The Power of Content Curation for Healthcare Communities

“Getting information off the Internet is like taking a drink from a fire hydrant” – Mitchell Kapor

Information is power and patients are becoming more empowered through increasing access to medical information online. However, one of the biggest challenges we face is trying to filter the vast repository of online content to find trustworthy content. As cancer research advocate and health blogger, Debra Madden (@AdvocateDebM), points out, “for better or worse, information is much more accessible today than it was in the late 1980s thanks to the Internet. But a major challenge now is separating the wheat from the chaff, being able to identify the many resources on the Internet that are not reliable and recognize those that are reputable sources of consistently high-quality medical and health information.”

Instead of more information what we really need is more accessible, understandable and credible information on which to base our healthcare decision-making. One solution is to curate reliable, up-to-date medical information in a format that is easy for patients to access, digest, and understand. 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. Beth Kanter, a specialist in social media communication for non-profit organizations, characterizes a content curator as someone “who offers high value to anyone looking for quality content because finding that information (and making sense of it) requires more and more time, attention and focus.”

Health science blogger, Lisa DeFerrari (@after20yrs), devotes time on her blog to sharing the latest research on breast cancer. “A lot of the inspiration for what I do on my blog, and a lot of what I’m learning too, comes from the people I meet in my advocacy work and online”, she says. “Many of us have an interest in knowing what’s going on in cancer research and understanding what kind of progress we’re making against this disease. I believe that being up to date about the major developments in research empowers us in taking care of our own and our loved ones’ health.” Lisa describes the activity as one in which she shares her own learning process with readers, “I felt that this was an area where I could contribute given my own experience with breast cancer and my advocacy work as well as my interest in research. I look for updates that seem interesting and relevant from a patient perspective and share what I see as the basic, need to know, details for my readers.”

Mayo Clinic-trained women’s heart health activist and heart attack survivor, Carolyn Thomas (@HeartSisters) was once described by cardiology conference organizers as a ‘knowledge translator’. “I love that job description,” she says, “I like trying to make sense of complex medical gobbledygook. There actually is a social science readability rating scale called “SMOG: a Simple Measure of GobbledyGook!” – one that most medical journals would fail, by the way.”

The ability to curate trusted content 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.” Not only is curation of value to the health community, but it also benefits the curator by enhancing their credibility and leadership among their peers. Amy, Carolyn, Lisa, and Debra are all leaders in this field. In interviewing each of them this month, I found they were eager to share their tips and recommendations on developing the skill of content curation. Listed below you will find a summary of their recommendations, alongside my own tips for effective content curation.

Eight Steps to Effective Content Curation

1.) Consider the source

Curate content from reliable and credible sources only. This is the most important first step in curating trustworthy content. Debra’s first step is to go directly to the small library of oncology texts she has built over the years (e.g., DeVita, Hellman, and Rosenberg’s Cancer Principles & Practices of Oncology, which is considered by many to be the definitive oncology reference). “However”, she says, “even if these texts weren’t available to me, there are multiple exceptional online resources that are easily accessible. These sites are available to anyone with access to an Internet connection, are typically free without subscription costs, and provide links to additional helpful sources of information and references on related topics.”

Debra recommends conducting online searches of medical journals published by professional cancer associations, including the American Society of Clinical Oncology (ASCO)Doctor analyzing human illness on laptop and the American Association for Cancer Research (AACR). She advises whenever possible, for research purposes, it’s best to obtain access to full-text journal articles versus solely the abstracts. Debra also recommends conducting an online PubMed search. PubMed comprises greater than 26 million biomedical literature citations from MedLine, which is the U.S. National Library of Medicine (NLM)’s bibliographic database. “PubMed provides free access to abstracts within Medline as well as links to full-text articles, importantly, in some cases, access to the full-text journal articles is also provided for free. Unfortunately, in other instances, although full journal articles can be accessed by linking from the abstract in PubMed, the publishers charge a fee for obtaining the full text, which can become extremely pricey.” Debra’s tip in such cases is to conduct a Google search on “full text medical journal articles free,” which will return sites that provide links to the increasing number of journals that provide free online full-text articles.

Her final recommendation is to conduct a Medscape search. “After a free, one-time, and simple registration process, Medscape provides access to professional, original medical content that includes comprehensive review articles, patient education articles, journal commentaries, expert columns, and medical news”, she says. “In addition, Medscape enables users to select their preferred specialty which then delivers a personalized site with topics of most interest.”

Amy recommends finding a go-to source for credible information. “My go to patient advocate for the latest hereditary cancer/BRCA research is Lisa M. Guzzardi, RN (@LguzzardiM)”, she says. “Lisa is a HBOC (Hereditary Breast & Ovarian Cancer) patient advocate dedicated to providing up to date evidence based research for consumers at risk and also clinicians. She is on top of all the latest scientific journals and research pertaining to HBOC.”

2.) Subscribe to newsletters and alerts

Lisa told me that she relies on a number of sources that she tracks for the latest articles and reports about cancer research developments, including medical news aggregators, cancer research news subscription services and google alerts. “I scan these regularly”, she says, “looking for those stories that seem to have the most potential interest or impact from the patient perspective.”

Set up Google Alerts for the healthcare topics of interest to your community. Add Google Scholar which indexes most peer-reviewed online journals of Europe and America’s largest scholarly publishers. You can also use tools such as Flipboard and Newsle and subscribe to other health-related curators on Scoop.it a curation platform.

3.) Learn how to read behind the headlines

Every day we read headlines heralding medical breakthroughs, and it’s important to know how to discern the true reality behind the headlines. Does the news item support its claims with scientific research? If so, read through the article to find the most important findings from the study. Look for expert commentary from physicians or other qualified healthcare commentators within the article. Note if the author mentions any limitations concerning the research (again they often don’t). Most peer-reviewed articles list their research’s limitations in their conclusion, so you may need to dig deeper by reading the original published journal article. Debra cautions that “the facts are not always convenient, and those who speak out in the popular media may have an agenda or bias. Unfortunately, the reality is that when discussing health and medical research, screening, interventions, etc., many news stories tend to emphasize and often exaggerate potential benefits while minimizing or even ignoring possible harms. In addition, it’s important to recognize the different types of bias that may also impact how research is designed and implemented, how data is collected and analyzed, and/or how or whether results of such research are presented in the medical literature. Understanding potential research bias and how it may impact study results and its reporting enables advocates to critically review scientific literature, an important skill in evaluating and accurately presenting the evidence.”

4.) Cite the original source

Always cite the original source when curating content. Read Citing Medicine: The NLM Style Guide for Authors, Editors, and Publishers to learn more about how to publish citations.

5.) Provide context and add perspective

Content curation is not about collecting links or being an information pack rat; it’s about being able to summarize the key points, adding your own perspective and putting things into a context that makes sense to your community. Carolyn describes the process as “a combination of my own personal experience or opinion juxtaposed with what others before me have learned about this topic. What have researchers in the field found? What do physicians’ current treatment guidelines recommend? Or, how have other patients experienced what I’m talking about?” She points out, “I’m not a scientist, but I can now interpret a journal abstract pretty well and distil the key points in a simple, clear fashion. I never write things like “Studies suggest that…” without actually citing a credible reference for a study or two that support what I’m about to say.  And I look specifically for methodology issues (No women included in this study? Or only lab mice? – not interested!)”

6.) Publish to a content hub

You can post your curated content to a blog or you can use a content hub, as I do, such as Scoop-it. Creating a content hub is another opportunity to build a community of shared interest and amplify your content.

7.) Use the right tools

Some useful tools include Pocket, which integrates with 500+ apps for easy curation, Evernote, a cross-platform, freemium app designed for note taking, organizing, and archiving, and news aggregator app, Feedly.

8.) Tap into the power of social media

Share your curated content via your social networks and make it easy for others to share it too. Add a relevant hashtag and use a twitter scheduling tool like Buffer and Hootsuite to schedule tweets so that you can reach a global audience.

Final Thoughts

As you can see from these examples content curation is an important skill for patient advocates. Amy believes, “being well versed in the science of your own health story plus the ethical implications, philosophical implications, and emotional components of your health story is key to being a credible patient advocate.” To develop these skills, Debra recommends the scientific training and educational opportunities offered by nonprofit organizations such as the National Breast Cancer Coalition (NBCC)’s Project LEAD®, the Research Advocacy Network (RAN), and the Cancer Information & Support Network (CISN); as well as conference-based educational opportunities, such as through the RAN’s Focus on Research Scholar Program, which culminates with attendance at ASCO’s Annual Meeting; the Alamo Breast Cancer Foundation’s Advocate Program as a component of the Annual International San Antonio Breast Cancer Symposium (SABCS); and the Drug Information Association (DIA) Patient Fellowship Program.

I leave the final word to Lisa, who says that “as patient advocates we bring a different perspective to the discussion.” That perspective is an important one, and learning how to do it well is a way to add inestimable value to our communities.


Editor’s Note: For a comprehensive list of the Best App-Making Software, please click here.

Getting a Grip on Anxiety While Fighting Lung Cancer

Panel Interview with Susan Varghese, RN, MSN at MD Anderson, Dr. Rebecca Suk Heist, MD, MPH at Massachusetts General Hospital Cancer Center, Dr. George Simon, MD, FACP, FCCP at MD Anderson, and Melinda Dunn, Stage IV Lung Cancer Survivor, Patient Advocate

At the LUNGevity Live Town Meeting at MD Anderson Cancer Center in March 2016, Andrew Schorr interviews the panel about understanding anxiety, depression, and the statistics of lung cancer. Susan Varghese begins by explaining that by patients talking and asking their healthcare team for help allows them to understand and then prescribe the appropriate care for them. Dr. Heist and Dr. Simon caution patients to interpret statistics with care because the are only averages, and not specifically about you. Every case and person are different. Melinda adds to that by saying she overcame her cancer by refusing to believe the statistics because “it’s not me, Melinda, it’s some group.”

Watch the full video below to hear all about anxiety and statistics from four lung cancer experts.

Getting a Grip on Anxiety While Fighting Lung Cancer from Patient Empowerment Network on Vimeo.

Stay On Top Of Your Health – With The Help Of a Smartphone App

After visiting the doctor, you are usually on your own. You are responsible for taking your meds on a regular basis and for keeping track of your symptoms. This can be challenging in everyday life – especially when you need to take more than one pill per day. According to a study by the World Health Organization 50% of all prescribed meds are either taken incorrectly or aren’t taken at all. But non-compliance can be fatal: in the US about 125,000 people die annually because of not following the doctor’s prescription[1]. This is why it’s so important to take your meds as prescribed and to keep track of your vitals and symptoms. But it’s also just as important to take over the reins when it comes to your health. Because it’s your body and your health you need to stay on top of it. I would like to introduce you to a smartphone app that can simplify how you manage your health – a digital assistant that helps you to stick to your treatment plan: MyTherapy.

[1] http://www.medscape.com/viewarticle/818850

MyTherapy_Reminder

I know exactly what you think: “Wow, just another pill reminder.” But MyTherapy is much more than that. MyTherapy is a health app that reminds you to take your meds, check your vitals and to get active. In short: with MyTherapy you have your whole therapy in one app. Therefore, the app translates your therapy into a simple to do list and motivates you to check off your tasks and to empty the list. The integrated scanner makes it easy to find your meds by scanning the barcode on your medication package.MyTherapy_Scanner

The built-in health report allows you to stay on top of your vitals. You can print your report and share it with your doctor. This is a great way for you to take your health into your own hands.

MyTherapy_Graph

MyTherapy is made in Germany and strictly protects your privacy: you can use the app without subscribing and your personal data won’t be shared with third parties. MyTherapy is free of charge and can be downloaded on the Google Play Store and App Store. The app is available in English, German, Spanish, French and Italian. Further, MyTherapy is developed in cooperation with patients and established doctors. They all work together to constantly improve the app. Several studies – among others with Germany’s largest university hospital Charité Berlin – confirm MyTherapy’s positive impact on medication adherence and its outstanding usability for patients of all age groups.

What Supportive Care Drugs Help with Weight Loss in Lung Cancer?

Interview with Susan Varghese, RN, MSN and Dr. George Simon, MD, FACP, FCCP at MD Anderson Cancer Center

In this interview at the Lung Cancer Town Meeting at MD Anderson Cancer Center in March 2016, Andrew Schorr asks Susan and Dr. Simon about the side effects associated with lung cancer treatment, especially weight loss. Susan talks about an herbal drug that she uses and shows great results for her patients. Dr. Simon then talks about an anti-cachexia drug.

Watch the full video below to here all about supportive care from two lung cancer experts.

What Supportive Care Drugs Help with Weight Loss in Lung Cancer? from Patient Empowerment Network on Vimeo.

Finding Support For Prostate Cancer

Interview with Jim Schraidt, Patient Advocate, and Chuck Strand, CEO of Us TOO International

Andrew Schorr interviews Jim Schraidt and Chuck Strand about the importance of finding support for prostate cancer. Jim explains how he fell into a depression from treatment side effects, but by finding a support group through Us TOO he was able to diffuse his anger and learn methods of coping from other men going through the same thing. Us TOO International provides educational and support resources for the prostate community with peer-to-peer and online support groups. Both men agree that with support comes empowerment and the knowledge to take back control of your life.

Finding Support For Prostate Cancer from Patient Empowerment Network on Vimeo.

Living with Breast Cancer – A Patient’s Treatment Diary

Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a diagnosis is important. Connecting you to those who can relate and provide support is what we do.

Today I turn 42….not up for celebrating at all…but grateful for the loving and warm messages from friends and loved ones around the world and from home. Grateful hubby and my mom are here with me.

Had a bout of feeling sick this morning and had to cancel my appointments. Feeling better now…hope it was just nerves and nothing else…as need to be STRONG and ready for Round 2 chemo this Saturday.
I think it should be better this time as I know what to expect in some of the side effects from Round 1 and feeling physically stronger and wounds are healing better.

I’m newly married – 1+ years. Diagnosed with breast cancer end of May and underwent a right Apr TD BCmastectomy multifocal tumor, with removal of 21 lymph nodes. I had an immediate reconstruction with TRAM flap procedure on June 13 and started AC chemo July 26. 12 weeks – every 3 weeks cycle. 6 months of chemo in total: AC and Taxol + Herceptin (weekly for 12 weeks after AC). Then Radiation daily for 5 weeks + 5 years of Hormone Therapy. My sister found this site for me as she realized that I have had limited contact with support groups here in Hong Kong due to limited English speaking groups. I am from Canada, lived in Dubai the last 5 years where I had met my hubby and we moved to Hong Kong a year ago.

I have been thriving on the words of those who can relate to my experience, well wishes and positive outlook! I just had a Reiki, Osteopath session and physiotherapy today. Needed it! Think my nerves are a bit shot….thinking I wasn’t nervous but likely am in anticipation of my next doctor’s appointment and review of how I am doing. I’ve found meditating helps a great deal and my Reiki master suggested I meditate for a few minutes every day for 21 days….This continues to be a journey for myself and self-healing.

Fast forward a few months….

I have finally finished CHEMO!! YAY! And have now started Herceptin every 3 weeks for 8 more months and Tamoxifen for 5 years. Radiotherapy started today and it will be daily for 5 weeks. Was quite stressful…and arms got numb and sore.

Life is closer to normal that it has been for quite some time and I’m able to travel and enjoy a few pleasures. My visit to Phuket was good and much needed quality time with hubby. Last week I was at the Farm – San Benito in the Philippines for a wellness program. So good for my body and healing.  I’m officially a survivor and I hope to share with you, learn about your experiences, your advices, tips and laughter! Love and light

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Helping to Manage Side Effects in Lung Cancer Treatment

Interview with Susan Varghese, RN, MSN at MD Anderson Cancer Center

Andrew Schorr interviews Susan Varghese, a 10-year nurse practitioner veteran with lung cancer patients, about the side effects associated with treatment. She begins by explaining some of the common side effects, like the ones listed here:

  • Fatigue
  • Change in appetite
  • Nausea
  • Vomiting
  • Diarrhea
  • Constipation

Initially, she suggests managing your side effects with over the counter drugs, but if that does not work there are several new drugs available. These drugs can be administered before, during, and even after treatments. The main goal is to keep a healthy, nutritious diet and maintain your weight so you have the strength to fight your disease. And remember, communication with your medical team is key to getting the care you need. Watch the video below to hear all of Susan’s knowledge and advice.

Helping to Manage Side Effects in Lung Cancer Treatment from Patient Empowerment Network on Vimeo.

Clinical Trials: Building on What We Know and What We Can Achieve

Interview with Dr. George Simon, MD, FACP, FCCP at MD Anderson and Dr. Rebecca Suk Heist, MD, MPH at Massachusetts General Hospital Cancer Center

At the LUNGevity Live Lung Cancer Town Meeting, Andrew Schorr interviews Dr. Simon and Dr. Heist about clinical trials. Dr. Simon explains how clinical trials can give you access to tomorrow’s medicine today. For example, Bevacizumab was first introduced in a clinical trial in 1999, but did not get approved or become standard of care until 2006/2007. Next. Dr. Heist explains how the phases of clinical trials.

  • Phase 1: Testing to find the right dosage in people
  • Phase 2: Once the recommended dose is know, testing is done to find out the real response rate and real efficacy in people
  • Phase 3: Once the dose and results are known, a randomized study is done to compare it to the standard of care to see if it really is better

Watch the full video below to hear all about clinical trials from two lung cancer experts.

Clinical Trials: Building on What We Know and What We Can Achieve from Patient Empowerment Network on Vimeo.