Free Library Puts Resources About Minority Health Within Arm’s Reach – National Partnership for Action to End Health Disparities
From the 9 April 2013 article at the National Partnership for Action to End Health Disparities
The Office of Minority Health Knowledge Center supports National Minority Health Month by highlighting many information resources available to the public. The Knowledge Center focuses its collection on consumer health and many other health equity issues, and builds on this year’s theme ofAdvance Health Equity Now: Uniting Our Communities to Bring Health Care Coverage to All.
Created in 1987, the Knowledge Center indexed and tracked the concept of health disparities in the available literature long before it appeared in the forefront of public health concerns. Today, the library offers both a historical and present day picture of the health status of minority populations and holds a collection of 10,000 reports, books, journals and media, and over 35,000 articles, which makes it the largest repository of minority health information in the nation.
Equal access to health care has long been a factor in health equity, and the Knowledge Center library catalog reflects those concerns. By searching our catalog, you will find many reports, books and fact sheets which explain disparities in access to health insurance and health care.
And the Knowledge Center is more than a library. We also contribute to the outreach and educational activities of the Office of Minority Health and reach out to other libraries to support their consumer health education initiatives. For example, a recent presentation and exhibit at the Joint Conference of Librarians of Color highlighted our services and resources for public and academic libraries.
Other libraries have found ways to advance health equity, in keeping with objectives set by our National Partnership for Action (NPA). As an NPA partner, the University of Maryland Health Sciences and Human Services Library developed a health advocates program for local high school students (read more about the program.)
With 35 languages represented in our collection, the Knowledge Center is open to the public for research about a variety of diseases and health topics and you can search the database right from your desktop.
We invite you to take a look at our online catalog and conduct a search. Enter the search terms “Affordable Care Act” and discover what OMHRC has to offer you.
For questions or search assistance, please contact us at KnowledgeCenter@minorityhealth.hhs.gov.
Do you want to be a disease detective? the Centers for Disease Control and Prevention (CDC) have released a new app, Solve the Outbreak.
New outbreaks happen every day and CDC’s disease detectives are on the front lines, working 24/7 to save lives and protect people. When a new outbreak happens, disease detectives are sent in to figure out how outbreaks are started, before they can spread.
- CDC iPad App Lets You Solve Disease Outbreaks (mashable.com)
- New CDC App Turns You into a Disease Outbreak Detective (forbes.com)
- CDC app lets you solve disease outbreaks at home (onlineathens.com)
- Play Disease Detective With New CDC App (medicalnewstoday.com)
- CDC Launches Free App 'Solve the Outbreak' (counselheal.com)
- CDC app turns iPad users into disease detectives (bizjournals.com)
From the 20 March 2013 post at Science Roll
I was very glad to see the new book authored by e-Patient Dave deBronkart, whose thoughts I describe to medical students as a part of the official curriculum at Semmelweis Medical School, just became available.
Medical professionals must let patients help and become equal partners in the treatment! A must-read book!
Concise reasons, tips & methods for making patient engagement effective.
Third book by e-Patient Dave, cancer beater, blogger, internationally known keynote speaker and advocate for patient engagement; co-founder and past co-chair of the Society for Participatory Medicine. Profile:http://www.ePatientDave.com/about-dave
- Let Patients Help: A New Book Authored by e-Patient Dave deBronkart (scienceroll.com)
- Project HealthDesign’s new video series: Conversations with e-PatientDave (projecthealthdesign.typepad.com)
- Part 1: Value of social media in healthcare is already outlined – just not realized (himss.org)
- The Multidimensional Role of Social Media in Healthcare (gumption.typepad.com)
- First Post: A Video About Patients Involvement in Their Own Healthcare (healthitoutlook.wordpress.com)
- The 7 Habits of Highly Patient Centric Providers (forbes.com)
- I’m an e-patient: equipped, enabled, empowered, engaged (worldofdtcmarketing.com)
The first set of national prevalence data on intimate partner violence (IPV), sexual violence (SV), and stalking victimization by sexual orientation was released today by the Centers for Disease Control and Prevention (CDC). The study found that lesbians and gay men reported IPV and SV over their lifetimes at levels equal to or higher than those of heterosexuals; with sexual orientation based on respondents’ identification at the time of the survey.
The survey also found that bisexual women (61.1 percent) report a higher prevalence of rape, physical violence, and/or stalking by an intimate partner compared to both lesbian (43.8 percent) and heterosexual women (35 percent). Of the bisexual women who experienced IPV, approximately 90 percent reported having only male perpetrators, while two -thirds of lesbians reported having only female perpetrators of IPV.
The data presented in this report do not indicate whether violence occurs more often in same-sex or opposite sex couples. Rather, the data show the prevalence of lifetime victimization of intimate partner violence, sexual violence and stalking of respondents who self-identified as lesbian, gay or bisexual at the time of the survey and describe violence experienced with both same-sex and opposite-sex partners. …
Other key findings include:
- The majority of women who reported experiencing sexual violence, regardless of their sexual orientation, reported that they were victimized by male perpetrators.
- Nearly half of female bisexual victims (48.2 percent) and more than one-quarter of female heterosexual victims (28.3 percent) experienced their first rape between the ages of 11 and 17 years.
CDC will work to create resources to bring attention to these issues within lesbian, gay, bisexual, and transgender communities.
For more information about NISVS, including study details, please visit http://www.cdc.gov/violenceprevention/nisvs/index.html.
To watch webinars that discuss the NISVS 2010 Summary findings, please visit PreventConnect, a national online project dedicated to the primary prevention of sexual assault and domestic violence.
- CDC Releases First National Study On Rape And Domestic Violence Based On Sexual Orientation (queerty.com)
- Bisexual Women at Especially High Risk of Sexual Violence, CDC Says (nlm.nih.gov)
- LGB People Experience Domestic Violence at Same Rate as Heterosexuals (advocate.com)
- Domestic violence, rape an issue for gays (vitals.nbcnews.com)
- Bisexual Women Twice As Likely To Be Abused And/Or Raped, Study Says (thoughtcatalog.com)
My questions when considering a new technology
To begin with, here are the questions that I think about when considering a new technology:
Does it help me do something I’m already trying to do for clinical reasons? Examples include tracking the kind of practical data I describe here (sleep, pain, falls, etc), helping patient keep track of — and take — medications, helping caregivers monitor symptoms, coordinating with other providers…my list goes on and on, although I’ll admit that I prioritize management of medical conditions, with issues like social optimization being secondary. (Social optimization is crucial, it’s just not what physicians are best at, although I certainly weigh in on how an elder’s dementia or arthritis might affect their social options.)
What evidence is there that using it will improve the health and wellbeing of an older adult (or of a caregiver)? Granted, the vast majority of interesting new tech tools will not have been rigorously tested in of themselves. Still, there is often related and relevant published evidence that can be considered. For instance, studies have generally found that there’s no clear clinical benefit in having non-insulin dependent Type 2 diabetics regularly self-monitor blood glucose. (And it is certainly burdensome for older people with lots of medical problems.) Hence I would be a bit skeptical of a new technology whose purpose is to make it easier for older adults to track their blood sugar daily, unless it were targeted towards elders on insulin or otherwise at high risk for hypoglycemia.
How does the data gathering compare to the gold standard? Many new tech tools gather data about a person. If we are to use this information for clinical purposes, then we clinicians need to know how this data gathering compares to the gold standard, or at least to a commonly used standard. For instance, if it’s a consumer wrist device to measure sleep, how does it compare in accuracy to observation in a sleep lab? Or to the actigraphy used in peer-reviewed sleep research? If it’s a sensor system to monitor gait, how does it compare to the gait evaluation of a physical therapist? If it’s the Scanadu Scout Tricorder, which measures pulse transit time as a proxy for systolic blood pressure, where is data validating that pulse transit time as measured by this device accurately reflects blood pressure? (BTW I can’t take such a tricorder seriously if it doesn’t provide a blood pressure estimate that I can have confidence in; blood pressure is essential in internal medicine.)
How exactly does it work? Especially when it comes to claims that the product will help with clinical care, or with healthcare, I want to know exactly how that might work. In particular, I want to know how the service loops in the clinician, or will facilitate the work the clinician and patient are collaborating on.
How easy is it to use? Tools and technologies need to be easy to use. Users of interest to me include older adults, caregivers, and the clinician that they’ll be interfacing with. BTW, all those med management apps that require users to laboriously enter in long drug names are NOT easy to use in my book.
How easy is it to try? Let’s assume a new technology is proposing a service to the patient (or to me) that offers plausible benefits, either because it’s a tech delivery of a clinically validated service, or because it passes my own internal common sense filters. How easy is it to actually set up and try? I’m certainly more inclined to explore a tool that doesn’t require a large financial investment, or training investment.
How cost-effective is using this technology? I’m interested both in cost-effectiveness for the patient & family, and also for the healthcare system. Sometimes we have simpler and cheaper ways to get the job done almost as well.
Can this technology provide multiple services to the patient? My patients are all medically complex, and have lots going on. Products that can provide multiple services (such as socializing with family off-site AND monitoring symptoms), or that can coordinate with another product — perhaps by allowing other services to import/export data — are a big plus.
Does this technology work well for someone who has lots of medical complexity? I always want to know if the product is robust enough to be usable by someone who has a dozen chronic conditions and at least 15 medications.
What I’d like to see on the websites
These days, a website is the generally the place to start when looking into a product or service.
It’s a great help to me when a product’s website addresses the questions I list above. Specifically, I find it very helpful when websites:
Have a section formatted for clinicians in particular. I’m afraid I don’t have much time for gauzy promises of fostering a happier old age. I just want to know how this will help me help my patients. Specific examples are very very helpful.
Have a “how it works” section with screenshots and concise text. Personally, I have limited tolerance for video (videos can’t be skimmed the way text and pictures can) and find it a little frustrating when most information is in videos. Note that it’s probably best to have separate “how it works” sections for clinicians and for patients/caregivers.
Provide a downloadable brochure for patients/families, and another for clinicians.Although it’s annoying when information is presented ONLY in a pdf brochure, I’ve discovered that I quite like having the option of a brochure. Brochures are much easier to read than websites, in that you don’t have mentally decide how to navigate them, or search through them in quite the way you do with websites. Also, brochures can be conveniently emailed to colleagues or patients, which is nice when you want to suggest that your patient try something new…..
- 4 ways to make IT clinician-friendly (healthitplus.wordpress.com)
- Readers Write: Healthcare’s Crystal Ball – Predictions for 2013 (histalk2.com)
- Physicians’ websites are more “electronic brochures,” than online health resources (medcitynews.com)
- Capturing clinical innovation to improve patient care (siliconrepublic.com)
- Health, Technology and the Forgotten Stepchild of Innovation (forbes.com)
A nationwide survey ***of US adults finds that 1 in 3 of Americans say they have used the internet to help them diagnose a medical condition, either for themselves or someone else. But, when asked who they turned to for help with a serious health issue, either online or offline, the majority said they turned to a doctor or other health professional…
…when these “online diagnosers” were asked who they turned to for information, care or support the last time they had a serious health problem, either online or offline:
- 70% said they got it from a health professional,
- 60% turned to family and friends, and
- 24% said they got it from others with the same condition.
When the survey asked online diagnosers if the information they found online had led them to think they needed to see a doctor, 46% said yes, while 38% said they could take care of it themselves and 11% said it was a case of both or something in between.
- Internet Is First Stop for Many Ill People, Study Finds (mashable.com)
- 1 in 3 adults search online for medical diagnosis (cbc.ca)
- ‘Doctor Google’ Isn’t Replacing Actual Doctors Any Time Soon (betabeat.com)
***The full Pew Internet report Health Online 2013 may be found here
Practical ways parents and others can help children in the days, weeks, and months after traumatic events.
From the US National Institute on Mental Health.
Tips are practical and some are arranged by age groups.
An excerpt from the booklet
How Parents Can Help:
After violence or a disaster parents and family should:
- Identify and address their own feelings — this will allow them to help others
- Explain to children what happened
- Let children know:
- You love them
- The event was not their fault
- You will take care of them, but only if you can; be honest
- It’s okay for them to feel upset
- Allow children to cry
- Allow sadness
- Let children talk about feelings
- Let them write about feelings
- Let them draw pictures
- Expect children to be brave or tough
- Make children discuss the event before they are ready
- Get angry if children show strong emotions
- Get upset if they begin:
- Acting out
- If children have trouble sleeping:
- Give them extra attention
- Let them sleep with a light on
- Let them sleep in your room (for a short time)
- Try to keep normal routines (such routines may not be normal for some children):
- Bed-time stories
- Eating dinner together
- Watching TV together
- Reading books, exercising, playing games
- If you can’t keep normal routines, make new ones together
- Help children feel in control:
- Let them choose meals, if possible
- Let them pick out clothes, if possible
- Let them make some decisions for themselves, when possible.
- How to talk with children about the Connecticut shooting, other tragedies (q13fox.com)
- SAMHSA Coping with Violence and Traumatic Events (samhsa.gov)
- How to Cope With Fear After School Shootings (livescience.com)
- NAEYC Tips for Talking to Young Children (drcindysimpson.com)
- Save the Children Offers 10 Tips to Help All Children Cope (5minutesformom.com)
(And no, I am not advertising these books, or endorsing the contents of these books, only pointing to a trend!)
Today, more and more books are being written by patients — well-educated, informed patients who manage their illness successfully and have experience, practical knowledge and insights to share with other patients.
As the new year incites a rush to become a “new, better and healthier you,” we often do so learning from our peers. When it comes to illness-warranted behavior changes, as like seeks like, it’s often easier to make changes learned from fellow patients with whom you share the experience of a disease. Like support groups and mentor programs, this is fertile soil for positive behavior change. So, I applaud the rise of patient-authors.
Patient-authors also narrate the experience of illness. That is why I hope health care professionals (HCPs) are also reading books written by patients. A book like No-Sugar Added Poetry, for example, can give HCPs immediate access to some of the emotional landscape of living with diabetes.
There is, in my mind, no easier or quicker way to tap into the experience of illness — what patients grapple with, how they feel, and the practical things that must be managed every day — than by reading a patient-written book.
When clinicians do, I believe they will become more mindful and compassionate and the relationship with their patients more trusting. And that can lead to better outcomes for both….
Read the entire article here
San Francisco VA Medical Center and UCSF develop user-friendly online tool for advance care planning
IMAGE: This is Rebecca Sudore, M.D.Click here for more information.
A new patient-friendly online resource called PREPARE has been developed to help people make complex medical decisions. The website was developed by researchers from the San Francisco VA Medical Center, UCSF, and NCIRE – The Veterans Health Research Institute.
The PREPARE website incorporates content identified in new research to address key patient- and surrogate-identified aspects of preparing for advance care planning and decision making. The site provides concrete examples through videos and other mechanisms on how to identify what is most important in life, how to communicate that with family and friends and doctors, and how to make informed medical decisions….
There are few resources which can adequately prepare patients and their families to face serious illness or a medical crisis – situations which often involve complex decisions over time,” said lead study author Rebecca Sudore, MD, SFVAMC geriatrician and palliative medicine physician and associate professor medicine at the UCSF School of Medicine.
“Advance directives are important, but they are just one piece of the puzzle,” she said. “We wanted to develop a value-driven, easy-to-use tool to prepare people to make medical decisions that reflect their values and needs while preparing them to effectively communicate these wishes with others.”
This study identified key themes critical to successful advance care planning that go beyond completing an advance directive form. These include successful surrogate selection and communication with the surrogate, determination of the surrogate’s role, and communication with family and doctors.
The website’s audio-visual interface is tailored to typically underserved populations (including users with low health or computer literacy and/or visual or hearing impairment) and aims to incorporate a patient-centered, comprehensive and manageable approach.
The PREPARE website is written at a fifth-grade reading level, and includes voice-overs of all text, closed-captioning for the hearing impaired, and large font for the visually impaired. In preliminary pilot testing, older adults from diverse backgrounds rated PREPARE a nine out of a 10- point-scale for ease of use, according to Sudore.
“We wanted to make the website free and easy-to-use by everyone,” she said. “We made sure to take advice given to us by patients and surrogates. The site doesn’t merely ask people to do advance care planning, but actually shows people, through videos and a step-by-step process, how to actually have the conversation and make informed medical decisions.”
The study included 69 English and Spanish-speaking patients and surrogate decision makers who reported having to make serious medical decisions for themselves or loved ones. The mean age of patients was 78 years and 61 percent were non-white. The mean age of the surrogate decision makers was 57 years, and 91 percent were non-white.
Qualitative analysis revealed that advance directives were not enough to prepare patients and surrogates for medical decision making. Many participants stated that solely focusing on treatments, such as mechanical ventilation, was not sufficient to help with the “many decisions” with which they were facing…
- “The Ultimate Decision Is Yours”: Exploring Patients’ Attitudes about the Overuse of Medical Interventions (plosone.org)
- Beyond Informed Consent: Shared Decision-Making|Harriet Hall|Science-Based Medicine (sciencebasedmedicine.org)
- Will doctors recommend health apps to patients? (kevinmd.com)
- Doctors call for evidence-based appropriateness criteria for elective procedures (jflahiff.wordpress.com)
“When I started, we had a stand-alone science/health section
and several people covering various aspects of the beat—health
policy/insurance, consumer health, and biosciences. Now
there’s only one person left with any medical journalism
training and that person is covering higher education.”
–15-year newspaper reporter laid off in 2008
“The pressure to produce from my editor blunts your ambition
because you know if you have a choice of a story you can turn
around in a week as opposed to one that may take 2- 3 times
as long, you have to juggle. You make choices based on the
stories you choose not to pursue. And that’s where readers
come out losers. That’s particularly true on health policy
and insurance. How ambitious am I going to be on this
story? Do I feel encouraged to do this kind of reporting
or” not? Those are dilemmas I face regularly.
–Major-market newspaper reporter
This report provides a snapshot of the current state of health journalism in the U.S. today. It is based on a literature review of more than 100 published pieces of research on health journalism; on a survey of members of the Association of Health Care Journalists (AHCJ), conducted by the Foundation and AHCJ; and on informal one-on-one interviews conducted by the author of this report with more than 50 journalists who work (or worked) for newspapers, radio and TV stations, magazines, and Web sites in small and large markets.
Excerpts from the report
The cuts in budget and personnel that so many newsrooms are facing contribute to several troubling trends in the content of health journalism:
- An emphasis on stories that can be produced quickly—often meaning more stories on medical studies, and sometimes sacrificing on quality.
- Fewer in-depth or complex stories, especially about health policy, and more “hyper-local” stories along with stories variously described as lifestyle, consumer, or news-you-can-use.
- Reliance on stories produced and syndicated elsewhere, by non-traditional news sources.
- The influence of commercial interests on health news, through video news releases (VNRs), sponsored news segments, free syndicated news segments from health providers, and the influence of PR firms steering the news.
[Janice's note...I am thinking of local hospitals who provide articles and interviews on the latest (expensive) procedures to the local media. Yes, hospitals are commercial interests. Seldom do these articles or interviews go into details about evidence, cost, or appropriateness.]
There is an undeniably widespread trend in TV news—often in health news—to label
as news some content which has been provided by industry sources who covet publicity in news programming. This practice takes several forms:
- Video news releases (VNRs) – produced and distributed by those promoting a product or cause. They are produced to look exactly like high-quality TV news packages. They are usually supplied on videotape or via satellite feed along with a script so that stations can put their own reporter’s face and voice on the story.
- Sponsored health news – usually paid for by a local medical center and featuring professionals from that medical center. The fact that these segments are paid for, and that they include only certain perspectives, is usually not disclosed.
- Free news segments from health providers – produced by medical centers, featuring only professionals from that organization.
“My biggest challenge? …Trying to figure who’s paying for what
pitch, who’s paying for what health campaign. There’s dollars
attached to everything.”
What’s a reader to do? Start by reading articles thoughtfully. Look for clues for completeness, strength of evidence, conflicts of interest, and authorship.
A few good resources on how to analyze medical and health news stories.
- Tips for Understanding Studies (HealthNewsReview.org)
- Evaluating Internet Health Information (Penn State)
- Evaluating Medical Research Findings and Clinical Trials (Family Caregiver Alliance)