Posts

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) 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.

Shared Decision Making: Putting the Patient At The Center of Medical Care

“Tell me and I forget. Teach me and I remember. Involve me and I learn” – Benjamin Franklin

As gravity shifts away from health care providers as the sole keeper of medical information, the importance of sharing decisions, as opposed to clinicians making decisions on behalf of patients, has been increasingly recognized. Shared decision- making (SDM) is the conversation that happens between a patient and clinician to reach a healthcare choice together. Examples include decisions about surgery, medications, self-management, and screening and diagnostic tests. While the process commonly involves a clinician and patient, other members of the health care team or friends and family members may also be invited to participate. The clinician provides current, evidence-based information about treatment options, describing their risks and benefits; and the patient expresses his or her preferences and values. It is thus a communication approach that seeks to balance clinician expertise with patient preference.

Dr Mohsin Choudry describes shared decision-making as “a way of transforming the conversation between doctors and their patients so that the thoughts, concerns and especially the preferences of individuals are placed more equally alongside the clinician’s expertise, experience and skills.” Before physicians can really know what the proper treatment is for a patient, they must understand the particular needs of their patients. This approach recognizes that clinicians and patients bring different but equally important forms of expertise to the decision-making process. The clinician’s expertise is based on knowledge of the disease, likely prognosis, tests and treatment; patients are experts on how a disease impacts their daily life, and their values and preferences. For some medical decisions, there is one clearly superior treatment path (for example, acute appendicitis necessitates surgery); but for many decisions there is more than one option in which attendant risks and benefits need to be assessed. In these cases the patient’s own priorities are important in reaching a treatment decision. Patients may hold a view that one treatment option fits their lifestyle better than another. This view may be different from the clinician’s.  Shared decision-making recognises a patient’s right to make these decisions, ensuring they are fully informed about the options they face. In its definition of shared decision-making, the Informed Medical Decisions Foundation ,  a non-profit that promotes evidence-based shared decision-making, describes the model as “honoring both the provider’s expert knowledge and the patient’s right to be fully informed of all care options and the potential harms and benefits. This process provides patients with the support they need to make the best individualized care decisions, while allowing providers to feel confident in the care they prescribe.”

By explicitly recognizing a patient’s right to make decisions about their care, SDM can help ensure that care is truly patient-centered. In Making Shared Decision-Making A Reality: No Decision About Me Without Me, the authors recommend that shared decision-making in the context of a clinical consultation should:

  • support patients to articulate their understanding of their condition and of what they hope treatment (or self-management support) will achieve;
  • inform patients about their condition, about the treatment or support options available, and about the benefits and risks of each;
  • ensure that patients and clinicians arrive at a decision based on mutual understanding of this information;
  • record and implement the decision reached.Screen Shot 2015-10-29 at 4.43.27 AM

The most important attribute of patient-centered care is the active engagement of patients in decisions about their care.
“No decision about me, without me” can only be realised by involving patients fully in their own care, with decisions made in partnership with clinicians, rather than by clinicians alone. This has been endorsed by the Salzburg Statement on Shared Decision Making, authored by 58 representatives from 18 countries, which states that clinicians have an ethical imperative to share important decisions with patients. Clinical encounters should always include a two-way flow of information, allowing patients to ask questions, explain their circumstances and express their preferences. Clinicians must provide high quality information, tailored to the patient’s needs and they should allow patients sufficient time to consider their options. Similarly, in Shared Decision Making: A Model for Clinical Practice, the authors argue that achieving shared decision-making depends on building a good relationship in the clinical encounter so that patients, carers and clinicians work together, in equal partnership, to make decisions and agree a care plan. According to the Mayo Clinic Shared Decision Making National Resource Center, this model involves “developing a partnership based on empathy, exchanging information about the available options, deliberating while considering the potential consequences of each one, and making a decision by consensus.” Good communication can help to build rapport, respect and trust between patients and health professionals and it is especially important when decisions are being made about treatment.

Decision Aids

One of the most important requirements for decision-making is information. There are a number of tools available to support the process such as information sheets, DVDs, interactive websites, cates plots or options grids. Decision aids that are based on research evidence are designed to show information about different options and help patients reach an informed choice. The Mayo Clinic has been developing its own decision aids since 2005 and distributing them free of charge to other health care providers. For instance, Mayo’s Diabetes Medication Choice Decision Aid helps patients choose among the six medications commonly used to treat type-2 diabetes. Patients choose the issues that are most important to them, for example, blood sugar control or method of administration —and then work with their physicians to make comparisons among the drugs, based on the chosen criterion.

Discussing their options and preferences with health professionals enables patients to understand their choices better and feel they have made a decision which is right for them. Research studies have found that people who take part in decisions have better health outcomes (such as controlled high blood pressure) and are more likely to stick to a treatment plan, than those who do not.  A 2012 Cochrane review of 86 randomized trials found that patients who use decision aids improve their knowledge of their treatment options, have more accurate expectations of the potential benefits and risks, reach choices that accord with their values, and more actively participate in decision making. Instead of elective surgery, patients using decision aids opt for conservative options more often than those not using decision aids.

Barriers to Shared Decision-Making

Barriers to shared decision-making include poor communication, for example doctors using medical terminology which is incomprehensible to patients; lack of information and low health literacy levels. It is worth noting that not everyone wants to be involved in shared decision making with their doctors; and not every doctor wants to take the time. Some patients come from cultural backgrounds that lack a tradition of individuals making autonomous decisions. Some health professionals may think they are engaged in shared decision-making even when they are not.

Shared Decision-Making – An Ethical Imperative

With this proviso in mind, it is nevertheless clear that the tide is turning toward more active patient participation in decisions about health care. Research has shown that when patients know they have options for the best treatment, screening test, or diagnostic procedure, most of them will want to participate with their clinicians in making the choice. A systematic review of patient preferences for shared decision making indicates 71% of patients in studies after 2000 preferred sharing decision roles, compared to 50% of studies before 2000.  The most important reason for practising shared decision-making is that it is the right thing to do. The Salzburg Statement goes so far as to say it is an ethical imperative and failure to facilitate shared decision-making in the clinical encounter should be taken as evidence of poor quality care. Evidence for the benefits of shared decision-making is mounting. Providing patients with current, evidence-based information, relevant decision aids and giving them time to explore their options and work through their concerns, will help patients choose a treatment route which best suits their needs and preferences, and ultimately lead to better health outcomes for all.

Building A Digital Ladder Of Engagement

Building A Digital Ladder Of Engagement

In my previous articles, I have written about using social media to connect with other patients and advocates, communicate with health care professionals, and access information to help make more informed choices about our own and our loved ones’ care. I am a passionate believer in the transformative potential of social media in healthcare, but I am also aware that each of us has differing levels of digital skills. Whether you are taking your first steps on the ladder of digital engagement, or you have reached the top, digital literacy is an important skill in your patient empowerment toolkit.

This article is for those of you who want to climb further up the ladder to become more digitally savvy with social media. And for those of you who have already reached the top, before you click away from the article believing this isn’t for you, please stop a moment. Think back to when you took your first step on that ladder. Remember the day you sent your first tweet, wrote your first blog post or asked a question in a Facebook group? Were you encouraged and supported in taking the next step in digital engagement? Was it a steep learning curve? Or was there someone to reach out a hand to help you climb the next step? If we are to truly call ourselves patient advocates, isn’t part of our role to help bridge the digital divide for all patients? I want to encourage you to think about how we might work together to extend a helping hand to those patients and their carers who are just starting out online.

What is Digital Health Literacy?

Digital health literacy is the ability to use information and communication technologies to find, evaluate, create, and communicate health information. It builds upon a foundation of health literacy, which is the degree to which individuals have the capacity to access, understand and use information in ways that enhance health. Reading these two definitions, it becomes immediately clear that those who have limited skills in either area are at a critical disadvantage when it comes to managing their own and their family’s health. Giving people access to relevant health information – and support in using that information – will help individuals make more informed decisions about their health care. Increasingly access to information and support is to be found online.

First Steps

If you are new to patient advocacy what first steps should you take to get up to speed? A good place to start is by gaining a better understanding of what it means to be an empowered patient. The Patient Empowerment Network has recently teamed up with Intake.Me to bring you their ePatient courses. These virtual classrooms are designed to help patients take those first steps on the path of patient engagement and advocacy. Follow this link to take the first two classes and be sure to check in regularly for more classes.

App icons on white cloud with smart tablet and ladderWhen you are ready to take your next step on the digital ladder, it’s time to join a social media site. Social media encompasses social networking sites (such as Facebook, Twitter, LinkedIn), blogs, wikis, video and photo sharing sites (such as Flickr, Pinterest, Instagram, YouTube), social bookmarking sites (Reddit, Digg), online communities, and user-generated content sites. With so many channels to choose from it might seem overwhelming at first to know where to begin, but as with any new skill start small and you will build up your expertise with time. Facebook and Twitter are the two of the most popular channels for healthcare conversations. You may already have your own account on these platforms, but if you haven’t it is very easy to set one up. Simply go to www.facebook.com and https://twitter.com/signup to sign up. Both have helpful step-by-step instructions to guide you through the process and at any time you can simply click on the “Help” button if you get stuck.

Facebook

On Facebook you can connect with other patient advocates and join Facebook groups related to your disease or condition. Many organizations have a Facebook presence and by liking their Facebook page you can keep informed of their activities and find other patients to connect with. As Facebook is a public platform and everything you post there can be viewed by a public audience, it’s important to consider the level of privacy you are comfortable with. You can adjust your privacy settings in Facebook at any time so your posts are visible to an audience of your choosing; for example “friends only”; “friends of friends”; or “public”. If you decide to set up your own page or group for your cause, you can easily do this in Facebook. Visit www.facebook.com/pages/create for instructions.

Twitter

While Facebook groups and pages are useful resources for patients, Twitter takes the healthcare conversation to another level. Think of it as a digital town square. Here you have a greater mix of patients, physicians, healthcare professionals, medical researchers, and the public all coming together in one virtual space to discuss healthcare matters.

Your Twitter profile is the first place someone will look when they go to your profile. If they find only a default Twitter picture and no bio details, your advocacy credentials may be called into question. Complete your profile by adding your name, a picture, and some brief details about your advocacy work so people can learn more about you.  It’s a good idea to listen first before leaping into the Twitter fray. This is true for any new community, whether virtual or in real life. This way you can understand the normative interactions existing on the platform. You don’t even have to tweet to learn from Twitter; there is a lot to learn from just following the right people but your experience will be richer if you join in with others in their conversations. If you are not sure what you should tweet, try something simple like introducing yourself, @mention someone you already know on Twitter, or retweet (RT) something that will be helpful to your followers to get your first conversations started.

Find People To Follow On Twitter

Start by following the Twitter accounts of organizations and groups related to your disease or interest. Go to their website and click on the Twitter follow button if they have one. Twitter will also populate your account with suggestions of similar groups and individuals on Twitter. Pretty soon you will have built a list of relevant accounts to follow. It’s a good idea to organize these accounts into lists; e.g. “organizations”, “researchers”; “patient advocates”; “hospitals”. You can create your own lists or subscribe to lists created by others (here’s a list of patient advocates on Twitter which I created). Find people who can serve as online role models for you. If you are already a seasoned Twitter user, reach out to someone new and offer to mentor and guide them.

How To Find Health Related Conversations On Twitter

(1) Advanced Search

The easiest way to find conversations of interest is to click the native search facility at the top of your Twitter screen and enter your keyword – for example “diabetes”. You then have a further option of performing an Advanced Search. This allows you to narrow down your search using parameters such as specific keywords, language, people, location, and date range.

(2) Hashtags

A hashtag is simply a keyword preceded by the #symbol. Hashtags create a hyperlink which will bring up every public update tagged with the same hashtag keyword. To create a hashtag, simply place # before a word; e.g. #diabetes. Familiarize yourself with the relevant hashtags related to your topic of interest. Hashtags are a useful way to search for health related topics and organize conversations around a keyword topic.

(3) 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. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. This is also a useful resource to find Twitter users to follow. In addition you will find past transcripts of chats on the website so you can familiarize yourself with the chat and its norms before taking part.

When you are ready to join in a chat, login to your Twitter account at the specified time and search for the relevant # (e.g. #diabeteschat). You don’t have to tweet; you can just follow the conversation, especially if you are still getting used to tweet chats, but do introduce yourself and mention that you are new to the chat. Twitter chats can be quite fast-paced and you may feel as if you aren’t keeping up with every tweet. Don’t worry. You can always catch up at your own pace later by reading the chat transcript available after the chat has finished. You can also use a “chat-room” tool, such as TweetChat to help you focus solely on the chat – only tweets with the hashtag will appear on your screen so you can filter out any other twitter conversations not related to the chat.

(4) Conference Live-Tweeting

Twitter is fantastic for taking the content of conferences beyond the walls of a conference venue. It is becoming more popular for conference organizers and attendees to “live-tweet” sessions directly from the conference. You can follow along on Twitter using the conference hashtag. Many conferences register their hashtag with the Healthcare Hashtag Project or include the hashtag on their conference website.

These are just some of the many ways in which your patient advocacy can be enhanced through social media. If you have been hesitant or unsure where to start, I encourage you to take that first step by setting up an account on Twitter or Facebook. Don’t be afraid to reach out to others for help along the way.

A Rising Tide

The aphorism “a rising tide lifts all boats” was first used by President John F Kennedy in a speech to describe the idea that when an economy is performing well, all people will benefit from it. This wisdom can equally be applied to the empowered patient movement. One of the ways in which we lift each other up is through strengthening our connections online. So ask yourself, who will you lift up today?