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Archive for the ‘Patient Engagement’ Category

Know Your Chances:  Understanding Health Statistics Book Discussion

Monday, October 5th, 2015

[Guest post by Margot Malachowski]

In March 2014, the Healthy Communities COI hosted a webinar entitled “Know Your Chances: How to Become a Better Consumer of Health Statistics”.

The webinar was led by Steven Woloshin, MD, MS and Lisa Schwartz, MD, MS, authors of Know Your Chances:  Understanding Health Statistics. This lively book aims to promote a healthy skepticism of touted health claims, and supports consumer decision-making by demonstrating easy ways to look at health statistics.  After the webinar, the Healthy Communities COI developed the Health Statistics Book Discussion Project for librarians. The project ran from June 2014- May 2015. Our idea was to support librarians who wanted to use Know Your Chances to spark conversations in their communities. Twelve librarians participated in this project. Book discussions were offered for a variety of audiences, including a public library book group; a support group meeting; a professional development meeting for librarians; a professional development event for medical interpreters; and a class for seniors.

In collaboration with the NN/LM OERC (Outreach Evaluation Resource Center) , the Health Statistics Book Discussion Project developed a post-survey for discussion participants and a host-survey to send to the sponsoring institutions.  Results showed that participants and the host organizations benefitted from the book discussions.  Fifty-five participants completed the post-survey and six hosts completed the host-survey.

When asked, “will you do anything differently after reading the book”, 67% of participants replied yes.  When asked “if yes, what will you do differently?”, most participants shared that they would be more critical and skeptical about study results.  At several of the book discussions, participants were asked to write their take-away on a post-it note.  One participant stated that “numbers are useless without understanding their full context.”

When asked, “Did attending the discussion add to your understanding of the book?”, 47 out of 55 participants responded “yes,” 7 out of 55 participants responded “not sure,” and 1 participants responded “no.”  Response to “If yes, how?” included:

  • Listening to the comments of other participants added to my own understanding of the book.
  • A clearer understanding of the pros and cons and how to weigh them out for your own personal situation.
  • The book was a lot to digest, so good to discuss.  Handouts valuable and information concerning online sites and hospital librarian valuable, too.

All hosts thought the book discussion benefited their community and agreed that it contributed to their organization’s mission.  In particular, the book discussion provided an opportunity for life-long learning, helped people make more informed decisions about their health, and created a better understanding of health communication related to statistics.

Know Your Chances:  Understanding Health Statistics is a quick read and is freely available online on the PubMed Health bookshelf at:  For more information about the Health Statistics Book Discussion Project, please contact Michelle Eberle or Margot Malachowski.

It’s Summertime . . . and the Reading is Easy

Thursday, August 27th, 2015

[Guest post by Cara Marcus, MSLIS, AHIP, Director of Library Services, Brigham and Women’s Faulkner Hospital]

During the splendid days of summer, our thoughts shift to vacations, relaxing at the beach or by the pool, sipping lemonade on a chair on the porch as a gentle breeze passes by, and an enthralling book to read and lose oneself in.  So where do you find a great summer reading book?  At your local health sciences library, of course!

At Brigham and Women’s Faulkner Hospital, our Medical Library and Patient/Family Resource Center regularly host BookTalks throughout the year.  They are open to all staff, volunteers, patients, family members, and the community.  During the summer, BookTalks include topics that invite reflection and relaxation, such as Learning to Dance with the Dragonfly: Healing Lessons of Nature, Hope in the Midst: 30 Devotions of Comfort and Inspiration, and 100 Quotations to Make You Think.  These talks are only a half-hour in length, suitable for staff to come during their lunch or break, and for patients before or after an appointment.  I introduce the books, and participants take turns reading passages and often view beautiful illustrations or photos.  The talks lead to spirited interactions and discussions, and yes, many people want to read the books.

Since 2014, I have facilitated a summertime community read for BWFH’s Cultural Competence Steering Committee entitled “One Book: One Hospital”.  Each year, the committee selects a book focusing on a different culture – last year’s choice was My Beloved World by Sonia Sotomayor, and this year’s selection is Things Fall Apart by Chinua Achebe.  The program includes in-person and social media book discussion sessions, open house tables with raffles to win the book, table tent signs in the cafeteria with book discussion questions to get people reading and talking about the book, and immersion into the book’s culture with food, music, art, and more.  This year’s program has been so successful that the book has been checked out over two dozen times, and even with twelve books in the collection, there has been a waiting list all summer.

We also hold periodic special BookTalks when a member of the hospital staff publishes a book of interest to the general public.  These wonderful programs are of great interest to the whole community.  We’ve held talks on The Origin of the Human Mind, If You Felt Like I Did, You’d Start Running, and The Migraine Solution: A Complete Guide to Diagnosis, Treatment, and Pain Management.  The authors themselves lead these special BookTalks, with the added bonus of having an expert Q&A session included in the program.  We’re ending this summer with a very special program by a BWFH surgeon – Dr. Onali Kapasi, who will be reading from his book of poetry, Mind’s Eye: A Vision into the Depths of Consciousness.  Of course, NER’Eastah readers are invited – the poetry reading will be held on September 21, 2015 at 7 pm in Brigham and Women’s Faulkner Hospital’s Huvos Auditorium (directions).  Hope to see you there!

If you want to get started hosting similar programs in your library, here are some tips:

  • Visit some BookTalks and book discussion groups in your area. Your local public library probably has some that you can participate in.
  • Learn about how to start your own group, develop questions, and promote the program. The American Library Association has some excellent resources.
  • Comb your collection for fascinating and unique titles. Don’t forget your e-books – we’ve had some great BookTalks with e-books by passing around the library Nook.  Make sure that you enjoy the book you are presenting!
  • You don’t even have to own the book in your library to host a program – you can ask participants to purchase a copy or borrow a copy from their local library.
  • Find departments or groups in your organization to champion the program. You may even be invited to present a book at a staff meeting and have a ready-made audience.  Public Affairs and Marketing departments always have great ideas and can help you spread the word about your program.
  • Practice with your staff or volunteers (or even your own family or friends) before going live with your book discussion group.
  • At the end of each session, ask participants what other books they’d like to read – it’s never too early to start planning for next summer.

Happy reading!

By Cara Marcus, MSLIS, AHIP
Director of Library Services, Brigham and Women’s Faulkner Hospital

RFI for NIH-wide Strategic Plan

Wednesday, July 22nd, 2015

[Guest post:  NIH]

National Institutes of Health
Office of the Director
Bethesda, MD 20892

Date: July 21, 2015

Dear Colleague,

In order to advance the NIH mission, we are developing an NIH-wide Strategic Plan. The goal of this 5-year plan is to outline a vision for biomedical research that ultimately extends healthy life and reduces illness and disability. NIH senior leadership and staff have developed a proposed framework for the Strategic Plan that identifies areas of opportunity across all biomedicine and unifying principles to guide NIH’s support of the biomedical research enterprise. The aim is to pursue crosscutting areas of research that span NIH’s 27 Institutes, Centers, and Offices.

I invite you to review the framework in our Request for Information (RFI: and on the NIH website (, and to provide your feedback via the RFI submission site ( I encourage stakeholder organizations (e.g., patient advocacy groups, professional societies) to submit a single response reflective of the views of the organization/membership as a whole. We also will be hosting webinars to gather additional input. These webinars will be held in early to mid-August.

Your input is vital to ensuring that the NIH Strategic Plan positions biomedical research on a promising and visionary path. I appreciate your time and consideration in assisting us with this effort.


Lawrence A. Tabak, D.D.S., Ph.D.
Principal Deputy Director, NIH

Improving the Health Experience

Thursday, April 9th, 2015

The HxRefactored Conference brings together designers, health care providers, public health professionals, and others interested in the intersection of design and technology for a cross-disciplinary exploration of ways to improve the health experience. On April 1st and 2nd, I attended the conference in Boston, Massachusetts sponsored by MadPow and Health 2.0

The conference was jam-packed with inspiring presentations on topics including human centered design/usability, technology, health literacy/equity, mindfulness/stress reduction, behavior change, patient activism, electronic health records and organizational design.  Presenters shared ways to use design and technology to improve the health experience.  I hope you find these summaries of keynote presentations food for thought on creative ways to improve the health experience.

Keynotes ~ April 1, 2015

John Brownstein, Associate Professor at Harvard Medical School and the Computational Epidemiology Group at Children’s Hospital, explored the intersection of data and design for disease prevention in his keynote.  He asked, “How do we make everyone a stakeholder in public health?”  He shared real time detection of public health issues through social media platforms like HealthMap; StreetRx; and MEDWATCHER.  He also discussed new technology like iThermometer, a wearable thermometer that alerts parents of their child’s fever on their smartphone.   His presentation made me think about ways librarians can get involved with the development of social media platforms and new technologies to support public health.

Darshan Mehta, from MGH’s Benson-Henry Institute for Mind and Body Medicine, discussed how to build resiliency with an introduction to the relaxation response.  I’ve been practicing meditation since high school.  I enjoyed his guided relaxation.  It was a nice way to start the first day of the conference.  Mehta spoke about how meditation increases the cortical thickness and can change gene expression.  According to Mehta, mind/body practices reduce the frequency of medical symptoms, decrease the severity of psychiatric symptoms, and increase healthy lifestyles.  This presentation may inspire me to initiate a weekly mindfulness meditation group here at UMassMed School.

Keynotes ~ April 2, 2015

Steve Krug, author of Don’t Make Me Think and Rocket Surgery Made Easy, kicked off day two of the conference.  He only had twenty minutes but led a DIY (do-it-yourself) usability testing example with a volunteer from the audience.  His recommended DIY testing, preferably once a month on the same day – and stick to it!  Also, make it a spectator sport and have as many people as possible come watch.  Then, more people on your staff gain skill in usability testing.  For more information, check out his site, Advanced Common Sense

 Deborah Estrin, Professor of Computer Science  from Cornell NYC Tech, presented on small data.  She talked about using mHealth and small health to create data driven feedback loops of health.  She urged us to invest in interoperable and iterative approaches to benefit from reuse of tools and techniques.  She asked us: “How can we help create resources to help patients answer the question: are you feeling better?”  For examples of such resources, she mentioned Paragon Measure (turning mobile device use into actionable insights) and (using smartphones to improve mental health care).  She wrapped up by urging attendees to create an ecosystem around small data.

John Halamka, Chief Information Officer at the Beth Israel Deaconess Medical Center, Chairman of the New England Healthcare Exchange Network, spoke about what’s new in HealthIT in 2015.  I’m sure many of you remember his excellent presentation at the NAHSL Annual Conference.  He discussed the federal interoperability roadmap, meaningful use stage 3, new mobile devices, private security challenges and the return to private sector innovation.  I was pleased to hear him mention National Library of Medicine’s free access to vocabulary standards for interoperability.  I was tweeting during the conference and my tweet with the link to NLM’s free APIs (application programming interfaces) was my most retweeted and favorited tweet of the conference.  Interested to learn more?  Check out how the NLM APIs can be used to support electronic health record certification and meaningful use.

Geoff Williams, of the University of Rochester Healthy Living Center Motivation Research Group, spoke about self-determination theory and how people change. He asked,”Does it come from the inside or outside?”  He told us about the psychological needs to support optimal health such as autonomy, competence, and feeling connected to others.

Jared Spool, author of Web Anatomy and Web Site Usability, declared design, “the rendering of intent.”  He asked: “What is the experience we want them to have?  Are we designing activities or experiences?”  He discussed a design process for the design experience and the importance of facilitated leadership.   According to Spool, “The best design teams worship inclusiveness.”

Julian Treasure, Master of Sound and author of Sound Business, was one of my favorite HxR presenters.  He told us the noise is the number one complaint in the hospital experience, the number one problem with productivity in the workplace, and that elevated noise leads to worse health.  He recommended improving acoustics, reducing noises, and designing soundscapes. He shared acronyms to help us learn to listen better and speak powerfully.  He wrapped up with a vocal toolbox activity.  If you are curious to learn more, listen to his TedTalk.

The HxR conference was full of creative and practical ways to improve the health experience. I left inspired to bring what I learned back to our network.  I learned about some amazing presenters that we might be able to host for regional conferences and webinars. I found it an insightful, useful conference and highly recommend it.  Stay tuned for my next blog post about what I learned at the breakout sessions.

Thanks MadPow and Health2.0 for a great conference!



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