO 2018, the biggest event in cancer medicine. The American Society of Clinical Oncology’s annual meeting brings together more than 32,000 oncology professionals from around the world to discuss state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field. View the latest ground-breaking science that will be featured at this year’s Annual Meeting here. This year’s meeting will take place from June 1 – June 5, in Chicago, Illinois.

The meeting offers informative educational and scientific sessions that highlight the latest in cancer care treatments. Educational sessions feature world-renowned faculty discussing state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field. Science sessions present the latest ground-breaking research in oral and poster format. You can check out the 2018 Program here.

Follow Along

During the conference you can follow along on Twitter with the official meeting hashtag #ASCO18 or by following @ASCO to get the latest meeting news, research, and announcements.

We will also be tweeting the patients’ perspective during #ASCO18. Follow us on Twitter to experience it through the eyes of patients.

For expert perspectives on controversial topics as well as highlights from education and scientific sessions, check out the official news source, ASCO Daily News.

Join the Conversation

In honor of  the 2018 ASCO theme, Delivering Discoveries: Expanding the Reach of Precision Medicine, we will be hosting a special #patientchat on Friday, June 1st about what precision medicine means for the patient. Please join us on Twitter at 10am PT | 1pm ET.

If you are attending the conference, consider attending the #ASCO18 Tweetup. The official ASCO Tweetup is an informal gathering for attendees interested in the intersection of oncology and social media to meet and mingle. Join us on June 2, 5:45-6:45 PM in the Plate Room food court (North Hall Level 2.5).

How To Reduce Cancer-Causing Toxins in Your Home

Thanks to advancements in medicine, infectious diseases are no longer the mass killers they once were. Unfortunately, cancer has stepped up to the plate with it being estimated that as many as 1,735,350 new cases of the illness will be diagnosed in the USA this year alone. Cancer in younger patients is becoming increasingly prevalent, forcing us to take a closer look at the link between environmental and dietary factors that can increase the cancer risk.

While quality medical care is imperative when it comes to fighting diseases like cancer, certain preventative measures can help avert several medical conditions before they begin. The first place that such preventative measures must be implemented is in our own homes that often conceal a number of cancer-causing toxins. By following these simple guidelines you can significantly limit your exposure to harmful toxins within your home.

Ditch your harmful cleaning products  

Most modern-day homes are flooded with toxic cleaning products that not only destroy our immune systems by overwhelming our environments with disinfectants, but expose our bodies to cancer-causing toxins as well. While bleach-based products are the most successful at killing germs, their fumes are especially dangerous to us while ammonia offers greater health risks than cleaning potential.

Air fresheners are another common household product that contains a substantial amount of potentially harmful ingredients such as Acetaldehyde and Benzaldehyde, both of which are known carcinogens. Although there are a number of organic cleaning products available on the market soap and water always remains a good choice. You can also make use of natural cleaning agents such as vinegar, baking soda and lemon juice to keep your house clean without being detrimental to your health.

Use glass

Polystyrene and plastic are both big culprits when it comes to containing harmful chemicals. Syrene, which is used in manufacturing polystyrene, is a known carcinogen that can leak into your coffee, soup and other hot foods.  Avoid using polystyrene containers to hold any hot food and liquids, opting for recycled cardboard and paper instead. When it comes to plastic, Bisphenol (also known as BPA) is often found in inflexible toys, storage and drinking containers (including baby bottles) and the lining of certain canned products. BPA has been linked to both developmental as well as cancer risks and products containing it should best be avoided.

According to Dr Sumi Dina, a professor at Oakland University School of Health Sciences, a seemingly healthier alternative to BPA known as BPS, has exhibited similar behavior to BPA in terms of multiplying cancer cells, rendering it useless as a substitute.  To avoid possible exposure, buy toys that are labeled as BPA free and make use of glass when it comes to drinking and storing food products.

While we want to rid our homes of potentially dangerous germs and bacteria it is important to note that we are harming our immune systems by aiming to live in a sterile environment. We need to be exposed to germs to a certain extent to keep our immune responses in an optimal working condition. It really is only food prep facilities and medical institutions such as hospitals that require sterile environments. By removing the greatest risks from our homes and allowing the predominantly innocuous germs to roam fairly freely, we will not only reduce the risk of illness but give our bodies the best possible chance to fight the diseases too.


Editor’s Note: For information about lead in homes, how to identify it, and different methods of dealing with it, please take a look at the article: Lead in Your Home: How to Safely Identify Issues and Avoid Exposure.

Healthy Habits to Help Addiction Recovery

Addiction is a chronic condition. A chronic condition is one that is persistent and pervasive — it is hard to shake and can take over one’s life. Addiction cannot be completely eliminated, but it can be well-managed to a point where substance abuse can have less of an impact. This is what recovery is all about — stifling addiction with healthy living and moving on with an understanding that it may rear its head in the future. Enabling this successful recovery is not easy. For many, it requires a life change with a focus on overall health.

Attaining a well-balanced, healthy life with a well-managed addiction involves adopting healthy habits. There are many healthy choices available for most people such as incorporating more activity, becoming mindful, adding spirituality, eating a healthy diet, and ensuring positivity in one’s social circles. Here are some ways to address each of these for successful recovery.

Exercise to Battle Addiction

Studies show that exercise helps people step away from addictions. Working out decreases cravings for substances. When people work out, they can tap feel-good brain chemicals such as dopamine, norepinephrine, and serotonin. Drugs and alcohol also release or increase production of these chemicals. Exercise is a proven way of replacing getting high with a similar level of euphoria. In addition, since exercise can help lower stress, it may play a role in ultimately reducing cravings for drugs and alcohol.

Mindfulness Resets Mental Wellness

Similarly, mindfulness exercises such as mediation have positive impacts on recovery. Mindfulness is the process of living in the moment and attaining self-knowledge through introspection and observation. It is often done in quiet meditation. Meditation helps calm emotions and reduces stress, anxiety, and depression, each of which can contribute to drinking or doing drugs. To many, mindfulness is like the opposite of substance use. Where someone may turn to drinking or using drugs as a coping mechanism for stress, mindfulness involves staring straight into problems. Addiction is escape, but mindfulness is engagement.

Incorporating mindfulness into recovery is simple. Slow down and devote a small portion of your day to quiet reflection and assessment of your life. Soon, you will identify areas where you need improvement. Remind yourself of your progress to support your mental health through positivity.

Diet Improves Physical and Mental Health

A healthy diet supports a healthy, well-rounded life. Nutrition improves mood and helps in all areas of life. When you eat better, you feel better — physically and emotionally. Physical strength bolsters your ability to get through stress and difficulty and avoid injuries, which can lead to abusing painkillers and drinking. Healthy diets also support regular sleep, which, in turn, leads to better physical and mental health. Here are some considerations in adopting a healthy diet:

  • Eat more whole foods. Processed convenience foods are full of added salt and sugar and are deficient in nutrients.
  • Enjoy variety. Food is a source of pleasure — and you don’t have to overeat or fill your meals with unhealthy choices to experience culinary joy. Try different vegetables and unusual spices to broaden your diet.
  • Add protein, which helps addicts repair physical damage caused by substance abuse.
  • Eat when hungry. Some addicts are used to avoiding food and may fear gaining weight.

Surrounding Yourself with Positivity

Friends provide recovery support, and socializing has been shown to increase overall mental wellness. Positivity is key, however. Relapse is possible if someone in recovery associates with those who either use substances or encourage their use. Supportive socialization, however,  can help develop increased self-worth.

Healthy habits pave a walkway for a sustained positive life, free of substances. However, it’s also important to be ever mindful of their risks during addiction recovery.


Editor’s Note: Making a financial plan and sticking to it can help you get back on your feet. Check out this guide on How to Rebuild Your Finances After Rehab.

 

Spotlight On: National Cancer Research Month

Cancer research. It has taught us about risk factors, environmental factors, health screenings, causes, treatment options, metastasis, recurrence, rates of survival, and even how healthy cells might be used to wipe out the cancerous cells. Cancer research is broad and reaches far beyond the study of the infected cells. The research helps us to understand cancer and the many aspects of it that will affect the estimated 1,735,350 people who will be diagnosed with cancer in 2018, not to mention the millions already living with the disease. The years upon years of research devoted to cancer has led to valuable insight and life-saving measures. To emphasize the importance of the contributions of cancer research, the month of May was established as National Cancer Research Month and is led by the American Association for Cancer Research (AACR). More information about National Cancer research month can be found here and here.

When it comes to cancer, the areas of research are vast. Many people may not know that there is more to cancer research than looking for treatments or a cure. To understand cancer, researchers spend years discovering how the disease forms, what environmental factors play a role, and what treatments might stop it. The types of research range from basic cancer research that studies the actual cancer cells to survivorship research that studies how cancer affects people after treatment. Database and population-based research are also critical to learning more about cancer. At cancer.ca the Canadian Cancer Society gives a thorough description of the various kinds of cancer research and the value they have which can be found here.

Once considered a hopeless disease, cancer plagued civilizations dating as far back as ancient Egypt, which you can read about here and here. However, it was in the early 1900s that worldwide cancer research began to offer a more clear understanding of the disease. Groups, like the AACR formed in 1910 and the Canadian Cancer Society formed in the 1930s, brought doctors and scientists together with the mission to search for ways to eradicate the disease and help improve the quality of life for those living with cancer. It was 1971 when President Nixon declared a war on cancer. The disease had become the second leading cause of death by 1970 and Nixon’s signing of the National Cancer Act of 1971 aimed to amplify the national efforts against cancer. The act established the National Cancer Institute (NCI) in its current form. Formerly created by the National Cancer Act of 1937 as the federal government’s agency for cancer research, the NCI was strengthened in 1971 with broader authority given to the director and more emphasis placed on research that included public and private partnerships, funding for additional cancer research facilities, and the creation of an international research data base. Today, the NCI is made up of about 3,500 people and 30 divisions, offices and centers all working to advance cancer research. The NCI, which calls itself the leader in the nation’s cancer research, reports that in the last few decades there have been declines in rates of new cancer and overall cancer deaths and that the number of cancer survivors in the United States more than doubled between 1992 and 2016 from 7 million to more than 15 million and the number is expected to rise to more than 26 million by 2040. More information about the NCI and it’s history can be found here and here and here.

For those affected by cancer, the research can be critical and today it is more accessible than ever. Research groups and advocacy organizations are available to patients and caregivers all day, every day through the internet. Data can be found, reviewed and discussed all from the comfort of your own home, favorite coffee shop, or wherever you have access to wifi thanks to programs such as the Patient Empowerment Network (PEN) Empowered Patient Chats , Patient Cafe , and Facebook groups. Not only are the patient resources increasing in number, they are increasing in value. “Online communities may be virtual, but they are no less real in terms of support and influence,” writes Marie Ennis-O’Connor in her September 2017 post for PEN’s Patients Helping Patients Blog. Ennis-O’Connor’s post, 12 Keys to Finding, Growing, and Nurturing Your Online Community, emphasizes the value of online communities to cancer patients when it comes to research, support, or any number of topics critical to ensure that patients stay informed, supported, and empowered.

What Does It Mean To Be An Empowered Patient?

The term “patient empowerment” is among the top buzzwords in health care circles, but as with many buzzwords, they can mean different things to different people.  The term is most often used to emphasize the value of having patients assert greater control over their health and health care.  WHO defines empowerment as “a process through which people gain greater control over decisions and actions affecting their health” (WHO 1998).  This shift is due in large part to the use of technology that facilitates increased patient access to information via the Internet, peer-to-peer sharing, consumer health devices, and mobile apps.

In a recent Twitter chat, I set out to explore what it means to be an empowered patient today.  The global participation of those who shared their views on the topic shows that patient empowerment is something of universal interest.

Seven Essential Components of Patient Empowerment

1. Information

Information is fundamental to the process of patient empowerment.  Rare disease advocate and parent, Anne Lawlor (@22Q11_Ireland) believes that “an informed educated parent is an empowered one.”  Patients make the best decisions when armed with the right information.  To make genuinely informed decisions about our treatment we must have access to the relevant information needed to make those decisions. “Being informed is key to empowerment for me,” says specialist palliative care social worker, Deirdre McKenna (@KennaDeirdre). “Accurate information, clearly communicated and an available space to discuss and explore options and choices.”

Research shows that access to the right information, at the right time, delivered in the right way, leads to an increase in a patient’s desire and ability to take a more active role in decision-making.  Open and transparent communication and access to a patient’s own medical records is a key driver of patient empowerment. Medical Director and Consultant Surgeon, Dermot O’Riordan (@dermotor) believes to truly empower patients “we should be aiming for the “Open Notes” principles of default sharing of all documents.”    As patient advocate and CEO of Medistori Personal Health Record, Olive O’Connor (@MediStori) points out, “the patient is at the very core of every single service they use – they know everything there is to know about themselves, in the home and outside of it. Yet patient records are not kept with them!”

The OpenNotes initiative began in 2010 as a year-long demonstration project, with 105 primary care physicians at three diverse U.S. health care centers inviting 20,000 patients to read visit notes online through patient portals. Findings from the study suggest that shared notes may improve communication, safety, and patient-doctor relationships, and may help patients become more actively involved with their health and health care.  Evidence also shows a sixty percent improvement in the patient’s ability to adhere to medications, a major problem with managing chronic pain conditions. What is key to the discussion on patient empowerment is that this initiative “demonstrates how a simple intervention can have an enormous impact, even absent advanced technology” (my emphasis).

2. Health Literacy

While access to information is a key driver of patient information, health literacy is  defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” (National Library of Medicine).  Health literacy should come before digital literacy. “Health literacy is crucial,” says healthcare analyst, Matthew Loxton (@mloxton), “and you cannot get empowerment without health literacy.” Soo Hun (@soo_cchsc), Programme Manager at the Centre for Connected Health and Social Care, believes “digital is a key aspect but health literacy, even basic literacy is a must. Not all things digital requires tech know-how but all health information requires basic literacy. An app for meds reminder is no use if a patient lacks understanding of why medication is needed in the first place or why they need to be taken promptly.  We spend too little time transferring knowledge to patients.”

This transfer of knowledge is crucial to the empowerment process, according to Olive O’Connor. “At the first point of contact with the patient,” she says, “education on how, what, why, where and when in relation to a condition or medication should be talked through fully. All other tools (digital, leaflets etc.) should come after the conversation which is key to empowerment.”

3. Digital Literacy

Cornell University defines digital literacy as “the ability to find, evaluate, utilize, share, and create content using information technologies and the Internet.”  It’s interesting to note that opinions vary on whether digital literacy is essential to patient empowerment. RN turned patient advocate and health activist, Kayoko Ky Corbet (@kkcorbet) doesn’t believe that “digital literacy is an absolute requirement, but the ability to find accurate relevant information, and understand the information is.” Breast cancer advocate, Jennifer (@vitalfrequencis) agrees that “digital literacy is not fundamental and should not be part of the equation. Empowerment needs to be across all socioeconomic groups. Otherwise…a whole bunch of patients may never be empowered.”

Dermot O’Riordan is convinced that “whilst it sounds nice to say that digital is not ‘necessary’ for patient empowerment, in practice it is going to be pretty tough to do it properly/completely without digital.” Transplant recipient and rare disease patient, Carol McCullough (@Imonlyslightly ) also believes “digital literacy strengthens the empowerment process.” She too points to “access to your medical information online” as a key component of the empowerment process. “Knowing your personal medical data is strength, as is education about your illness,” she says.

Maternity campaigner, SeánaTalbot (@SeanaTalbot) believes that “those with long-term conditions and access to technology have a better chance of accessing information and support.”  Indeed many patients have found in the online world of peer-to-peer healthcare an environment in which they are supported to become a more empowered participant in their healthcare. As I look back on my own empowerment journey, my progress was advanced step-by-step by learning more about my disease initially from doctors, then through Internet searches, and most helpful of  all  through patient peers online. Finding and being part of a patient community can be an important step on the path to empowerment.

4. Self-Efficacy

Self-efficacy, as it relates to healthcare, is belief in your ability to effect change in outcomes so that you can achieve your personal health goals. The patient empowerment definition which comes to us from the European Patient Forum describes empowerment as a process that “helps people gain control over their own lives and increases their capacity to act on issues that they themselves define as important.”

Developing a sense of personal control over your health is in itself empowering. The empowered patient is confident in their ability to manage their condition. When unsure about where to go or what to do next they will feel confident to ask questions of the healthcare professionals providing their care.  This confidence comes easier to some than others, and even the most confident may need guidance from their doctors in managing their disease. Endocrinologist, Iris Thiele Isip Tan, MD (@endocrine_witch) points out that “some of my patients are surprised when I teach them how to adjust/titrate insulin doses. Apparently not all MDs ‘allow’ this. Some need handholding because they get anxious about the responsibility.”

Digital leader and physiotherapist, Linda Vernon (@VernonLinda), believes “for authentic patient engagement to occur, we need to establish what the patient brings to the table, something akin to an individual, personal take on Asset-Based Community Development – perhaps we could think of it as Asset-Based Personal Development, supporting the patient to tap into their own internal, community or environmental resources to improve their health and wellbeing.  Engaging patients should be as much about exploring what they can do for themselves and to help the health and care system, as what we professionals can offer to the patient.”

5. Mutual Respect

The healthcare professional is the most important contact point for the patient and the system and (dis)empowerment often manifests in the patient/professional relationship. At the heart of the empowerment approach is seeing the patient-professional relationship as a partnership of equals.  Carol McCullough describes it as a reciprocal process of “mutual respect for what each person knows and being allowed to make informed choices. It is not about command and control.”

This is a partnership approach that seeks to balance clinician expertise with patient preference. It recognizes that while healthcare professionals are the experts in their knowledge of a disease, patients are the experts by experience. The empowerment process is about sharing both knowledge and experience to set new goals and learn with and from each other. Dr Kit Byatt (@Laconic_doc) agrees. “Many patients are experts”, he says, “especially rare disease patients.  I’ve learned from many in my career.”

Building better relationships and seeing the patient as more than ‘just a patient’ was a recurring theme in the Twitter chat. Elena Vaughan (@StigmaStudyIE), who is researching the impact of HIV-related stigma in Ireland, believes that “an empowered patient is treated with respect, involved in shared decision-making regrading care and treatment, and is not patronised. For people with chronic conditions, effective communication, continuity of care and establishing a relationship of trust is very important.” Sometimes, as ME blogger and patient advocate, Sally Burch (@KeelaToo) points out, “not all patients are lacking confidence to speak. The problem is being heard.”

Patient and community advocate, Triona Murphy (@Murpht01) advises doctors to get to know your patients as individuals.  “Know your patient!!…and their family,” she says. “No one size fits all! BUT there was/is still a culture of the ‘person’ stops at the door of the hospital and that person is now a patient.’”  As antibiotic resistance campaigner, Vanessa Carter (@_FaceSA) says, “I might be a patient but I am also a creative director by profession. No one recognises me on that level. They see me as an underdog.”

6. Shared Decision Making

This partnership approach allows for Shared Decision-Making (SDM) – the conversation that happens between a patient and clinician to reach a healthcare choice together. Examples include decisions about surgery, medications, self-management, and screening and diagnostic tests. There is ample research which suggests that health outcomes are better in patients who are more involved in decisions about their treatment.

In the SDM model, the clinician provides current, evidence-based information about treatment options, describing their risks and benefits, and the patient expresses his or her preferences and values. Matthew Loxton points to how seldom we have metrics to track whether patient goals are being met. “Yet this,” he believes, “is THE most important part of quality.”

7. A Facilitating Environment

Linda Vernon defines patient engagement as “activating the person’s inner assets and supporting them to make the best use of them.” Being supported is a key component of patient empowerment. Many patients would like to take more responsibility for their own health and care, given the opportunities and support to do so. Empowerment does not happen in a vacuum: it is a two-way process. The patient needs a counterpart in the health professional who welcomes the patient’s involvement and knows how to create an enabling healthcare environment. Kayoko Ky Corbet states she became an independent patient advocate when she realized most doctors simply do not have the time (and often skills) to take this facilitating role and promote shared decision-making that patients desperately need. As Patient Critical Co-op (@PatientCritical) puts it, “if you have a patient who wants to advocate for themselves, and become informed, you also need a doctor that respects the patient’s right to share decision making.”

Is It Empowerment or Participation?

Not everyone likes to use the term “empowerment”, as it implies that it is an authority given to someone to do something. “I balk at the idea that professionals can ‘give’ (usually on their terms) power to the powerless,” says Alison Cameron (@allyc375). “We need to create conditions whereby people can “empower” themselves.” Seána Talbot agrees that patient empowerment “doesn’t mean ‘giving’ people power.’ Rather it’s about ‘enabling’ them to recognise and use their power.”

Perhaps the term ‘participation’ (which is a more active state) is preferable? This distinction is important because empowerment cannot be imposed ‘top down’ (although it can be facilitated).  Sharon Thompson (@sharontwriter) believes that “patients should not be pressurised or need to be in a position of ‘power.’ It should be automatic that a patient is central and key to their care. Patients are automatically empowered when they are respected as being people who are entitled to understand and know about their care.”

Neither is patient empowerment about the patient taking full control or shifting responsibility to the patient.  “If the empowerment amounts to abandonment”, says Matthew Loxton, “then the patient’s health goals are not being met. Patient empowerment should never be an excuse for abandoning or burdening the patient.”

Rather, the empowerment approach, as defined by the European Patient Foundation (EPF) “aims to realise the vision of patients as ‘co-producers’ of health and as integral actors in the health system.”  Caregiver Reinhart Gauss (@ReinhartG) agrees that “patient advocates want to work with not against doctors – to share experiences and to grow in knowledge.”  Vanessa Carter is clear that “we still want our doctors, but they are not there 24/7 so patients need the right tools to make self-care possible.”

Equally, it is about recognizing that there are degrees of involvement and not all patients wish to be ‘empowered.’  There is a spectrum of interest in wanting to assume an active role in care – from being passively receptive to fully engaged. It is up to the patients themselves to choose their own level of engagement. Pharmacist Chris Maguire (@chris_magz) sees this choice as the essence of empowerment. Patients “get to decide how much they want to look into things and take control. Or they want to be guided on the journey and have trust in their healthcare providers. But the key is that they decide the level of interaction and are not dictated to.”  Kayoko Ky Corbet agrees that “true patient empowerment should be about helping patients get involved at their highest potential or at the level they choose.” However, she says “it’s also important to keep the option of involvement open. Ideally patients should get opportunities to change their minds to participate in decision-making later.”

Empowerment as an Ongoing Process

Empowerment is a non-binary, non-linear process. Your needs may change over time. You might feel empowered in a certain context, but disempowered in another. Healthcare communicator, Michi Endemann (@MichiEndemann) makes the distinction that “talking about empowerment as a healthy person is quite different than talking about it as a patient.”  As patient advocate, Rachel Lynch (@rachelmlynch) puts it, “it can be quite tiring being empowered when all you want to be is well.” A sentiment echoed by Kathy Kastner (@KathyKastner), founder of Best Endings, who clarifies how “to me ‘empowered’ assumes I’m feeling physically and mentally up to the task of ‘being engaged’. I’ve seen powerhouses who cannot bring themselves to take responsibility for their own health.”

Mental health advocate and co-founder of #DepressionHurts, Norah (@TalentCoop) calls attention to the fragile nature of empowerment. “Even the strongest can quickly feel disempowered by a deterioration in health,” she says. “Fear disempowers. Sometimes it’s a case of ‘can’t’ not ‘won’t.’”

For those who feel ready for a greater degree of participation in their healthcare (and that of their family and loved ones), Jennifer advises that “being willing to self-advocate, along with self-confidence, communication skills, compromise, research skills, and relationship building” are some of the key traits and skills you need to become an empowered patient. Terri Coutee (@6state), patient advocate and founder of DiepCjourney Foundation, adds that “empowered patients do their research, ask questions, go to appointments organized, and take a friend to help listen.”

Barriers to Patient Empowerment and Overcoming Challenges

What are some of the current barriers to involving patients more in their care? Jennifer points to a “lack of adequate time during the doctor’s visit (on both sides), language barriers, technology barriers, generation gaps, and cultural gaps.”  The solution?  “All solved by building good relationships,” says Jennifer.

Norah also calls attention to the technology barriers. “For older patients simple things like communication (hearing), or uninformed changes are extremely disempowering; as is over reliance on technology for a generation who may not have ‘tech’ understanding or access.”  Tim Delaney (@FrancosBruvva), Head of Pharmacy at a leading hospital in Ireland highlights the fact that “in acute hospitals we treat huge numbers of elderly people whose engagement with social media and new technology is lower. We need to design technology that meets their usability needs AND use whatever suits them best be it old tech or new.” Soo Hun agrees that “the tech savvy few have quicker and better access to health information and therefore can have choice and autonomy. To reverse that we need to make technology ubiquitous and make health information and choice easily accessible.”

Whilst Vanessa believes it should be “governmental policy to have digital resources in place, for example, disease specific websites / apps supported by health authorities,” Kayoko believes it can start with “tech-savvy advocates (like me) who could help patients learn to use simple digital tools.”

Matthew Loxton sees a core barrier to empowerment to be “the large knowledge/power gradients between patients and health care providers. Without access to their data, trustworthy sources of medical knowledge, and the power to execute their choices in achieving health goals, empowerment is an empty phrase.”  Triona Murphy echoes this systemic challenge by clarifying that “the whole system needs to understand the patient’s right to be equal partners in their care. IF that is what the patient wants.”

Sometimes the fear of being labelled a difficult patient can be a barrier to empowerment. “Some patients feel uncomfortable challenging the judgement or actions of their caregivers for the fear of being labelled as ‘difficult’, of offending staff and/or because of concerns of compromising their healthcare and safety,” says Tim Delaney.

Final Thoughts

Not everyone wants to be empowered in making decisions about their care, and not every doctor wants to take the time. Some doctors use medical terminology which is incomprehensible to patients, while some patients have low health literacy skills or come from cultural backgrounds that lack a tradition of individuals making autonomous decisions.  That said, Carol McCullough points out that while “not everyone may want to be empowered, for the health service to be sustainable, more people are going to have to take on more responsibility.”

Medical Doctor and Chair of Technical Advisory Board, Pavilion Health, Dr Mary Ethna Black (@DrMaryBlack) points to the inevitability of the shift towards patient empowerment. “Empowerment is an inevitable shift that is happening anyway, “she says. “We cannot turn back the tide or turn off the internet.”

Kayoko Ky Corbet agrees that we “must understand that patients making informed decisions is the ultimate way to reduce waste, pain and regrets in healthcare. It’s also morally the right thing to do!”  Patient Critical Co-op also believes in the moral imperative that “empowerment essentially means a group or society recognizing your right. Patient empowerment exists as an action patients can take to improve themselves, but the key to achieving that improvement is having a group, organization, or state enshrine and recognize those rights.” In fact, the Alma Ata Declaration defined civic involvement in healthcare as both a right and a duty: “The people have the right and duty to participate individually and collectively in the planning and implementation of their healthcare.” The Declaration highlights the collective dimension of empowerment and the importance of action towards change. By working together to think internationally and act nationally we can draw on each other’s experiences so that as individuals and as a collective we can work towards better outcomes for all patients.  To quote Terri Coutee, “When we gather our collective empowered voices, we feel a strong responsibility to give voice to others.”


I would like to acknowledge the assistance of Dr Liam Farrell in facilitating the Twitter discussion on which this article is based.

Patient and Advocate Profile: Hannah and Carrie Ostrea

Before she was a year old, Hannah Ostrea was diagnosed with a rare genetic metabolic disorder, Neuronopathic Gaucher’s Disease type 2 or type 3. Hannah’s mom, Carrie, says the doctors told her to take Hannah home and to love her, but that she wouldn’t make it past her first birthday. “We became parents on a mission,” says Carrie who immediately began researching Gaucher’s and related diseases. Soon she began contacting researchers and sending samples of Hanna’s cells to them in the United States, Canada and Israel in hope that someone might find some way to help Hannah. Carries learn that very little was being done to understand the devastating effects of Gaucher’s and that the researchers who were dedicated to studying the disease were remarkably under-funded. Carrie also learned that there are a lot of people and a lot of children with rare diseases, but that there are not a lot of answers and not a lot of funding for any of them. She also knew, first hand, that there weren’t a lot of resources available to families with children with rare diseases. Care saw a need and she started taking the steps to fill it.

Her first step was creating the Little Miss Hannah Foundation (LMHF), a non disease-specific, Las Vegas-based, non-profit organization for children diagnosed with rare diseases, children with undiagnosed medical complexities, and children in hospice or palliative care. “All these diseases, they all suck. It doesn’t matter what the disease is.” says Carrie. LMHF provides resources for local children and their families and they also emphasize the importance of supporting the other children in the family. “We want the siblings to know they are important too,” says Carrie who adds that Hannah’s illness greatly impacted the lives of her two other children. “There should always be resources for a family like ours,” says Carrie who describes her experience as the parent of a child with a rare disease as isolating because of the lack of awareness, understanding and resources. The medical community doesn’t have answers and the insurance companies won’t always cover expenses because they don’t recognize or have never heard of the diseases. Through LMHF, Carrie is committed to providing families with financial assistance and the tools and support they need. It is LMHF’s mission to empower patients and their families and it is Carrie’s passion.

In addition to running LMHF, Carrie spent five years working with Global Genes, a rare disease patient advocacy group, and she is now using her business and marketing background as a consultant for organizations like LMHF. She says there are over 7,000 rare diseases and half of those have no support group. The ones that do are often started by patients or parents of patients, like Carrie, that are just trying to save a life. Often times they have little to no knowledge or experience about how to run an organization. “I educate them on where they need to go,” says Carrie who calls herself the big sister of rare disease groups. She mainly advises the groups on the business end of their organizations. As is true for many advocacy groups, funding and awareness are the greatest needs for rare disease organizations and Carrie says social media has helped tremendously. She says she has noticed a strengthening in patient groups and advocacy in the past five years. “Social media is a godsend to rare disease. It has given advocates a platform,” she says. “It just takes one person who is willing to put themselves out there to start a chain.”

Carrie continues to take steps to fill the need she saw when Hannah was diagnosed. She says there is a lot more work to be done, but that she will continue to share her knowledge to help others in whatever way she can. “We are very pay-it-forward in the rare disease community,” says Carrie. “There’s no time not to be.”

Hannah was three when she died. She spent the last seven weeks of her life at home surrounded by her family and in hospice care. She died in Carrie’s arms. The Little Miss Hannah Foundation is her legacy and so much more. “It’s our way of still parenting her,” says Carrie. “We just do it a little differently.”

To learn more about Hannah’s story and the Little Miss Hannah Foundation visit littlemisshannah.org.

Introducing Our New Facebook Community: Empowered Patient Chat

We are excited to announce that our new Facebook group is now live, and waiting for you to join! This new online community builds on the success of our Empowered Patient Chat (#patientchat) tweetchat and aims to extend the discussion beyond Twitter and engage a larger population of patients and caregivers on Facebook.

Living with a disease or other chronic condition is challenging for patients, their families and friends. The Empowered #patientchat strives to engage and empower patients and caregivers by connecting them with each other, sharing resources and inspiration across conditions, and exploring important topics of interest to those in healthcare who want to elevate the patient voice in all healthcare matters. The community is guided by a belief in keeping the patient perspective at the forefront of all healthcare interactions, the strength of peer support, and the power of shared decision making in healthcare. 

Empowered Patient Chat (#patientchat) is a community of patients, caregivers, and healthcare professionals, interested in achieving their best health possible by discussing topics of interest in healthcare from a patient’s perspective. 

Topics of interest have included:

  • Including Patients and Care Partners: Let’s Talk Healthcare Conferences
  • Overcoming Disparity in Clinical Trials
  • Are We Missing the Mark with Patient Involvement
  • Understanding Medical Research
  • How Does Technology Benefit Patients
  • How to Include Patients in Design
  • What to Do When No One Will Listen
  • Caring for the Whole Person
  • Self-Care Goals
  • Managing Stress of Being a Patient
  • and more…

Join our group today

Patient-Centered Research: Is That a Thing?

Medical care is based on research. That was true in the time of Hippocrates, and it’s true in our 21st century lives. The scientific questioning that leads people to start experimenting and investigating something is as old as human intelligence – we’re a curious species, always trying to figure out the “why” on pretty much everything around us. Historically, the research that led to medical discovery has viewed people – the ones most often called “patients” or “subjects” in medical research – as just that: subjects in an experiment. That thinking has shifted over the last half century, though, particularly in light of the story of Henrietta Lacks, and the efforts of her family to have her recognized for the scientific contributions that are her “immortal HeLa cells” legacy.

Which brings me to my topic, patient-centered research, and the question of if that’s even actually a thing in 2018. I had two experiences recently that had me thinking of two aphorisms – or what the 21st century calls “memes”:

  • YMMV – Your Mileage May Vary, meaning that what you experience in a situation might not be what the guy next to you experiences in the same situation;
  • Objects in mirror are closer than they appear – a warning label that is engraved on side-view mirrors on cars in the US, Canada, India, Nepal, and Saudi Arabia.

My two recent experiences, one at a workshop meeting organized by the Robert Wood Johnson Foundation and AcademyHealth titled “Moving Patient-Centered Care Forward: How Do We Get There,” the other at the wrap-up meeting for a PCORI research project, “Defining a Roadmap for Patient Engagement in Imaging CER” (CER = Comparative Effectiveness Research), gave me some strong signals that the research community is waking up to the power of co-design, and people/patient inclusion in all aspects of medical research.

The RWJF/AcademyHealth workshop was framed around a series of four questions that asked how people/patients and medical providers could team up to make patient-centered care, and research into patient-centered care, a reality. The workshop was researcher and policy wonk heavy, with a patient-voice cohort of a dozen people. When I asked why it was still taking so long to get research discoveries implemented at the point of care, there was some pushback from the research folks, who thought I was saying that research should stop once something was known.

This reaction, which expresses frustration with the person/patient community for not “getting it” that research is a never-ending process – nothing in science is ever 100% known, everything is under constant review and challenge, which is how science works – is very frustrating to me, and to every other person/patient who is invited to participate in discussions like this. Person/patient-centered research that includes actual persons (the ones called patients) in the research process is something the patient community celebrates. What we WANT, though, is to see discoveries arrive in clinics and communities, not lie dormant in journals, where those discoveries become grist for more science, but not for actual practice. We’re looking to short-circuit Max Planck’s statement, “A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.” The only way to ensure the patient community, and the research community, can communicate well with each other without misunderstandings is to spend more time in each other’s company, at workshops like this, learning how to avoid what I call “the lost in translation effect.” That’s the YMMV thing I referred to up-post.

My experience with the PCORI-funded research project, and the wrap-up meeting I attended the same week as the RWJF/AcademyHealth workshop, was the one where the object (patient-centered research as an actual thing) in the mirror was pretty darn close: co-designed and implemented research was visible, and the communication between the research team and the patient-voice team was less fraught with lost-in-translation. Since the group had spent more than a year working on this project together, the communication kinks had been worked out over time, and we understood each other’s point of view well. The lost-in-translation stuff we encountered early in the project actually helped inform our work, and our insights in how to better co-design research based on our experience.

The PCORI project was an example of what I was asking for at the RWJF/AcademyHealth meeting: include people-commonly-called-patients in the DESIGN of research projects and activities. Then enlist us to participate in the implementation, the analysis of study results, and the public dissemination of results – THAT approach will drive wider, faster adoption of new discoveries and processes. An additional benefit will be to start eroding public distrust of science as something that “elites” do, that the average human is somehow seen only as a lab subject.

So hey, research and policy folks – work on having people/patients on your team from the very beginning. In fact, if you want to kick off some from-a-new-perspective discovery, ask patient communities to help you create your research question, and define your null hypothesis. Amazing stuff could ensue!