Ten Things You Should Never Say To A Person With Cancer…And One Thing You Should

I get it. People so often just don’t know what to say to someone with cancer.

It’s a shock when someone you care about has received a life-changing diagnosis. Our natural instinct at times of trouble is to rush in with well-meaning phrases and encouraging thoughts.

It may feel to the person saying these things that they are being supportive, but it’s all too easy to say the wrong thing.

So what should you avoid saying to a cancer patient? The following list includes some of the most common things that we in the cancer community have heard from well-wishers. At the end of the list I share the one thing I would have most liked to have heard instead.

1. You’ll beat this

Probably the top-most thing that people say when they want to be supportive is that you’re strong and will beat cancer. While we all hope for the best outcome, we cannot actually be sure of the outcome of the disease for anyone. As breast cancer blogger Nancy Stordahl writes in What Does Beating Cancer Mean Anyway? [1] ”Struggling to live up to some gold standard of what beating cancer means, adds to the already exhausting burden. We need to stop patronizing and judging cancer patients based on misguided battle talk analogies. Cancer isn’t an opponent in some war game you can stomp out by mindset or determination.”

2. You’re so brave

An extension of “you’ll beat this.” This can come across as quite patronizing – especially when it’s followed by a statement like “I couldn’t do it.” The truth is we don’t feel particularly brave, we just don’t have a choice. We do what we have to do to get through treatment the best we can. By promoting belief in bravery and stoicism in the face of cancer, society creates unfair expectations of cancer patients and deprives us of an outlet for our darker fears.

3. My aunt had the same cancer and she was cured

While I’m happy your aunt recovered from cancer, no two cancers are alike. Cancer is a complicated disease and chances are her cancer is not the same as mine. An alternative version of this statement concerns an aunt who died from the “same cancer”. Please don’t go there with us.

4. What’s your prognosis? What are your odds of surviving?

Never, ever ask anyone this question. It is highly personal, intrusive, and insensitive. Enough said.

5. Have you tried [insert latest miracle supplement or diet]. I hear it can cure cancer.

There’s no shortage of advice urging cancer patients to eat a particular food, juice religiously, or try a miracle supplement, however, there’s no scientific evidence that these work and many are downright harmful.

6. The stress of [your divorce, bereavement, job loss] probably caused your cancer.

This is a variation of the “you’re to blame” for getting cancer brigade. “Did you smoke?” asked of lung cancer patients. “Did you breastfeed?” directed at breast cancer patients. All said with the implication that you should/shouldn’t have done a certain thing and really it’s your own fault for getting cancer. In fact, using a statistical model that measures the proportion of cancer risk, across many tissue types, scientists from the Johns Hopkins Kimmel Cancer Center published a study in 2015 which concluded that two-thirds of the variation in adult cancer risk across tissues can be explained primarily by “bad luck.” In other words, a major contributing factor to cancer is in fact beyond anyone’s control.

7. But you don’t look sick

This sounds almost accusatory. As if to be a card-carrying cancer patient you must look the part of a cancer “sufferer”. As cancer patients, we have good days and bad days. On the good days, we look just fine. Other days not so much. How we look is not a reflection of what we are going through.

8. It’s only hair, it will grow back

On the flip side of #7, there are those comments you receive when you do show signs of being a cancer patient. When you lose your hair after starting chemotherapy, you may find your distress dismissed with “it’s only hair, it will grow back” or “lucky you have a nice shaped-head – you can carry off the bald look”.

9. Look on the bright side, at least you will lose weight without having to diet

The crassness of this statement seems hard to believe – but yes, it has been said to cancer patients. Another variation on the looking on the bright side theme – breast cancer patients quite often have to deal with people saying to them “at least you’ll get a free boob job.”

10. You must stay positive

I’ve saved the best for last. Ok, I admit that I caved in when I was first diagnosed with breast cancer to the pressure to be positive because it reassured the people around me. While I accept that for some people, maintaining a positive attitude is a valid coping mechanism, for myself, and for many others, being asked to always show our sunny side is a denial of the times we are in pain, anxious, and afraid.

So what should you say to someone with cancer?

Sometimes there are no right words to say. Sometimes the best you can do is listen, without judgment, without offering any well-meaning advice.

Author Rachel Naomi Remen says it better than I ever could.

“Perhaps the most important thing we ever give each other is our attention…. A loving silence often has far more power to heal and to connect than the most well-intentioned words.”

Having listened first, you could then say something like the following:

“I can’t begin to understand what you are going through/ I am so sorry you have to go through this. I am here for you. What one thing can I do for you right now?”

Knowing we’ve been heard and understood opens up a space for us to feel freer to ask for what we truly need at this moment.


[1] Nancy’s Point What Does Beating Cancer Mean Anyway?

12 Best Practice Tips To Design Helpful Patient Information Materials

As a patient advocate, you may be asked to help review or co-design patient information materials. Or you may wish to create the information yourself because you’ve noticed a gap in helpful information for your patient community.

Good patient information is important for several reasons.

Firstly, it reinforces what a healthcare provider has told the patient. If, due to stress, a patient hasn’t absorbed the information from their provider, a brochure or information sheet serves as a reminder.

Secondly, by educating patients, good information empowers patients with the knowledge, understanding, skills and confidence to take an active role in their health and wellbeing.

Thirdly, by sharing the information with friends and family, their loved ones can take a more active role in supporting the patient.

Whether it’s information for a brochure, leaflet or website, the same design principles apply. Information design should make complex information easy to use and understand, and ultimately empower patients to take a more active role in their care.

The following checklist is designed to help you in your own advocacy work when you are called upon to design patient information materials.

1. Know Your Purpose and Audience

Before you start, consider the purpose behind creating this information. What do you wish to achieve? For example, do you wish to increase understanding or raise awareness of a disease, or give instructions about a procedure or a medication?

Next, who are you creating this information for? Who is your intended reader? Are there health literacy challenges you will need to address with this audience? Consider if audio or video is needed if there are challenges for your audience in reading the information. Consider also if English is not a first language for your intended reader, will you need to create multiple versions of the content in different languages?

2. Use Plain English

Plain English is a way to write and present information so a reader can understand and act on it after a single reading.

Use plain, everyday words. For example, instead of “commence”, write “start”; instead of “in the event that”, use “if”.

Avoid jargon and acronyms. If you have to use medical terminology, explain the terms as you go along. If this clutters up your text, put the explanations in a glossary.

3. Write From The Perspective Of A Newly Diagnosed Patient

As patient advocates, we have most likely been immersed in our disease space for many years. We have become experts in the terminology and language of the medical world. We understand side-effects and know how to weigh up the pros and cons of treatment. But experts are made not born. Think back to those first few days and weeks of diagnosis. Remember the confusion and the uncertainty you probably felt at the time. Put yourself back into those shoes of a newly diagnosed patient and communicate from this perspective.

4. Make It Personal

Write as you would speak to the reader. Using personal pronouns such as “we” and “you” helps create a sense of relatability and trust.

5. Use Direct Language

Adopt present and active tense to make sentences more direct (e.g.” the nurse can vaccinate your child” rather than “ your child can be vaccinated by the nurse”.)

6. Design For Readability

Use short sentences and only include one main point in each sentence.

Try to avoid using hyphens and semicolons.

Keep capitalization to a minimum. Capital letters are harder on the eye. Use lowercase letters throughout the text. Save capital letters for the start of sentences and names.

Left align paragraphs. Left-aligned paragraphs make text easier to read than justified text. Justified text can create gaps between words, which slows down reading particularly for people with dyslexia.

7. Avoid Dense Text

Dense text means patients lose concentration and therefore cannot find the information required. To avoid this, keep your paragraphs short. Short, clear, separated chunks of text encourage those with reading difficulty to continue reading.

Use headings and paragraph breaks to separate blocks of information.

Good use of large text, white space and columns can also help readers to more easily assimilate information. Make sure related information is located together and not split over different columns.

8. Pay Attention to Typography

Typography is the art and technique of arranging type to make written language legible, readable and appealing when displayed. No matter how well written the text is, if it is set out in a typography which is difficult to read, it is going to adversely affect readability and comprehension.

Choose Arial or Calibri type fonts for readability. When it comes to font size, 10 point is too small for most people to read. 12 point is more suitable. Choose 14 point for older people and children. 16 point is used for partially sighted people. Finally spacing between the lines should be 1.5 line spacings.

9. Use Design To Enhance Comprehension

How the information is set out in the document is an important feature of readability and comprehension. People tend to scan when they read information (this is particularly true of online information), so your document should have a logical order and structure to help readers find their way through the information.

You can achieve this in a number of ways, including the use of reversed text (e.g. white lettering on a dark background), headings and subheadings in bold font, bullet or number points. Use bold instead of italics and underlining as italics or underlining make text harder to read.

When using bulleted lists, make sure each item follows logically in sequence. Keep lists to a maximum of eight points where possible and start and end a list on the same column or page.

Tip: Use callouts to highlight key messages for content skimmers.

10. Choose Good Visuals

Visuals such as pictures, diagrams and photos can sometimes say more than words. Ensure the images you use are real, relatable and sympathetic to the reader.

Avoid idealized, ‘photo-shoot’-style images of people.

Choose images that are inclusive. Use images that don’t reinforce negative or stereotypical attitudes especially for ethnicity, age or gender.

11. Be Consistent

Be consistent in your use of design features, such as headings, sub-headings, etc. Describe numbers consistently (for example, don’t use percent on one line and fractions on the next).

12. Signpost to Other Sources of Information

Including other useful sources of information, such as helplines of patient organizations and general sources of medical information is a valuable source of further information and support for patients.

Do not confuse people by covering several treatments and conditions in the same leaflet. Tell people what other information, resources and support are available to them.

Conclusion

Next time you are called upon to design patient information materials, use the checklist in this article to guide you. Providing patients with accurate and actionable information is essential in delivering high quality care to patients and an important element in our patient advocacy.

Patient Advocacy: 7 Ways To Access Medical Journal Articles For Free

Has this ever happened to you? You come across a tweet with a link to a new study in your disease area and you eagerly click on it only to find it leads you to a journal article behind a paywall.   

I’ve lost count of the number of times this has happened to me and the frustration I feel at not being able to access a relevant study without paying an amount I cannot afford. To purchase a single article can cost upwards of $100.  

Over the years I’ve discovered there are some ways to get around this paywall.  Below I’ve outlined 7 tips on gaining access to journal articles. These methods may not always give you access to the full article, but they are certainly worth trying in your search for peer-reviewed literature to better understand your health condition. 

1. Search Google Scholar

Google Scholar provides a simple way to broadly search for journal articles, alongside books from academic publishers.  The site harvests the content of institutional repositories and links them in one record. 

2. Explore online databases

Similar to Google Scholar, there are several online repositories of academic papers free to search online. As I said above, you may not always be able to access the full article, but you will be able to read the study abstract (an abstract is a short summary of the research contained within the study.)  

Core is a search engine and index for aggregated research publications from repositories and journals globally.  

Dimensions is a next-generation linked research information system that makes it easier to find and access the most relevant information. Developed in collaboration with over 100 leading research organizations around the world, it brings together over 128 million publications. Users of the free version can use the Open Access filter to find articles. 

The Directory of Open Access Journals (DOAJ) is a list of nearly 10,000 open access journals and a search service finding peer-reviewed and scholarly journals and articles.  

PubMed, maintained by the US National Library of Medicine, is a free search engine covering the biomedical and life sciences going back as far back as 1951. 

JSTOR gives you access to more than 12 million journal articles in upwards of 75 disciplines, providing full-text searches of more than 2,000 journals, and access to more than 5,000 Open Access books. 

Web of Science covers more than 20,000 carefully selected journals, along with books, conference proceedings, and other sources.  

Science.gov covers the vast territory of United States federal science, including more than 60 databases and 2,200-plus websites.

3. Search for pre-printed publications

OSF Preprints is a platform with openly accessible preprints, or submitted manuscripts that are publically distributed before acceptance and peer-review in a traditional scientific journal. An advantage of publishing preprints is the speeding up of scientific communication and of sharing research results earlier, as it can take a long time between submission of an article till publication. OSF Preprints is developed by the Centre for Open Science (COS), a non-profit organization with the goal of greater openness and reproducible research.

4. Download an app

I have installed an app called Unpaywall as a browser extension on my laptop.  

Unpaywall is an open database of 29,624,840 free scholarly articles. The app harvests content from legal sources including repositories run by universities, governments, and scholarly societies, as well as open (free access) content hosted by publishers themselves. 

Open Access Button is another plugin for Chrome or Firefox that works similarly to Unpaywall. Click on the button while you are viewing a pay-walled journal article and it will search for open access versions.  

5. Ask a university librarian or academic

Did you know that people with access to university databases usually have “free” access to all journal articles, because their university pays for it?  If you know someone who works in a university library or is affiliated with an academic institution, it’s worth asking them if they can help you get access to a paywalled journal. 

6. Ask the author for it

While the publisher owns the article, the author will have a legal version he or she can share. Many authors are happy to share a pdf version of their published article. The author’s academic affiliation will be published alongside the article and sometimes this will include their email address. If not a simple Google search should help you find the author’s email contact.   

Metastatic breast cancer patient, Martha Carlson (@Martha__Carlson) says reaching out in this way can be productive. “I’ve had article PDFs sent to me by reaching out to the author and also through other advocates,” she explained.  

ResearchGate and Academia.edu are both platforms that facilitate making contact with researchers and requesting copies of their articles.  

Note: Do NOT share an article an author has given you anywhere online as this will breach the publisher’s copyright rules. 

7. Rent the article

Finally, some journals allow you to “rent” an article for considerably less than buying it. Ok so this tip isn’t free, but if all else fails, it may be your best option.  

I hope you find these tips helpful. As patients and patient advocates, it is important that we can access the latest evidence-based research to help us advocate for ourselves and others.  

Below you will find a list of websites linked to the sites and tools mentioned in this article. 

Useful Sites

Google Scholar:https://scholar.google.com 

Core: https://core.ac.uk 

Dimensions: https://app.dimensions.ai/discover/publication 

The Directory of Open Access Journals (DOAJ): https://doaj.org 

PubMed: https://pubmed.ncbi.nlm.nih.gov 

Web of Science: https://clarivate.com/webofsciencegroup/solutions/web-of-science 

Science.gov: https://www.science.gov 

OSF Preprints: https://osf.io/preprints 

Centre for Open Science: https://www.cos.io 

Unpaywall: http://unpaywall.org 

Open Access Button:https://openaccessbutton.org 

ResearchGate: https://www.researchgate.net 

Academia.edu: https://www.academia.edu 

These Gift Ideas For Newly Diagnosed Cancer Patients Will Show How Much You Care

Do you have a friend or family member who is newly diagnosed with cancer?

Chances are you’d like to get them a gift to show you’re thinking of them.

While any thoughtful gift will be welcomed, there are some gifts that are particularly helpful at this time.

The gift ideas listed in this post are from my own experience as a cancer patient and other patients’ experiences. Remembering back to the shock and anxiety surrounding the early days of my cancer diagnosis I wouldn’t have been able to say at that time which gift would have been most useful because I simply didn’t know what lay ahead of me. Now from the other side of the cancer shore, I’m much more clued into the type of gift that I would love to have received at that time.

If you’re looking for the perfect gift to help a friend get through cancer treatment find inspiration in the list that follows.  Each of these gifts will be guaranteed to help your friend or family member feel truly cared for because you took the time to think of a gift that is not just thoughtful but useful and practical.

Gifts To Help Get Through Chemotherapy Sessions

I won’t ever forget my first experience of the chemotherapy infusion room – a cold and sterile environment I was ill-prepared for.  Sarah Dow (@he4dgirl) suggests gifting “big thick long soft bedsocks” which she used during her own chemotherapy sessions along with a soft warm fleece blanket.  Although most chemotherapy units supply patients with blankets, there’s nothing quite as nice as snuggling into a blanket lovingly chosen for you, rather than a hospital issue one.

Continuing with the coziness theme, another great gift idea is loungewear. Pick out some soft sweat pants and tops that will be comfortable to wear. If the patient will be in hospital for surgery then pajamas are another perfect gift idea. Consider whether they may face limitations after surgery, for example after my breast surgery I had great difficulty lifting my arms, so I wore button-down pajamas.

Gifts To Help Pass The Time During Chemotherapy

The length of time for chemotherapy sessions can range from an hour to eight or more hours depending on the chemotherapy regimen.  To pass the time Sarah suggests good headphones.  You might also like to consider purchasing a subscription to Spotify or Audible for something to listen to on those headphones.

Creating A Comfort Box

Sarah Connor (@sacosw) suggests creating a “box of comfort” filling it with “tissues, unscented soap and moisturizer, sucky sweets, tissues and something to read.” Or you could buy a tote bag which you can customize and fill with useful items to carry to treatment sessions such as:

  • A reusable water bottle that will keep drinks cool as it’s important to stay hydrated during chemotherapy.
  • A travel toothbrush, toothpaste, and alcohol-free mouthwash to help get rid of the metallic taste chemotherapy.
  • Wet wipes and hand sanitizer.
  • A squishy stress ball.
  • Puzzle and coloring books.
  • A notepad and pen – a gift Nancy Stordahl (@nancyspoint) would love to have received at the time was “a journal or pretty notebook for writing thoughts, making lists, writing reminders.”

Post Chemotherapy Gift Ideas

Chemotherapy does all sorts of not-so-wonderful things to a body.  From sleep disturbance to hair loss, nausea, aching joints and cracked skin, the effects of the treatment linger on.

Here are some gift ideas to bring comfort and ease to the patient.

  • To help your friend sleep, get them a silk eye mask or pillowcase. Add a lavender pillow spray, although be aware that sometimes scent and strong smells can be off-putting for chemo patients (this goes for scented moisturizer too).
  • Organic lip balms to help soothe chapped lips.
  • Foot rollers and mini massagers to ease aches and pains.
  • Paraben-free/sensitive skin toiletries because chemotherapy can make skin more sensitive.
  • Anti-sickness wrist bands to help with nausea.
  • Healthy snack bars, peppermint candy, and herbal teas (peppermint and ginger are good for nausea).
  • Soft hats and pretty scarves (again choose silk scarves as other material may get hot, itchy, and uncomfortable).
  • Chemotherapy can plunge some women into menopause. Julia (@BCCWW) suggests a chargeable, portable fan and chill pillows. Lisa Holtshousen (@LHoltshousen) is still grateful to her teenage sons who gifted her a ‘pearl’ necklace which she kept in the freezer and put on when hot flashes struck, and a box of “20 beautiful fans (the kind where your wrist does all the work) – enough for every spot in the house for quick access.”

More Gift Ideas

If you are really stuck for ideas, gift cards and subscriptions are always welcome. From meal delivery and uber rides to magazine/TV streaming subscriptions and gift cards to purchase books, audio, and games, there are plenty of options to choose from.

Gifts That Can’t Be Wrapped

Not all gifts can be wrapped up with a pretty bow but they are no less appreciated and often the most remembered.  Sarah Connor recalls such a gift: “One of my neighbors came round once a week, took a load of washing, brought it back clean and folded. I had two small children. That made such a difference. But it’s not something you could wrap up!”

Offer to walk the dog, carpool kids to school, do grocery shopping, drop off some meals. “Cooking is a chore,” says Nancy, especially when the patient is fatigued from treatment. “A warm (or cold) food item is so appreciated by the entire family.”

Give the Gift of Kindness

Finally, don’t underestimate the simple gift of kindness. Cancer can be a lonely and isolating time. A card or note to let your loved one know you are thinking of them can go a long way to helping a person feel less alone.

To quote Allie Moon (@alliemoonUK) “I think predominantly it’s knowing that someone is there for you, to listen and to be present. Other than that anything that provides a wee bit of comfort or joy is gratefully received.”

What Do You Do When Your Doctor Tells You Not To Google?

What do you do when your doctor tells you not to Google?  A recent Twitter conversation prompted this question, so I set out to answer it with the help of the patient advocate community.

Not surprisingly the first answer I received was firmly focused on the benefits patients found when they turned to the internet.

Why Do Patients Go Online?

Carolyn Thomas (@heartsisters) takes a pragmatic approach to searching for information online. “Personally, I wouldn’t even buy a coffee maker without checking with Google first to learn as much as I could about useful things like reliability, product features or where to get the best value,” she says. “And if my first stop is an online search for relatively minor things like a coffee pot, you can be absolutely sure that I’m going to ask Dr. Google about truly important things like troubling health symptoms.”

Jennifer Douglas (@mmejendouglas) agrees. “ Whenever a new situation comes up in my family or health I immediately take time to search the internet for more information,” she says.

Vanessa Carter (@_faceSA) calls the internet one of her “greatest allies as a patient who survived an antibiotic-resistant infection that nearly obliterated my face.”  She describes how “without information about antibiotic resistance easily accessible to me on the internet in multiple realms including on websites, journal articles and social media, I do not believe I would have survived such an aggressive antibiotic-resistant infection which required me to participate equally in the management of it, both in and out of hospital settings, at home and even when I lay in an intensive care unit wondering whether my body would get through another day of excruciating pain.”

Many patients cite the reason they turn online is to be able to close the information gap that exists when they can’t get the information they need from their healthcare providers.  As Vanessa explains, “when my doctor or alternative care provider like a nurse or pharmacist was not there to answer my wide-ranging questions such as how to manage my surgical wounds better, or how I could play a role towards improving my antibiotic adherence, and why it mattered to my infection, it was Dr. Google that filled that communication gap.”

Having said that, Vanessa also acknowledges “over time that not all the information I found online was constructive.”  Terri Coutee (@6state) agrees.  “The internet and Dr. Google are a highway of potential disaster unless you utilize the proper navigation tools to do a deeper dive into what is often a life-changing decision.”

Vanessa dealt with this by carefully evaluating the information and then “asked a willing doctor in my healthcare team to validate it,” adding, “I was the information seeker, and the doctor was my compass.” A nice way to convey that in general patients don’t see their information searches as a substitute for clinical advice, rather we still value traditional physician-patient consultations as important to our understanding of online health information.

Building Trust Through Information Sharing

Vanessa’s comment leads me to reflect on patients’ internet information seeking as an opportunity to strengthen trust between doctor and patient.

Research bears this out.

When researchers Sharon Swee-Lin Tan and Nadee Goonawarden systematically reviewed existing research on patients’ internet health information seeking and its influence on the patient-physician relationship, they found that it can improve the patient-physician relationship. [1]

According to the researchers, a majority of patients had felt more comfortable with information from health care providers because of their internet searches and felt more confident with the doctor’s advice.  Interestingly, patients who shared online information felt that they received more attention from their physician, compared with non-sharers.

“I think that it is valuable for patients to be affirmed in their desire to better understand their unique diagnosis,” notes Jennifer. “When I brought my research to my doctor’s visits it enabled me to participate more fully in the discussion about my treatment.  In one situation, I met with my radiation oncologist and brought up my research about the possibility of long-term nerve damage after radiation.  She affirmed that it was a remote possibility, but was also able to share that in her professional career, she had never seen a patient have that particular side effect.  I liked that she recognized that this could be a rare side effect, but was willing to share her years of experience with me during the conversation.  I think that a collaborative approach between patients and health care providers can lead to better understanding and perhaps better quality of life for us, the patients.”

Barbara Jacoby (@letlifehappen) is concerned that the “don’t google it” instruction is an arrogant attitude that is deeply entrenched in the medical community. “One of the main reasons for my work is to improve the doctor-patient narrative in order to improve outcomes,” she explains. “And if my doctor says to me that I should not do my own research on Dr. Google, they are saying to me that they know everything and that tells me that I have the wrong doctor.”

Metastatic breast cancer patient, Ilene Kaminsky (@ilenealizah) recalls how her first oncologist “essentially told me to stay off Google. I felt very uncomfortable with her suggestion that she was the de facto source of information on my disease.”

MS patient, Robert Joyce (@A30MinuteLife) is also of the opinion that this attitude “doesn’t reflect well on any medical professional if they are telling us not to get information. It means, to me, they are not sure themselves and are afraid of being caught out. If healthcare providers want us, the patient, to trust them, we need to be an equal partner at the table. This builds trust.”

Ilene wishes health professionals would act as our partners in wellness. “And as our partners, it’s their responsibility to see to it that we have access to information,” she says. “Suggesting that we not do our own research, read the many books (or listen to audiobooks or podcasts) about our disease is not only ridiculously ignorant but also impossible. We’ll do it anyway, we just won’t come to them when we have questions for fear of reprimand. Not the healthiest outcome for either patient or physician.”

Doctors Google Too!

Not all doctors are averse to Dr. Google.

“In general, my experience has been with doctors who suggest checking something on the internet, even to the point my GP has looked it up, in my presence, to show me some information,” says Robert.

Male breast cancer advocate, Rod Ritchie (@malefitness) has this to say, “so tired of hearing don’t Google medical information. Obviously, my doctor is too, today we searched together for side effects that a drug might have.”

Carolyn, on the other hand, wishes her physician HAD gone online when she visited the Emergency Department with heart attack symptoms. “I now wish that the Emergency Department physician who misdiagnosed my cardiac symptoms had bothered to Google before misdiagnosing me and sending me home,” she says, “because I’m pretty sure that had he Googled central chest pain, nausea, sweating and pain down your left arm, Dr. Google would have come up with only one possible search result: myocardial infarction!!”

How Do Patients Wish Their Healthcare Providers Treat Online Information Searches?

As patients have better access to health information through the internet and expect to be more engaged in health decision making, traditional models of the patient-physician relationship need to be adapted to patients’ changing needs by incorporating their perspective into a relationship-centered medical paradigm.

“Suggesting that patients refrain from Googling is completely inappropriate and out of step with the times,” points out Nancy Stordahl (@nancyspoint). “Besides, by the time a patient lands in front of a doctor, she/he has likely already done a fair amount of Googling. Rather than suggesting no Googling, better advice might be to encourage patients to bring concerns, questions, or whatever that they uncover so such issues can be addressed or clarified. If a doctor told me to refrain from Googling, I’d wonder what she didn’t want me to find out. I’d head straight home and you guessed it, start Googling!”

So what can we do to address this disconnect between the fact that patients WILL search online for health information and the reality that by and large patients are discouraged from doing so?

“Physicians must by now realize that their patients are ALREADY online,” declares Carolyn. “Instead of warning them NOT to do what they’ve been doing for years, a more realistic response would be to give each  patient a prescription-style list of credible websites to check if they do need more information.”

There was much agreement on this point.

“The medical profession must accept information is available all around us and we will see it,” Robert explains. “To ensure we see the right content, we must know the right places to look, and it is the healthcare professional who should be responsible for being our guide.”

Metastatic breast cancer patient Abigail Johnston (@amjohnston1315) makes clear that “no one is more motivated to research and learn and look for more treatment options than a patient with a serious or chronic illness.  Rather than attempting to reserve all the knowledge for themselves, doctors and patients would be much better served by fostering a partnership in the best interests of the patient.”

Abigail recounts that “ironically this just happened with me and my doctor yesterday.  I sent her the link to a study, she called me and we talked about how the trial might fit into my lines of treatment.   She’d never heard of the study and added it to her repertoire.  It’s Phase 1 now but may be helpful later.  This is how it works when it works well!”

Conclusion

The patients I talked to were unanimous in the belief that supporting patients in their online information-seeking activities and guiding them to reliable sources of information builds a relationship of trust and empowers patients to take a more active role in their care. To quote Vanessa, “I’m thankful I had doctors who were willing to support me using any tools at my disposal to empower myself, even though they were far from perfect, because we had both almost lost hope, yet here I am, another e-Patient who survived because I had the right support to desperately seek out the answers I needed.”


[1] Tan SS, Goonawardene N Internet Health Information Seeking and the Patient-Physician Relationship: A Systematic Review

J Med Internet Res 2017;19(1):e9

Patient Advocacy: Ten Tips For Twitter Success

I love Twitter. It’s one of my favorite places on the Internet, and one of the few sites I visit more than once a day.

I’ve been a Twitter user for over a decade and in that time I’ve found it has been one of the best places on the Internet to advance my advocacy efforts. From crowdsourcing quotes and opinions, to keeping current with medical research, Twitter continues to be my go-to source for information and collaboration.

Learning Twitter is like anything else in life. The more you use it, the more you learn, and the better you get at using it.

But you don’t have to spend years learning how to become a Twitter pro.

Today I am going to share with you some of my best tips to shortcut your journey to Twitter success.

1.Make Your Profile Stand Out

People are highly visual, and the first thing we notice in a Twitter profile is the picture and the bio.  Most profile images are now mainly viewed on mobile devices. This means that the image itself has to be recognizable in smaller dimensions than it appears on a desktop or laptop screen. These smaller images are known as ‘thumbnails’. For your image to work as a thumbnail, your face must predominate in the original image. Think of framing your picture around your head and shoulders.

Below you’ll find the recommended guidelines for a Twitter thumbnail:

  • Square Image 400 x 400 pixels
  • Maximum file size 5 MB
  • Image types include: JPG, GIF or PNG

You also have an opportunity to personalize your Twitter profile by uploading a custom header image (similar to a Facebook cover photo).  This is prime real estate on Twitter so make the most of the opportunity to bring more creativity and authenticity to your account (for example you might use a picture of yourself holding a sign with a hard-hitting message).

Here are the recommended guidelines for header images:

  • 1,500 x 500 pixels
  • Maximum file size of 5 MB
  • Image types include: JPG, GIF or PNG

Insider Tip:  Go to Canva.com to find a template to create your Twitter header image. Canva templates are already sized to the right dimensions.

2. Craft Your Bio

Alongside your profile image, your bio is usually the first thing people see when deciding whether to follow you on Twitter.  However trying to capture your passion and experience to fit Twitter’s 160 character limit for a bio can be a challenge.  You won’t be able to express all you want to say, so think of this as the opportunity to provide a brief snapshot of who you are and what you do.

Here are some things to consider when it comes to crafting your Twitter bio:

  • How will you describe yourself to pique people’s interest to learn more about your work?
  • Which of your accomplishments will you highlight in your bio?
  • Is there a project you are currently working on? Or a campaign you are part of? Can you link to it in your bio?
  • Are there disease-specific or campaign hashtags you can include?

Insider Tip: Content posted on Twitter is indexed by Google so it makes sense to use keywords in your bio and in your tweets. Think about things that people would search for to find you — a good tip is to look at the Twitter accounts of other advocates in your disease area to see which keywords they’re using.

3. Follow The Right People

If you’re new to Twitter begin by following relevant organizations – non-profits, patient groups, hospitals, etc. Twitter will then auto-suggest people who also follow this account for you.

Follow healthcare professionals, researchers and patient advocates who are tweeting about issues related to your illness. The easiest way to find conversations of interest is to click the native search facility at the top of your Twitter screen and enter disease-specific keywords and hashtags.

Insider Tip: It’s a good idea to organize your followers into Lists. You can create your own Lists or subscribe to Lists created by others.  New to Twitter Lists?  Follow my step by step guide to creating Lists at https://bit.ly/2OOEl18

4. Create Twitter Threads

A thread on Twitter is a series of connected Tweets from one person. With a thread, you can provide additional context, an update, or an extended point by connecting multiple tweets together. When used well, threads are a powerful way to illustrate a larger point.

Learn how to create a Twitter Thread at https://bit.ly/3sktRoa

5. Shorten Your URL Links With Bit.ly

A URL shortener is an online tool that converts a regular URL (website address)  into an abbreviated version that is around 10 to 20 characters long. Use a third-party tool like Bit.ly.com to help you do this.

Insider Tip: Bit.ly does more than just shorten links. You can use it to see how your links are performing in real-time, with insights that show you which content or channel is working best for you, including total clicks and top referring social channels.

6. Use Hashtags Wisely

Hashtags tie public conversations from different users into a single stream, allowing you to connect more easily with existing conversations and discover new people who are tweeting about the healthcare topics you are interested in.  Twitter’s own research into hashtags shows that there is significant advantage to using them. Users can see a marked increase in engagement simply by using relevant and popular hashtags in their tweets.

Insider Tip: Don’t over-do hashtags.  When #you use #too #many #hashtags your #tweet looks like #spam.  Aim to have no more than 2-3 hashtags per tweet. Research shows that tweets with more than two hashtags actually see a drop in engagement.

7. Add More Images To Tweets

Adding visual appeal to your tweet is a smart way to make your content stand out among a sea of content.  You can add up to 4 images to your tweets  – all you have to do is click on the photo icon after you have added your first image, then add up to 3 more images.  Take advantage of this and create a carousel of images to draw a reader’s eye.

Insider Tip: Want to add a GIF to your tweet? Twitter has made it very easy to add GIFs by doing all the work for you within the tweet box. All you have to do is choose an appropriate GIF from the drop-down menu or search for a specific genre in the search box. Photo and GIF attachments do not count towards the character limit in a Tweet. Photos can be up to 5MB; animated GIFs can be up to 5MB on mobile, and up to 15MB on the web.

8. Develop a Regular Posting Schedule

On Twitter, the average lifespan of a tweet is 18 minutes. This means that the more you post, the more of an opportunity you have to get seen.

Insider Tip:  Use a scheduling tool like Buffer or Hootsuite to schedule your updates to reach more people, more often.

9. Join a Twitter Chat

A Twitter Chat is a public Twitter conversation around one unique hashtag. This hashtag allows you to follow the discussion and participate in it. Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people. The chat will be hosted and the host will ask questions along the way to stimulate discussion and sharing of ideas. Popular Twitter chats include #bcsm; #lcsm; #gyncsm; #patientchat.

Insider Tip: There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project at Symplur.com.

10. Pin Your Best Content

Use the “Pinned Tweet” function to showcase your most valuable content at the top of your Twitter profile. In the past, Twitter typically only allowed viewers to see posts in a sequential timeline which meant that your most important or relevant content quickly got lost in the fast-moving Twitter stream. To solve this issue Twitter now allows you to “pin” a tweet (i.e. keep it placed at the top of your newsfeed) giving you more editorial control on what a viewer will see first when visiting your page. Follow this link to learn how to pin a tweet: https://bit.ly/3ggn6RI

Insider Tip: Set a reminder to update your pinned content so it doesn’t appear out-dated. Change the content regularly to highlight the most current campaign or project you are involved with.

Wrapping Up

The key to success with any form of social media is to work smarter not harder. These tips will help you increase your follower count, reach a wider audience, and boost your engagement on Twitter. Implement these tactics the next time you post on Twitter and watch your engagement start to climb.

Here’s to your Twitter success!

Patient Advocacy: 21 Tools To Help You Achieve More With Social Media

Recently I had the pleasure of taking part in an Ask Me Anything #patientchat about social media (If you missed it you can catch the transcript here). I had forgotten how fast-paced a Twitter chat can be and given that social media is such a huge topic, inevitably I didn’t get to cover everything in that one hour.

One thing I really wanted to share but didn’t get a chance to go into in great detail is how useful it is to have some go-to tools to help you do more with social media. So I’ve put together this list of my own favorite social media apps. Whether you want to edit an image, create custom graphics or schedule your social media posts, there’s a tool here to suit your needs. Best of all, each of the tools listed are free so you can try them out before deciding if you want to upgrade to a paid tool or feature.

1. Adobe Spark

A free suite of apps which allow both web and mobile users to create and share visual content such as posts for social media, graphics, web stories, and animated videos. https://spark.adobe.com

2. Anchor

Anchor is an audio recording app for micro-podcasting, audio broadcasting, Q&As, and more. Features like sound clips and transcriptions make it simple to create audio for social media. Billed as “the easiest way to make a podcast, ever,” it lets you record a high-quality podcast, and distribute it everywhere (including Apple Podcasts) — all in one place. No fancy equipment or podcasting experience necessary, and it’s 100% free!

https://anchor.fm

3. BeFunky

There is so much you can do with this tool to enhance your visual marketing assets, including creating collages, adding “one-click” photo effects (there are over 300 photo effects and filters to choose from) and an array of graphics (eg speech bubbles). The basic account is free to use and provides users with access to a library of 125 digital effects. https://www.befunky.com

4. Biteable

A desktop video creation tool. You can choose from a selection of pre-designed templates or you can build your video from scratch yourself. Biteable hosts a large collection of video clips and images (many of these clips are included with the free plan) to add to your templates. It also provides simple animation and claymation sequences to help you produce engaging explainer videos in just a few hours. Biteable’s free plan allows you to create five projects per month and publish HD-quality video to YouTube and Facebook. https://biteable.com

5. Buffer

Buffer is my go-to tool for scheduling my social media updates and with the Chrome extension, you can schedule content easily while browsing. It lets you design specific posting patterns and schedules to optimize your online presence. It’s free to post up to ten updates to one social channel only per day— to post more updates to more channels and to access analytics you will need to upgrade to a paid plan. https://buffer.com

6. Canva

Whether you want a Twitter post or Facebook profile picture, you can create them quickly using Canva’s drag and drop editor. Select from a number of pre-set designs, or create something from scratch. You can also add elements such as custom icons, fonts, charts, animations and illustrations. https://www.canva.com

7. Easil

Easil is a simple, browser-based system with pre-made templates that you can adapt in seconds with simple drag-and-drop tools. It’s especially useful for Instagram and Facebook stories. https://about.easil.com

8. Hemingway Editor

A proofreading tool which clears your text of all unnecessary copy. Just paste your text into the editor and you’ll get an analysis that highlights lengthy, complex sentences, adverbs, passive voice, and common errors. https://hemingwayapp.com

9. Infogram

Infogram is an infographic and data visualization tool. The Basic (free) plan is intended only for non-commercial use, such as personal projects, blogs and presentations, within the limits of fair use. It includes 37 chart templates and allows users to generate up to 10 three-page projects based on their data. https://infogram.com

10. Life of Pix

Life of Pix offers free, high-quality images that are available for personal and commercial use. Each comes with a helpful color palette so you can plan your visuals accordingly. https://www.lifeofpix.com

11. Lumen5

This is a cool tool that enables you to turn your blog posts into slideshow-type videos in minutes. The free plan includes unlimited videos, access to 10 million video files, and 480p-quality video with the Lumen5 watermark. You can also upload your own logo. Upgrading to the Pro plan ($49/month) lets you remove the Lumen5 branding, upload your own watermark and outro, and more. https://lumen5.com

12. Pexels

Pexels provides over 3,800 high-resolution photos, collated from other free image sites — making it one of the largest free image directories. Pexels has also added a large library of stock videos to its site also under the creative commons license. Use the site’s list of popular searches to find the most in-demand stock video. https://www.pexels.com

13. Pocket

I use Pocket to batch my reading of online articles. Whenever I find something interesting I save it to Pocket to read when I have more time to focus. You can also share interesting articles directly to Twitter and Facebook or schedule it to Buffer. I like the daily recommended reading list which always brings something new and interesting into my inbox. https://getpocket.com

14. Quotes Cover

Quotes Cover turns quotes or short text into images for social media and high resolution images for posters or other print design. It’s so simple to use. Simply enter your quote or text and then choose your preferred design elements, such as font, shadow effect, and color. https://quotescover.com

15. RiteTag

This is a useful Chrome extension which gives you instant feedback on your hashtag choices as you type them. It checks the hashtags you begin typing in real time and color codes them according to which hashtag will get the most engagement for you. https://ritetag.com

16. Ripl

A mobile app that lets you create short animated videos with professionally designed templates. Ripl is integrated with the major social media platforms, so sharing your final video is easy. Once you’ve connected your social profiles to Ripl, you can post directly to Facebook, Facebook groups, YouTube, LinkedIn, and more. You can export your videos if you want to use them outside of your social media platforms. https://www.ripl.com

17. Scoop.it

A super content curation platform that allows you to easily find and share unique, relevant content to your social networks, website or blog. The free version will allow you to monitor a single topic and use the content generated on up to two social media accounts https://www.scoop.it

18. Twitonomy

This tool provides detailed visual analytics on keywords and hashtags, top related hashtags and more. You can use it to export tweets to Excel, track clicks on the links in your tweets, and track the evolution of a particular hashtag over time.

http://www.twitonomy.com

19. Unsplash

Unsplash gives you access to a bank of 50,000+ free-to-use photos. All photos are licensed under Creative Commons Zero, which means you can copy, modify, distribute and use the photos for free, including commercial purposes, without asking permission from or providing attribution to the photographer or Unsplash. https://unsplash.com

20. Veed

Say goodbye to clunky video software and hello to one-click editing online.

With Veed, you can create and edit amazing videos, add subtitles, animations, audio and more. It works on your Windows or Mac computer, no software download or plugin required.

https://www.veed.io

21. WordSwag

A mobile application that turns your ideas, quotes, and content into attractive graphics that can be shared on social media.

http://wordswag.co

 

I feel sure you will find some tools in the list above to help you get more creative with social media and achieve more online.

Here’s to your social media success!

Nourishing Your Body and Mind: Nutritional Advice For Cancer Survivors

There are few things more confusing to those of us who have had a cancer diagnosis than dietary advice. From conflicting recommendations from well-meaning friends to advice in magazine articles and online blogs, we can easily become overwhelmed with mixed messages.

To bring more clarity to bear on the topic I spoke with registered dietitian Cathy Leman, who is also a survivor of ER/PR+ breast cancer. In this interview Cathy separates dietary fact from fiction and offers some evidence-based tips for eating a nutritionally balanced diet which nourishes body and mind.

Q: One of the most confusing things, particularly for patients who have hormonally driven cancer, is conflicting advice about consuming phytoestrogen foods (such as soy products). What is the latest scientific evidence on this often perplexing subject?

A: This is a topic where it’s critical to know the facts! There are four main classes of phytoestrogens, of which isoflavones, the phytoestrogen found in soy, is one. Within these classes there are analogs (relating to) and derivatives (derived from). It’s common to consider the term phytoestrogen as “one thing”, as well as view the impact of eating phytoestrogen foods to be the same for everyone.

Phytoestrogen means “plant estrogen” (phyto = plant). Plant estrogens are similar to, but not the same thing as the human estrogen we produce in our bodies, called “endogenous estrogen” (endogenous = produced from within). Research on phytoestrogens and hormone-receptor positive breast cancer is ongoing, yet current data generally supports the safety of eating phytoestrogen foods for the general population, women with benign breast disorders, those at risk, and even in survivors of breast cancer.

Scientific literature reports both benefits and risks, yet the unfavorable effects have been mainly suggested based on data from in vitro, animal or epidemiological studies. Clinical studies often report the absence of unfavorable effects.

Another consideration is that the metabolism of phytoestrogens is highly variable among individuals. Differences in gut microflora, use of antimicrobials, intestinal transit time and genetic variation all play a role.

Take home message: further studies are needed, we don’t yet have conclusive results, there are no recommendations to exclude phytoestrogen foods from the diet.

Q: We hear a lot of talk about adding nutritional supplements to our diet. Are these a good idea?

A: Food first! That’s my professional philosophy, and the science supports. There is room for supplementation, yet not just for the sake of supplementing. Diet is the star, supplements, as their name suggests, take the supportive role.

Q: Do you have any tips for cancer patients who are currently in treatment and may lack motivation to cook healthy meals because of taste changes, nausea or fatigue?

A: My expertise is in working with post-treatment survivors, so I always suggest cancer patients seek the guidance of an oncology dietitian for targeted advice to manage these side effects.

Q: Cancer doesn’t just affect our bodies, our emotional and mental health can also suffer too. What’s the role of diet in improving our overall well-being?

A: When we eat well, it helps us feel we’re doing what we can to be well, and it’s empowering to know you’re taking charge of your health. Also, when one improves their diet, other healthy habits tend to follow, such as getting regular physical activity, prioritizing sleep and managing stress. Also, our bodies and minds require certain nutrients for repair and to aid in transport and storage of the building blocks necessary for overall good health.

Q: For those of us diagnosed with breast cancer we run a real risk of treatment induced osteoporosis (loss of bone density). What advice can you offer us to minimize the impact of treatment on our bone health?

A: There’s much to consider with regard to osteoporosis risk. For example, dietary pattern, exercise type and frequency, calcium absorption rates, minerals and other compounds that impact absorption, and genetic risk factors (that’s not an exhaustive list!). I recommend working with a dietitian to asses individual risk and develop a plan to address any areas of deficiency.

Q: Finally Cathy, for readers who may feel overwhelmed by the prospect of overhauling our diet, what’s the one thing we can do right away that can start to move us in the right direction?

A: Abandon the idea of overhauling your diet. Instead, consider making small, incremental, sustainable habit changes over time.


About Cathy Leman

Cathy Leman helps survivors of hormone-positive breast cancer rebuild trust with food and their body, end food fear, confusion, and overwhelm, eat without stress and guilt, and gain peace of mind and confidence about nutrition, exercise and well-being, so they can rebuild their health after treatment.

Cathy is a registered dietitian, nutrition therapist and coach, personal trainer, speaker, and a survivor of hormone-positive breast cancer. Learn more Cathy and REBUILD, her private coaching program here: www.cathyleman.com

12 Actionable Tips For Social Media Success in 2021

2020! What a year it was for all of us.  In the advocacy world, we saw an unprecedented shift towards online activities.  We relied on zoom calls, webinars and social networks to keep us connected and informed.  Where many organizations and individuals may in the past have used social media as an add-on to in person events, this past year saw the virtual world take centre stage, and with it the need for a stronger social media presence.

I spent the latter half of 2020 teaching social media skills to more patient organizations than I have at any other time in the past decade. The realization that mastering social media has become an essential advocacy tool was brought home to us more than ever this year.

With hope on the horizon that vaccination may bring us closer to something resembling normality again, it is yet unclear how long it will take before the old way of doing things resumes. It is predicted that for 2021 at least we will still be relying heavily on online activities in the advocacy world.

To help you strengthen your online presence and create more visibility for your cause in the new year, I’ve put together this list of 12 actionable tips you can put into practice over the coming months. By following these monthly prompts I predict that come this time next year, you will be able to look back with satisfaction on all you’ve achieved over the previous 12 months.

January

Set SMART Social Media Goals

Get your 2021 social media activities off to a flying start by setting some SMART social media goals for your online activities.

Goals are the forerunner to success. Ask yourself what you would most like to achieve with social media this year, and then set specific and actionable goals to achieve it. For a goal to become a reality it needs to be specific, measurable, attainable, and realistic, as well as time specific. These are often called SMART goals.

February

Conduct a Social Media Audit

Take some time this month to audit your social media activities. A social media audit is a great way to take stock of where you’re at and identify what you can improve on going forward.

Start by creating a simple spreadsheet and list all your social accounts, including those you set up but haven’t used in a while.  Audit how often you are posting on each platform and list which times you are posting and the results you are getting. How engaged is your audience with you on each of your social networks?  It’s a good idea to benchmark where your social activities are at so that when it comes to the end of the year you can look back and see what has worked for you.

Some further things to audit:

  • Have you fully completed your About sections on each network?
  • Are your biographical details up to date?
  • Do you need to include a new call-to-action?
  • Do your cover photos needed updating? Are you still showing that summer picture now that it’s winter?

Want to dive deeper? Download my step-by-step guide to conducting a social media audit at http://bit.ly/3pvjVa5

March

Perform a Content Audit

Look back at your ten most recent pieces of content — blogs, images, videos, etc. Which content worked best for you in terms of engagement (i.e. comments, shares, etc.)? Can you do more with this content?  For example, can you highlight some key statistics and share on social media in a more visual format?  For more ideas on repurposing content visit http://bit.ly/3rEZwBl.

What about the content you spent a lot of time creating which didn’t generate significant engagement? Ask yourself (or even better ask a friend)  if it’s immediately clear what message you are trying to convey.  Can you rework this content to make it more compelling – updating any outdated information, adding new research, refreshing images, etc.

April

Conquer Content Curation

The ability to curate credible content to share with our communities is a key skill for patient advocates. Hereditary cancer advocate, Amy Byer Shainman (@BRCAResponder) believes “patient advocates not only have a responsibility to curate trusted content but that it is an imperative if you are even going to be calling yourself a patient advocate.”

Content curation is defined as the process of gathering information relevant to a particular topic or area of interest.  While this definition sounds simple, there’s a world of difference between simply gathering information and being an effective curator. A good curator knows how to find, aggregate, and synthesize reliable information, putting it into context for their communities and sharing it in a format that is easy to access and understand.

Want to learn more? Go to http://bit.ly/2WSGIAv for my ten golden rules of content curation.

May

Develop an e-Newsletter

This month, consider developing an online newsletter. With the popularity of social media, you may think e-newsletters outdated, but nothing could be further from the truth.   While you can go for a few days without checking social media, most people check their email several times a day. E-newsletters can help you build relationships and credibility and keep your activities to the forefront of people’s minds.

If you blog, use an e-newsletter to send a digest of your most recent blog posts. “I would advise anyone who wants to increase readership to her/his blog to consider sending out a monthly or weekly email with links to new posts and possibly one or two older ones,” recommends breast cancer blogger Nancy Stordahl (@nancyspoint).  “I also share a couple of articles that have been in the news, or that I think might be of interest to my subscribers,” says Nancy.  “Sometimes I share something personal and I often bounce around ideas. I love my subscribers and always value their input!”

Even if you don’t blog, you can still keep your subscribers updated with the latest research and news from the advocacy world by sending a regular e-newsletter. You can also share links to these newsletters on your social media channels.

June

Create Visual Impact

This month is all about getting creative with your visual assets. Visual content is 40x more likely to get shared on social media than other types of content according to research. Furthermore, people connect more emotionally with images than text, and in an increasingly crowded digital landscape images can break through the online content clutter. The type of visual assets you can create include images, videos, infographics, quotes and GIFs.

Check out my guide to creating professional looking graphics at https://bit.ly/3mYMzPe

Related: Patient Advocacy: 10 Ways To Create Share Worthy Content For Social Media

July

Build Your Authority on LinkedIn

Your LinkedIn profile is the cornerstone of your professional brand online. It’s so much more than a place to park your resume.

Take some time to identify how top patient advocates are using LinkedIn to build their thought leadership on the platform. You’ll find they are showing up consistently, publishing thought-provoking commentary and original think pieces and generating high levels of engagement with industry leaders.  The wonderful thing about LinkedIn, as with all social media, is the ability to show up on a level playing field. The same opportunities to build online visibility are open to all – so take full advantage of this by doing more with your LinkedIn profile this month.

Start by optimizing your Linkedin profile at http://bit.ly/2wTorK3

August

Tap Into The Power of SlideShare

Many of us who do speaking engagements have built up our own library of slide-decks over the years. This month dust off those decks and upload them to SlideShare.

SlideShare is the world’s largest professional content sharing community. Surprisingly, given how the platform is optimized for social sharing, including the ability to embed presentations, it’s often overlooked and underused. And because it’s owned by LinkedIn, it’s super easy to highlight your uploads on LinkedIn’s platform – giving your thought leadership a further boost.

Take time to create visually impactful slides – even if this means re-doing some of your original slides.

Boring slides don’t get many views. Make sure to optimize for mobile viewers with big, bold visuals and text that is readable on mobile devices. New to SlideShare? Check out these tips: http://bit.ly/2XcrsyN

September

Increase Facebook Reach

Despite privacy concerns, Facebook still reigns supreme in the advocacy world. However there’s a problem when it comes to making an impact on Facebook. When organic Facebook Reach (i.e. the number of people who see your content without paid distribution) is estimated to currently be as low as 1–3%, succeeding on the platform is more difficult than ever.  Take time this month to consider ways to increase your organic reach and boost engagement on Facebook.

Facebook recommends each post you create should include some type of creative, like images, GIFs or videos. Make sure these creative assets are high quality. Avoid using blurry images or videos or creative that doesn’t accurately reflect your message.

For more tips on increasing Facebook reach, go to http://bit.ly/3pydfIk

October

Get Creative with Instagram

When it comes to consistent engagement, Instagram (now owned by Facebook) is the number one social channel out there. Recent studies have found the engagement rate on Instagram Is 45% greater than on Facebook.  Instagram is the perfect platform to let your creativity run free and, in fact, even have some fun in the process.

If you’re new to Instagram there is a lot to learn. Check out my SlideShare deck to help you get started: http://bit.ly/3rDBKph

November

Become a Twitterholic

Twitter is a powerful tool to help raise awareness of your cause, keep current with research, amplify your advocacy activities, and build collaborative relationships. Twitter thrives on its community and the more you connect with other users the more quickly you will grow your own following.

Joining a Twitter chat is a super way to connect and engage. When you attend a Twitter chat regularly, people will get to know you and in this way, you can quickly develop and grow your own network of supporters.  Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people, for example #PatientChat held every other Friday at 10:00 am Pacific/1:00 pm Eastern.

Many people tell me they “don’t get” Twitter, but I would encourage you to give it a try. You don’t even have to tweet to take part – you can learn a lot from following the right people and listening.

December

Evaluate Your Progress

It’s the end of your social media year. Time to look back and evaluate how far you’ve come over the previous 12 months.

Some key metrics to track are the number of followers you attract and retain, which social media channels drive the most traffic to your website, the number of comments you get, and how many times your updates have been shared. Most social media platforms have their own basic measurement and analytics tools, which you can use to gain information about views and engagement. Take note of what’s working for you – do more of this – and consider dropping things that aren’t generating much engagement.

Here’s to your social media success!

9 Tips to Help You Build a Better Advocacy Blog

Do you blog about your illness?

Many patients find blogging about their condition is not only therapeutic, but is also a great way to connect with others going through similar experiences. 

A blog can also be a powerful advocacy tool – a way to raise awareness, build community and show commitment and passion for the work you do.

This month, I’d like to share 9 ways to help you build a better blog. If you’re new to blogging, these tips will help steer you in the right direction. If you’re a seasoned blogger, why not use this as an opportunity to take stock to see if you’re still on track to make an impact with your blog.

1.Perfect Your About Page

For new visitors to your blog, this will be one of the first pages they will visit, so it’s worth taking time to make it as professional as possible. Use this space to share the story of why you do what you do to advocate for disease awareness and educate and support your community.

2. Check Your Blog’s Load Speed

Does your blog load quickly? A good site will load in 2 seconds. If your blog is taking longer than that, consider that around 40% of people will leave a site if it doesn’t load in 3 seconds. You can check your blog’s loading speed with a tool like GTMetrix.com.

Insider Tip: If you like to add lots of images to your blog, be aware that large images can slow your blog down. Resizing your images can speed up the loading time. Upload your image to Picresize.com for quick and easy resizing.

3. Declutter Your Sidebar

Does your blog have a sidebar? Has it become crowded with widgets? Then it’s time to declutter Marie Kondo style. Get rid of anything that doesn’t add something valuable to the reader’s experience.

4. Showcase Popular Content

One thing that you should keep on your sidebar is a list of your most popular content. Use this space to showcase your best writing. And be sure to put hyperlinks in each of your posts that direct people to other popular posts on the same topic.

5. Make It Easy For Readers to Find Information on Your Site

Providing helpful information is great, but you also need to be sure that readers can find that information. By adding categories and tags to your posts, you make it easy for readers to find the information they need when they come to your blog. It also increases views on your other posts tagged with the same keywords.

6. Create An Email Sign-Up Form

Encourage readers to sign up to receive your latest posts. Nancy Stordahl, who blogs at NancysPoint.com, advises “anyone who wants to increase readership to her/his blog to consider sending out a monthly or weekly email with links to new posts and possibly one or two older ones. “I became very frustrated with Facebook’s algorithms because it seemed no one was seeing posts I shared. Having your own email list puts you and your readers in control.”

7. Add Social Sharing Buttons

By making it easy for visitors to your blog to share your content, you increase the likelihood that they will take this action. When more people share your content, you increase the chance of driving more visitors to your blog, and having your content seen by more people.

8. Choose Typography Carefully

Typography is made up of elements such as font type and size, kerning (white space between individual characters or letters), and tracking and spacing. It’s an important factor in making your content more readable for visitors to your site.

9. Backup Your Blog

Finally, you’ve put a lot of effort and time into your blog and you don’t want to risk losing all your great content. You never know when your blog might get hacked, and the best defense is scheduling regular backups using a plug-in like BackWPup.

Happy Blogging!

Breast Cancer Awareness Month and Its Many Shades of Pink (and Blue)

We are more than half-way through Breast Cancer Awareness Month (BCAM) – impossible to miss given the pink ribbon avalanche that arrives each Fall. While there is no denying that BCAM has played a significant role over the past two decades in raising public awareness of breast cancer, there is nevertheless growing criticism of its off-balance approach to awareness-raising, with many key messages becoming lost in a sea of “pink-washing.” 

“BCAM is a 2-sided coin in our community,” states Jean Rowe, Director of Support and Provider Engagement at The Young Survival Coalition. On the one hand, she explains, celebrating successful treatment outcomes and raising awareness is important, but “on the other side, expectations that come with the pink ribbon in October can be overwhelming, isolating, infuriating and bewildering.” 

The pink ribbon, so long a symbol of breast cancer awareness and support, has become for many a symbol of what’s missing from the BCAM narrative.  When I first pinned a pink ribbon on myself,  I was newly diagnosed with breast cancer. Back then, I felt that wearing a ribbon was a symbol of solidarity, and I wore it proudly. Looking back, I now see that my view of breast cancer was one-dimensional. Standing today on the other side of cancer I see a broader picture, a richer landscape of many shades beyond pink.

A Whiter Shade of Breast Cancer

For Siobhan Freeney breast cancer is not pink. “When I see pink I’m reminded of all things feminine, “ she says. “My delayed breast cancer diagnosis resulted in a mastectomy. There’s nothing feminine or pink about that. I see breast cancer as the elusive ‘snowball in a snowstorm’ because my breast cancer, all seven centimeters of it, was missed on consecutive mammogram screenings. I know now that I had extremely dense breasts, this caused a masking effect – white on white.”

Breast Cancer Shaded Blue

Much of the criticism of BCAM centers on breast cancer campaigns which over-sexualize the disease, equating breasts with womanhood and femininity. Rod Ritchie, who was diagnosed with breast cancer in 2014, points out that “October is a bad time for male breast cancer survivors because the trivialization and sexualization of the disease by the pink charities reinforces public awareness that breast cancer is gender specific.  Since there’s little attempt to educate men that they need to be aware of symptoms too, we are diagnosed later and have a poorer prognosis.” 

Ritchie suggests “adding some blue to the pink, encouraging research on us, and screening those with a genetic propensity. Reminding the community that this is a genderless disease will give us a chance to receive an early diagnosis and therefore a better prognosis. We deserve equality.”

Metastatic Breast Cancer: The Other Side of BCAM

Learning about metastatic breast cancer (MBC, also called stage 4, secondary breast cancer (SBC) or advanced breast cancer) from online blogs and social media networks was revelatory for me. As Lisa de Ferrari points out, “although breast cancer has been commercialized and is often presented in a way that seems to minimize the seriousness of the disease, the reality is that deaths from this disease remain extremely high.”

MBC has been referred to as a story half-told, the other side of BCAM we don’t hear enough about. “Every Breast Cancer Awareness Month the huge focus is on awareness of primary disease. There has been little focus on secondary breast cancer and the only day for awareness is 13th October,“ points out Jo Taylor. “Awareness of SBC needs to be across the whole month.”

Nancy Stordahl is unequivocal in her criticism of the failure each October to adequately raise awareness of MBC. “Despite all the pink, all the races, all the pink ribbons, most people still know little or nothing about metastatic breast cancer,” she writes. “No wonder so many with metastatic breast cancer feel left out, isolated, alone and yes, even erased.”

How To Honor All Sides of the BCAM Coin

This article is not meant in any way as a criticism of those for whom wearing a pink ribbon is  meaningful. I  am grateful that the original pink ribbon movement has brought breast cancer out of the dark ages when it was taboo to even mention the words “breast cancer” aloud.  However, time has moved on, and it is time to challenge the singular narrative of breast cancer as a female only disease wrapped up prettily in a pink ribbon. 

So to quote, Gayle A. Sulik, a medical sociologist, and author of Pink Ribbon Blues,  “this is not a condemnation of anyone who finds meaning in the ribbon or public events. It is a call to broaden the discussion, re-orient the cause toward prevention and life-saving research, and acknowledge the unintended consequences of commercialization, festive awareness activities, and the lack of evidence-based information that makes its way to the public.”

It’s important to honor your feelings and emotions at this time. If you want to celebrate BCAM, celebrate; if you want to sit out this month or use it as an opportunity to educate others in a different way, then do that. In the words of Rowe, “Everyone gets to experience BCAM the way in which they need and want to.”

However, I will add to this that whichever way you choose to honor this month, be more questioning. As MBC patient advocate Abigail Johnston says, “ask if the pink ribbon represents the community you are trying to reach before using it automatically. Be open to understanding that not everyone identifies with the same images and concepts.”

Perhaps consider wearing the more inclusive green and teal ribbon designed by METAvivor. To highlight the uniqueness of the disease and show its commonality with other stage 4 cancers, METAvivor designed a base ribbon of green and teal to represent metastasis. “Green represents the triumph of spring over winter, life over death, and symbolizes renewal, hope, and immortality while teal symbolizes healing and spirituality. The thin pink ribbon overlay signifies that the metastatic cancer originated in the breast.”

Also use this month as an opportunity to broaden your understanding of breast cancer awareness. In the words of Terri Coutee, founder of DiepCFoundation,  “Without the metastatic community, I cannot understand, learn, or appreciate their experience of living with breast cancer. The men in the breast cancer space who are living with or have been treated with this disease have amplified their voices over the years to level the breast cancer awareness campaign to let us all know, breast cancer does not discriminate.”

Above all, don’t let breast cancer awareness in all its many shades be for one month alone. “When I began my advocacy, I hopped on the October bandwagon to bring awareness to a disease that has affected me, my own family, and dear friends too often, “ says Terri. “ Now, I look at it as only one month out of a year we need to bring awareness to latest studies in oncology, clinical trials, surgical best practices, emotional recovery, support, all mixed in with a bit of gratitude for the friends I’ve made along the way and to mourn those I have lost.”

Patient Empowerment Revisited: Part 2

Welcome back to the second part of this discussion on patient empowerment. In Part 1 we looked at self-advocacy and the importance of having access to information which allows us to take a more active role in our care. We also looked at how a team-based, partnership approach to care – one in which the patient is respected as a person – facilitates a more empowering environment. 

In Part 2, we’ll look at the role of peer to empowerment and explore whether the term “empowerment” is even the right term to use. Finally, we’ll conclude with some thoughts on the need for systemic change and a shared vision to embed new solutions into healthcare systems and pathways.

Theme 5. Peer to peer empowerment

“Engagement with your community, bolsters our confidence with good information.” – Britt (@mewhinney). 

Information, knowledge and the confidence to become a more active participant in our care also develops from engagement with other patients.  As Conor describes it, “I find being part of patient groups empowering for so many things, including where to find information, other peoples experiences and above all, chatting with others who just understand.” 

Piarella Peralta de Wesseling (@piarellaperalta), Patient Advocacy Lead at Diaceutics, is unequivocal in her belief in the collective wisdom and power of patient communities. “It is not clinicians nor industry nor government who have empowered me as greatly as the community of empowered individuals themselves,” she says. “No one has greater urgency to get it right, to evaluate and decide what best fits our lives than us facing the very challenges of the disease. People come to me and my fellow patient advocates to ask very simple questions that in the end just have two purposes, feeling heard, share in the knowledge of the devastating news that they have learned they have cancer, be in solidarity and then to know how they can make the best decisions relevant to them.”

Theme 6. Is ‘empowerment’ the right term to use?

When crowdsourcing these comments, I received some push-back on the use of the term ‘empowerment.’  To quote Piarella, the term itself “creates a sense of power differential and that is perhaps intuitively contradictory to the notion that each human has a right to be autonomous and self-determined.”

Kristie Konsoer (@kkbadger1) agrees. “For me, empowerment means taking action/speaking up so I feel like I’m participating in and influencing my health care,” she explains. “I empower myself. Empowerment comes from within. An authority can’t give it to me, but we can work together toward the same goals.”

Here are some more quotes expressing similar viewpoints. 

“For what it’s worth I think patient empowerment is lacking. It implies patients need authority given to them by another. Patient rights seem more fitting. Patients have rights, and doctors and healthcare providers must ensure those are not infringed but are guaranteed.” Mark Samber (@MarkMyWords67).

“I cringe at the term! Despite its well-meaning origins, it’s a conversation stopper within our hierarchy of medicine.” – Carolyn Thomas (@heartsisters).

“Empowerment is a convenient shorthand that smacks of condescension, as if someone is deigning to award me some of their power when I presumably have little or none. How about respecting patients and taking our input seriously. We can strengthen our own power by exercising it.” – Nancy Seibel (@nancylseibel).

“Like everything, thoughts on this evolve. #Patientsinvolved means patients can be as passive or pro-active as they like, but it also means they are heard and asked about their thoughts and needs. Empowerment perhaps is self-empowerment. Not that patients are ‘given power’?” Sharon Thompson (@sharontwriter).

“I think patients like to ‘feel’ empowered, because the word connotes being engaged, participatory and pro-active. At the same time it can be overused, although when people say they’re empowered by ‘xyz’, there’s ‘power’ in that.” – Cathy Leman (@dammadbrstcancr).

“Patient empowerment is a concept I believe in, but as a patient activist, I find the term somewhat passive. I’m also concerned that power is not something men diagnosed with breast cancer feel they have. Faced with a labyrinth of medical institutions and pink charities geared towards dealing with this predominantly female disease, those of us in the one percent cohort feel virtually powerless.” – Rod Ritchie (@malefitness).

“Not a big fan of the term because what exactly does it even mean? Empowered vs powerless, or what? Also, what empowers each of us varies so much as we are all unique. It’s another trendy buzz word. But if it works for some, that’s fine too.” – Nancy Stordahl (@nancyspoint).

“I use the word ‘empower’ in my mission statement but only believe it is worthy of a mission statement or used anytime when ACTION is taken. A word is empty without the tools/resources to use it.” – Terri Coutee (@6state).

Theme 7. Empowerment requires a systemic approach

The final theme centered around the need for a systemic shift in how patients are treated in the healthcare system.  As Julia (@bccww) put it, “empowerment would be health care services being appropriately funded and accessible to enable those with serious/long term chronic conditions to live well. It’s about being enabled (for me) to manage my long term health conditions, live well with them but with access to support and/or treatment (if I need it) to keep on course.”

Elizabeth Nade (@elizabethnade11), who prefers the term “patient activism”, points out, “I am already empowered. I am seeking change to the current healthcare model because it is insensitive and unresponsive to the needs of patients and their families. I want to challenge the relationship to affect change.”

Similarly, Patty Spears (@paspeers88), emphasises the need for systemic change. “I don’t like the term and how it’s usually used. Even unempowered patients need good quality care, not just empowered patients.  Rather let’s ensure equal and high quality care for ALL patients. Putting the burden on the patient (to be empowered) is a bad idea in my book.”

Cardiologist, David Lee Scher MD (@dlschermd), adds the physician voice to the discussion. “Education, awareness and tools are what is needed for patients to self-manage chronic diseases and navigate the healthcare system,” he says. “What you call it doesn’t matter. Labels and phrases (engagement, etc) in healthcare have yet to translate to better care.”

A Shared Vision

To conclude this discussion, I’m turning to Liz Ashall Payne (LizAshallPayne), CEO and Co-Founder @OrchaHealth, a passionate advocate for healthcare  transformation through digital and mhealth.  I  really like what she has to say about working together on a shared vision that puts the patient at the center of the entire healthcare ecosystem. 

“To truly support ‘patient empowerment’ we have to think far broader than the patient, we must also make sure we are empowering those that sit around the patient. 

We need to empower Health Care systems to be incentivised to support this vital work.

We must educate and empower our health care workforce to know how to empower patients 

We must support innovators to know what patients’ needs are, and how to embed new solutions into healthcare systems and pathways.

Above all we must COLLABORATE with a shared vision. 

The current COVID crisis has really brought the whole system together to drive digital uptake amongst our patients and populations, but we are not finished, we must do more, and there has never been a better time to do so.”

Patient Empowerment Revisited: What Does It Truly Mean To Patients?

Language is constantly evolving in our everyday lives. This is also true of the language we use to describe patienthood. The words we use color how we view our world and how the world perceives us as patients. 

‘Empowerment’ is one of those words frequently attached to patients.  The term is most often used to emphasize the value of having patients assert greater control over their health care.

In a previous post, I set out to explore what it means to be an empowered patient from the perspective of patients themselves. I outlined seven essential facilitators of patient empowerment, from access to information, to health and digital literacy.  Now, two years later, I want to revisit the theme of patient empowerment to investigate what, if anything, has changed in the interim. 

Is patient empowerment still a concept that resonates with patients? 

Reaching out to my online network of patient advocates I received an overwhelming response to this question.  The following quotes, which I’ve synthesised around the most common themes, demonstrate a rich source of insight. Some of the responses you may find surprising as they offer a new perspective on the evolving nature of what it is to be a patient in today’s connected world. Others I feel sure will resonate. Take some time to reflect on what it means to you to be engaged, empowered and enabled in your own care and that of your loved ones. As always feel free to share your thoughts on this topic with the wider community via PEN’s social media channels. 

7 Themes Related To Patient Empowerment

  1. Agency, self advocacy and control
  2. Information, choices and shared decision making
  3. Partnership and a team based approach to patient care
  4. Respect, understanding and compassion
  5. Peer to peer empowerment
  6. Is ‘empowerment’ the right term to use?
  7. Empowerment requires a systemic approach

As there is so much to cover across this topic I’ve split the discussion into two parts. In this first part we will look at Themes 1 – 4. 

Theme 1. Agency, self advocacy and control

On your health journey, care is the vehicle – why not take the wheel?” – Darren Myles (@DRMJunior).

The first theme to emerge centers around a sense of self-advocacy and taking ownership of our own care. Certified Cancer Coach and Executive Director of Emerald Heart Cancer Foundation, Elyn Jacobs (@elynjacobs) considers empowerment as something that is “essential to successfully navigate the cancer journey. As an empowered individual, you can take the path of action and self-advocacy.”

Laurie Reed (@lreedsbooks) also believes being “empowered means recognizing that you have the ability and the right to act on your own behalf. Empowered means taking ownership of the power to effect change for your health and how healthcare is delivered.”

Brain Cancer Babe (@braincancerbabe) sees empowerment “ as taking control for yourself and of yourself.”

Liz Johnson (@wired4story) who calls herself “a career soldier of cancer”,  views the ability to “have some control in dealing with a disease that is completely beyond my control” as essential to her survival. “I’m the coach of my healthcare team (and policy makers and researchers) And all that goes into my survival,” she says. 

Lily Collison (@lilycollison), the mother of a son with Cerebral Palsy (CP), says that taking a more active role in the management of their condition, pushes patients beyond “being recipients of care.” 

Doing so is a proactive move, a term favoured by two-times breast cancer survivor, Georgina Tankard (@flowersorcakes) and Victoria (@terrortoria), founder of the Younger Breast Cancer Network (@YBCN_UK). 

“In the past, perhaps patients were expected to do as they were told. Nowadays with so many more options and so much information, patients can reasonably play a key role in decisions regarding their care,“ points out MS patient, Conor Kerley (@conorkerley). 

Theme 2. Information, choices and shared decision making

“Empowerment is having choices and being seen as the human at the centre of your care.” – Julia (@BCCWW).

Choice emerges as another central theme related to agency and control.  “Choice gives us that feeling of empowerment, “ says Elyn Jacobs, “it allows us to regain the much-needed control we somehow lost when we heard “You have cancer.” If you do not know your options, you do not have any. Empowerment comes from knowing your options, and obtaining the necessary information is critical to make the right choices for you, and for your cancer.”

As Elyn highlights, choice is informed by access to good, reliable information. In the words of cancer patient, Chris Lewis (@christheeagle1) “I need the information so that I can make informed judgments about my life.” 

How can patients be empowered if they don’t understand their condition?” asks Lily, who was amazed to read that a “2016 survey of 1,214 parents and caregivers of children with CP found that they judged available medical information to be inadequate to guide their decision-making. Another piece of research found that the greatest area of unmet need reported by young adults with CP was information.”

Having knowledge is one thing, but it’s the ability to act upon that information that is a key driver of empowerment. To quote Conor, “knowledge is power but only if that knowledge is acted upon.” 

For that to happen, the right environment needs to be facilitated around the patient. This leads us onto our next theme. 

Theme 3. Partnership and a team based approach to patient care

“Whether it’s called empowerment or involvement, the patient needs to feel they are part of the team”  – Noreen (@hiberniaroots).

Many spoke about the importance of a team-based, partnership approach to their care. As Stage IV TNBC patient advocate, Janice Cowden (@JaniceTNBCmets) explains, “I feel empowered through knowledge about my disease, as well as experiencing a team approach, or partnership, with my oncologist in planning my care.”

For caregiver, Wendy Morton (@wendyjanemorton) it’s important that “there is a partnership between ourselves and the care team. Also a genuine adherence to shared and thoughtful decision-making.”

In this team-based approach, patients still rely on their healthcare providers to actively engage with them.   “It’s still very much up to our doctors to let us know what types of options are out there and include us in decisions about how to get there,” emphasizes metastatic breast cancer patient, Meredith Kuiik  (@MeredithKulik).

For Susan Rudick (@susanruddick1), “the word isn’t as important as the patient being engaged and knowledgeable and most importantly being an integral member of the healthcare team when possible.”

Theme 4. Respect, understanding and compassion

“As a patient it’s a matter of LISTENING to us. Our voices are the power we have. What’s wrong doesn’t always show up in a diagnostic test or a scan. It’s our entire self – physical, emotional, psychological and the voice of the patient  is our empowerment” – Ilene Kaminsky (@ilenealizah).

Achieving this approach requires a willingness on the part of healthcare providers to create a space in which patients can ask questions and feel they are being heard on a human level.

In the words of breast cancer survivor Jen Douglas (@MMEJendouglas), it’s not just about understanding the diagnosis, but also having the opportunity “to ask questions and having providers who will take my concerns seriously.”

Metastatic breast cancer patient, Keillie (@LehrKellie) agrees. “Patient empowerment means I can ask questions to my oncologist and she will listen and discuss what I am asking. When I tell her of a side effect, she believes me even if it is not on the list of top side effects of that chemotherapy drug.”

Nancy Seibel (@nancylseibel) sums it up by saying, “I think it’s about respect, dignity and compassion on the part of healthcare professionals and patients. I can’t express in a single tweet how routine hospital and medical practices can humiliate and challenge one’s sense of self as a human worthy of respect.”  

As Elyn points out, “empowerment is hindered when a doctor does not respect the patient’s right to be part of the decision making or instills fear to obtain compliance. You are not just a patient, someone who is expected to passively accept the treatment plan being offered; you are a person, a person with choices.”

Being respected in this way has a circular effect, as Conor demonstrates by saying, “Personally, I believe that as I educated myself and became more empowered, that the attitude of my healthcare team towards me as a young adult changed and I was given more respect. This led to more shared decisions regarding my care and in turn led to me becoming more confident and feeling more empowered!”

It’s important to remember, in the words of Victoria, that “not every patient is the same and clinicians should adapt depending on an individual’s needs.” Patient advocate Barbara Jacoby (@letlifehappen) cautions that we mustn’t forget the cohort of patients who lack the knowledge and skills to become more informed in their care.  “I believe that it then becomes incumbent upon the medical team members to take the time to share with the patient and their caregiver, or other trusted person who can accompany them to their appointments, to explain proposed treatments and options and why such a course is considered to be the best for this individual person,” says Barbara. “Even if the person does not seem to want to be vested in their own decisions, the respect that the patient is given by the doctor builds a level of trust and confidence. This allows the patient to understand that they really matter and are seen as something more than another disease that needs to be treated. Knowing that you matter as a person will enhance the doctor/patient relationship and this automatically empowers the person to want to do their best.”

To conclude Part 1 of this discussion on patient empowerment I want to leave the final word to cancer patient advocate (@GraceCordovano).

Patient empowerment is often framed in the context of:

  1. Activating an individual patient, to essentially change their behavior to better themselves
  2. The doctor-patient relationship, with specific actions that could be done or incorporated to strengthen the interactions, trust, and clinical encounters.

A person’s health and pursuit of their best life with a diagnosis is so much bigger than these 2 traditionally referenced settings. Patients need to also be best supported to hack the health care ecosystem, to navigate its many silos and fragmented workflows, and to exceed the barriers that stand in the way of patients getting the care and resources they need to live their best life where they are.”

Join me for Part 2 of this discussion, where we will take a closer look at the role of peer-to-peer networks in building communities of information and support. I will also be asking if “empowerment” is an outdated concept.  Should we even be using the term in our discussions?   Join me for more answers to this question and further rich insights in Part 2. 

Quotation Inspiration: 10 Quotes to Inspire, Motivate and Uplift Cancer Patients

This month, I thought we could all do with a little quotation inspiration. When you’re dealing with cancer, some inspiring words can be just the thing to give you a daily lift.

Note this is not the same as saying that “thinking positive” is the best way to deal with cancer. While for some, a positive thinking mindset can help them cope, for many others, the tyrannical think positive brigade only makes us feel worse.

Thinking back on my own cancer experience, there were certain messages of hope and inspiration that I received which help bring some much-needed perspective to my situation.

So with the help of our community, I’ve compiled the following quotes and messages to inspire and uplift you today.


Julia (@juliabarnickle), turns to her own words of wisdom to get her through her various cancer experiences over the past twelve years. In particular this one: “Nothing in Life is worth worrying about.”

 

Nancy (@nancyspoint) also looks to her own words for motivation. “Be real. Be you. It’s enough,” she says.

 

Take a leaf out of Ilene’s (@ilenealizah) quotebook. “When inspiration moves to another neighborhood, I often reference poetry, especially Mary Oliver and Maya Angelou (And Still I Rise)” she says. “Yet I shiver in the cool winds of words whispered in history, my mind running wild as I open up my quotebook (notebook of quotes)‘ to add or to discover. I picked these randomly on purpose, and in no quantitative or qualitative importance of order:

 

“There is no greater agony than bearing an untold story inside you.” — Maya Angelou

 

“What lies behind us and what lies before us are tiny matters compared to what lies within us.” — Ralph Waldo Emerson

 

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.”— Martin Luther King Jr.

 

“The knack of flying is learning how to throw yourself at the ground and miss.” —Douglas Adams

 

Sarah (@he4dgirl) shares with us a three-word quote from CS Lewis – one that I have turned to often myself: “Courage, dear heart.”

 

Another one of my favorites is from the author, Cheryl Strayed, who writes: “The place of true healing is a fierce place. It’s a giant place. It’s a place of monstrous beauty and endless dark and glimmering light. And you have to work really, really, really hard to get there, but you can do it. You’re a woman who can travel that far.”

 

Finally take inspiration from Cancer biologist, Triona (@NiTriona) and pass on some encouragement to another person today. Triona shares these words from poet and philosopher, John O’Donohue (Eternal Echoes) to remind us of the gift that encouragement bestows.

 

“One of the most beautiful gifts in the world is the gift of encouragement. When someone encourages you, that person helps you over a threshold you might otherwise never have crossed on your own.”

Music as Medicine: The Healing Power of Music

The late neurologist, Oliver Sacks in his book “Musicophilia: Tales of Music and the Brain,” argued that music is essential to being human in ways that we’ve only begun to understand. Music stimulates the brain centers that register reward and pleasure, which is why listening to a favorite song can make you happy.  There is in fact no single musical center in the brain, but rather multiple brain networks that analyze music when it plays, thereby giving music the power to influence everything from our mood to memory.

For cancer patients, music can be a powerful therapeutic tool in coping with a cancer diagnosis and treatment.   “Music was so important to me, “says breast density and cancer patient advocate, Siobhan Feeney (@BreastDense), “because my concentration was so poor I really struggled with reading books and watching movies through chemo.  I walked a lot and plugged into lots of beautiful music along the way.”

The Evidence Base for Music Therapy

Music therapy (the clinical use of music as a tool to help achieve treatment goals) is an evidence-based practice that harnesses the power of music to improve quality of life in people dealing with illness.  References to music therapy in the clinical setting dates back to a series of letters, published in The Lancet, in 1891, which discussed the approach of a group of musicians providing live music to patients in London hospitals. [1] From that point, music therapy established itself as a recognized health profession in the clinical context.

Research findings have supported a wide range of music therapy benefits from changing brain waves to lowering heart rate and blood pressure.  While clinical trials, to date, have been small, the results are promising.   Music therapy has been shown to boost the effects of anti-nausea medications in patients receiving chemotherapy and reduce pain perception.

In a study of patients who underwent surgery for lung cancer, the patients who received music therapy before and after surgery, reported less pain and had lower blood pressure, heart rate and anxiety. In addition, the dose and frequency of pain medication given after the surgery was reduced in the group who received music therapy. [2]

In 2013, a small Turkish study of 40 people found that using music therapy and guided visual imagery greatly reduced anxiety levels for patients undergoing chemotherapy.[3] The patients also had less frequent and less severe nausea and vomiting. Similarly, a study, conducted in 2017, found that music therapy could help reduce anxiety in patients having radiotherapy simulation. [4]

The benefits of music therapy are not confined to the clinical setting.  You can tap into your own self-directed music therapy session anytime by simply listening to some favorite songs or pieces of music. If you’re looking for some inspiration, check out the following suggestions crowdsourced online.

Although I’ve categorized these music choices according to genre, take a tip from breast cancer survivor and classically trained professional harpist, Amy Camie, who challenged herself to listen consciously to her sons’ heavy metal music. In doing so, Amy discovered music “can be a profound step in the exploration of self, in the conscious act of honest reflection that goes by many names–mindfulness, meditation, self-discovery, self-empowerment, and enlightenment.” [5]

Music Playlist

Choirs

Both Blanca (@BlancaUsoz), who is caring for someone with cancer, and John (@walls2) choose a piece of music sung by their favorite choirs.  For Blanca, listening to Leioa Kantika – Nel Blu Dipinto Di Blu (D. Modugno), sung by the choir of her hometown, lifts her mood.   “Music has played a pivotal role in helping me live with a terminal diagnosis,” says John. “I’ve been privileged to have gotten to know the amazing @mountsionchoir, who sang “Don’t Give Up” by @andygrammer for me at #ChoirsForCancer. It’s now my anthem.”

Classical

Jennifer (@vitalfrequencies) opts for a classical piece from Beethoven; his opera Fidelio, or his 5th,  6th and 9th Symphonies being particular favorites.

Indie Pop

Sally (@sally_crowe) finds Christine and The Queens’ song “Tilted” to be uplifting.

Rock

While Chris (@christheeagle1), who says he “fell back in love with his music collection through cancer”, chooses “Under The Bridge” by Red Hot Chilli Peppers, Ronny (@RonnyAllan1) suggests Oasis, “Don’t Look Back In Anger”.

Both Eva (@EvaAlloza) and Teresa (@tbaupuig) recommend listening to Spanish rock band  Jarabe de Palo. Lead singer, Pau Dones, recently died from colon cancer, but his songs, say Eva, “are full of vital energy.”

Wrapping Up

Music is a universal language. It can open the doors to empathy and understanding. In the words of Camie,”In a world full of separation, anger, prejudice, fear, judgment, and pain, perhaps by expanding our familiar musical tastes we could slowly develop a listening ear for others who may not fit into our comfortable genres. Perhaps listening to music that expresses life experiences from different perspectives will naturally nurture more tolerance and empathy for our brothers and sisters around the globe.”


References

[1] Boyde C, Linden U, Boehm K, Ostermann T. The Use of Music Therapy During the Treatment of Cancer Patients: A Collection of Evidence. Glob Adv Health Med. 2012;1(5):24-29.

[2] Wang Y, Tang H, Guo Q, et al. Effects of Intravenous Patient-Controlled Sufentanil Analgesia and Music Therapy on Pain and Hemodynamics After Surgery for Lung Cancer: A Randomized Parallel Study. J Altern Complement Med. 2015;21(11):667-672.

[3] Karagozoglu S, Tekyasar F, Yilmaz FA. Effects of music therapy and guided visual imagery on chemotherapy-induced anxiety and nausea-vomiting. J Clin Nurs. 2013;22(1-2):39-50.

[4] Rossetti A, Chadha M, Torres BN, et al. The Impact of Music Therapy on Anxiety in Cancer Patients Undergoing Simulation for Radiation Therapy. Int J Radiat Oncol Biol Phys. 2017;99(1):103-110.

[5] https://upliftconnect.com/building-tolerance-and-empathy-through-music/