Archive for the ‘consumer health’ Category

In remembrance year 6: Know the signs

Tuesday, November 26th, 2013

 

Dorothy Irene
4/26/24 – 11/24/98

(yours truly in the 1970s culturally inappropriate Indian attire, with a wink and a smile to David Hale)

Heart Attack Signs for Women

This is my yearly post to increase awareness of the signs of a heart attack which is still the #1 killer for women. It’s not merely #1, it leaves deaths from all cancers combined for women in the dust (infographic excerpt source)

Although much progress has been made since I was making funeral arrangements for instead of getting ready to celebrate with my grandma this Tuesday before Thanksgiving 15 years ago (the original post and story) I know more can be done.

Please make sure your family and friends know these important signs of a heart attack. Never disregard them as indigestion, the flu, or make a doctor appointment for later in the day when it’s more convenient for everyone else. It was too late for my Grandma by the time she saw her doctor – she died within hours despite every effort made to save her after being rushed to the emergency room. (Source of signs from Go Red for Women)

  1. Uncomfortable pressure, squeezing, fullness or pain in the center of your chest. It lasts more than a few minutes, or goes away and comes back.
  2. Pain or discomfort in one or both arms, the back, neck, jaw or stomach.
  3. Shortness of breath with or without chest discomfort.
  4. Other signs such as breaking out in a cold sweat, nausea or lightheadedness.
  5. As with men, women’s most common heart attack symptom is chest pain or discomfort. But women are somewhat more likely than men to experience some of the other common symptoms, particularly shortness of breath, nausea/vomiting and back or jaw pain.

If you have any of these signs, don’t wait longer than five minutes before calling 9-1-1 for help. Also know what your heart attack risk factors are such as high cholesterol, diabetes, smoking and high blood pressure in addition to family history.

Under 55 and think heart attacks aren’t possible for you? Think again. It is taking medical research a while but they are learning more about why heart attacks in women under 55 are often deadlier than they are for those who are older – possibly due to being linked to blood clots instead of plaque buildup in arteries (source)

In younger women, instead of chest pains, the symptoms of heart attack may include more generalized pain in different parts of the body, including the jaw, neck, shoulder, back and even stomach. Recognizing that younger women may be less likely to present with the typical chest pains of a heart attack could help more of these patients to get the treatment they need in a more timely manner

Thank you for taking the time to read this and spread the word this Thanksgiving!

Pew Health Online 2013: From a medical librarian perspective

Monday, January 14th, 2013

First, I want to express my gratitude to Susannah Fox at Pew Internet for making advance copies of Health Online 2013 (a 53 page PDF) available to bloggers so I was able to read & reflect a bit on this at home Monday night before the launch of the public report on Tuesday. The data for the report was collected in August-September 2012 based on both landline and cell phone interviews with 3,014 adults living in the United States.

I’ll break this coverage down into two parts: short & sweet (aka just the stats), and anything but sweet with regards to information paywalls and their notable effect on searching for health information. Paywalls are an area  librarians are usually thinking about, but especially now after the tragic death of Aaron Swartz last week.

Just the Stats

The ‘health diagnosers’ section

  • 1 in 3 American adults (35%) have gone online specifically to find out what medical condition they or someone else might have
  • Pew refers to those who have searched for health information online specifically to find health answers ‘online diagnosers’ in the report
  • 46% of online diagnosers agreed that the information they found online led them to think they needed medical attention
  • 41% of online diagnosers said a medical professional confirmed their diagnosis, 35% did not visit a clinician to get a professional opinion

The ‘online health seekers’ section

  • 72% of Internet users said they sought health information of some kind over the past year (not necessarily diagnostic)
  • Pew refers to these people as ‘online health seekers’ in this report
  • 77% of online health seekers start their searches at a search engine (roughly the same percentage as the first report in 2010), 13% start at a website dedicated to health information

Mobile health information

  • 85% of U.S. adults own a cell phone, 31% of these adults say they have used their phone to look for health or medical information online.
  • Latinos, African Americans, those between the ages of 18 and 49, and those who have attended at least some college education are more likely to search for mobile health information.

One in four people seeking health information online have hit a pay wall

To me as an information professional this is particularly important and not within the ‘at a glance’ stats, so I’m quoting it in entirety below from page 16, bold emphasis mine.

Twenty-six percent of internet users who look online for health information say they have been asked to pay for access to something they wanted to see online. Seventy-three percent say they have not faced this choice while seeking health or medical information online. Of those who have been asked to pay, just 2% say they did so. Fully 83% of those who hit a pay wall say they tried to find the same information somewhere else. Thirteen percent of those who hit a pay wall say they just gave up. Men, women, people of all ages and education levels were equally likely to report hitting a pay wall when looking for health information. Respondents living in lower-income households were significantly more likely than their wealthier counterparts to say they gave up at that point. Wealthier respondents were the likeliest group to say they tried to find the same information elsewhere. No income group was more likely to say they paid the fee.

While the academic libraries can have a part in leading to Small Victories in support of Open Access (OA) publishing in the first place, there clearly remains so much to be done to raise public awareness that librarians are there to help you access the information the internet is trying to charge you for… or locate an information resource that is an even better match for your question in the first place. Speaking of, were we librarians aware of libraries.pewinternet.org? I must have still been on a holiday daze to miss Mobile Connections to Libraries released on December 31, 2012 and other goodies in there!

In remembrance year 5: Know the signs

Tuesday, November 20th, 2012

 

Dorothy Irene
4/26/24 – 11/24/98

(yours truly in the 1970s culturally inappropriate Indian attire, with a wink and a smile to David Hale)

Heart Attack Signs for Women

This is my yearly post to increase awareness of the signs of a heart attack which is still the #1 killer for women. It’s not merely #1, it leaves deaths from all cancers combined for women in the dust (infographic excerpt source)

Although much progress has been made since I was making funeral arrangements for instead of getting ready to celebrate with my grandma the Tuesday before Thanksgiving 14 years ago (the original post and story) I know more can be done.

Please make sure your family and friends know these important signs of a heart attack. Never disregard them as indigestion, pneumonia, or make a doctor appointment for later in the day when it’s more convenient for everyone else. It was too late for my Grandma by the time she saw her doctor – she died within hours despite every effort made to save her after being rushed to the emergency room. (Source of signs from Go Red for Women)

  1. Uncomfortable pressure, squeezing, fullness or pain in the center of your chest. It lasts more than a few minutes, or goes away and comes back.
  2. Pain or discomfort in one or both arms, the back, neck, jaw or stomach.
  3. Shortness of breath with or without chest discomfort.
  4. Other signs such as breaking out in a cold sweat, nausea or lightheadedness.
  5. As with men, women’s most common heart attack symptom is chest pain or discomfort. But women are somewhat more likely than men to experience some of the other common symptoms, particularly shortness of breath, nausea/vomiting and back or jaw pain.

If you have any of these signs, don’t wait longer than five minutes before calling 9-1-1 for help. Also know what your heart attack risk factors are such as high cholesterol, diabetes, smoking and high blood pressure in addition to family history.

Under 55 and think heart attacks aren’t possible for you? Think again. It is taking medical research a while but they are learning more about why heart attacks in women under 55 are often deadlier than they are for those who are older – possibly due to being linked to blood clots instead of plaque buildup in arteries (source)

In younger women, instead of chest pains, the symptoms of heart attack may include more generalized pain in different parts of the body, including the jaw, neck, shoulder, back and even stomach. Recognizing that younger women may be less likely to present with the typical chest pains of a heart attack could help more of these patients to get the treatment they need in a more timely manner

Thank you for taking the time to read this and spread the word this Thanksgiving!

Opportunities: OpenNotes Results Published

Wednesday, October 3rd, 2012

From when I first heard about the OpenNotes Project (research to have patients access their doctors’ notes as part of their medical record) and included it in my June 2010 entry of Electronic Health Records: Not All About the Machine to meeting up with Dave again last month in Listen Again to the Ideas – The Role of the Patient, I’ve been looking forward to learning the results of the research.

Got under 5 minutes, appreciate great narratives and like videos? Here you go.

Like reading overviews with results pulled out in bullet points for easy reference? Go to e-patients.net’s coverage.

Like reading original publication data (of course you do!) ? Annals of Internal Medicine has it freely available.

Unfortunately I haven’t had a chance to read the full article yet. Questions I’ll have in my mind as I do will involve a focus on the experience of the research at Harborview, and opportunities for medical librarians to become involved with patients’ access to resources to understand the notes containing their health information. For as much as I love ePatient Dave he still is referencing Google as a starting point for health information research online. We medical librarians know there are much better ways, including the integration of health information resources within electronic health records such as MedlinePlus Connect, but it doesn’t help if others don’t know about and use them!

Listen Again to the Ideas – The Role of the Patient

Wednesday, September 12th, 2012

Has it really been over two years since I first met ePatient Dave, Susannah Fox and Regina Holliday in Washington DC and I wrote about the joy of connecting with others outside the medical library field Of Impact, Information and Ideas?

Yours truly and ePatient Dave

His reaction when he recognized me across the room was almost the same as it was then, and it was a pleasure to meet Sherry Reynolds (@Cascadia on Twitter) and Peggy Zuckerman from the Society for Participatory Medicine.

I was thrilled that the Puget Sound Health Alliance brought Dave out to Seattle yesterday to address these points during his talk about empowering patients:

  • What challenges do empowered patients face in today’s health care system?
  • What does it mean to take an active role in your health care?
  • What role does power play in health care?

In the interest in getting this up ASAP my Evernote page of notes and pictures from his talk will be an edited work in progress but a few obvious and not so obvious highlights to shout out now and cover in more detail later.

He didn’t mention this at all (and should have done a live singalong!) but Dave’s performance in Gimme My DaM Data is a must see.

Announcing HLWIKI Advisory Role

Wednesday, August 15th, 2012

It is a sincere pleasure to serve on the advisory of HLWIKI International, an already amazing resource, as it expands with a greater global focus from its original incarnation as HLWIKI Canada.

I’m particularly humbled to be the first United States representative and will strive to do my best to bring a wealth of perspectives from both my Me as My Job and Me As Me sides. Not that I have a split personality but they are currently fairly different professional outlets as you may be able to tell from the crickets around this blog as I’m focusing on getting the Thursday night #medlibs Twitter chats on solid ground over the past few months. It’s been quite an interesting experience and I’m enjoying watching it grow!

In remembrance year 4: Know the signs, engage with grace, and happy Thanksgiving

Wednesday, November 23rd, 2011

Dorothy Irene
4/26/24 – 11/24/98

(yours truly in the 1970s culturally inappropriate Indian attire, with a wink and a smile to David Hale)

Heart Attack Signs for Women

This is my yearly post to increase awareness of the signs of a heart attack which is still the #1 killer for women. Although much progress has been made since I was making funeral arrangements for instead of getting ready to celebrate with my grandma the Tuesday before Thanksgiving 13 years ago (the original post and story), I know more can be done.

Please make sure your family and friends know these important signs of a heart attack and to not disregard them as indigestion, pneumonia, or to make a doctor appointment for later in the day when it’s more convenient. It was too late for my Grandma by the time she saw her doctor – she died within hours despite every effort made to save her. (Source of signs from Go Red for Women)

  1. Uncomfortable pressure, squeezing, fullness or pain in the center of your chest. It lasts more than a few minutes, or goes away and comes back.
  2. Pain or discomfort in one or both arms, the back, neck, jaw or stomach.
  3. Shortness of breath with or without chest discomfort.
  4. Other signs such as breaking out in a cold sweat, nausea or lightheadedness.
  5. As with men, women’s most common heart attack symptom is chest pain or discomfort. But women are somewhat more likely than men to experience some of the other common symptoms, particularly shortness of breath, nausea/vomiting and back or jaw pain.

If you have any of these signs, don’t wait longer than five minutes before calling 9-1-1 for help.

Think only older women have heart attacks? Think again.

 

 Engage With Grace http://engagewithgrace.org/

I was the executrix of my Grandma’s estate at the ripe old age of 25 including making her final arrangements. If anything can accelerate aging roughly one decade in the span of one month, that experience can. I’m a bit put out that I didn’t even receive funeral home swag during the ordeal. Ok, I’m not, but please read Regina Holliday’s account about Engage With Grace. You have no idea how quickly life can turn itself upside down where you have to make decisions about health care on behalf of your family members who are suddenly unable to do so for themselves. Start the conversation now. Please.

I both know the answers to everything & where all the paperwork is for my mom and we review them every Thanksgiving while remembering that one from 13 years ago. I both appreciate and dread the process, and my husband & I have had everything regarding both advance directives and the rest of our stuff in order for years.

Happy Thanksgiving

Now for something completely unexpected, this is the first Thanksgiving our son & I are aware of the fact that we are Mayflower descendants. My Grandma and my second Grandpa (first Grandpa had the Mayflower lineage) made this stained glass panel and our son asked if it was the Mayflower – I replied that it wasn’t but he was welcome to think of it that way if he wanted to.

You can see the typical idyllic Pilgrim children window clings. Our ancestor Richard Moore was a young child then too but probably wasn’t smiling. A lot about him was very hard even for professional researchers to figure out for centuries, but what is known is that his life is “bizarre and interesting

  1. He, his brother and 2 sisters were likely the results of a longstanding affair their mom (of royal descent) was having at the time
  2. Mom didn’t particularly want them, so her husband arranged for them to be shipped off with some “honest and religious people” for a new life as he divorced her
  3. His brother and 2 sisters died during the first winter at Plymouth
  4. All of this happened by the time he was 7 years old
  5. Thanks to Elder Brewster and his family for helping him survive to be an adult

As an adult he lived to be old enough to witness the Salem witch trials, is the only Mayflower passenger with an original gravestone, and the only survivor proven to have royal lineage. Add in that he was apparently a lech, probably a bigamist, and excommunicated from the church for a while and it looks like he has very strong reality show potential even all these centuries later.

I’m still processing all this information and know that we can’t choose where we’re from, but believe it’s important to try to have both awareness and understanding of what our past includes. Many thanks to Martha for pointing out American Indian Perspectives on Thanksgiving that I’ll combine with Coming to America (the Mayflower Society’s perspective) in due time along with the ‘bizarre and interesting’ details.

Period of PURPLE Crying: What I wish I had 9 years ago

Thursday, October 13th, 2011

There is plenty of research showing that the sound of a baby crying is about the most aggravating noise possible to people – and for good biological reason so that baby has someone’s attention! Society can swing between totally unsupportive and united in solidarity with parents trying to help soothe crying babies, as was the Oregon case of a mom & crying baby being ordered off a bus by the driver shortly followed by every other passenger.

A public awareness campaign called the Period of PURPLE Crying (purplecrying.info) has been developed by the National Center on Shaken Baby Syndrome (NCSBS) that focuses on the normal developmental stage all babies go through between when they are several weeks old to 5 months or so where they simply cry for no apparent reason and nothing you do seems to help.

This is about the most unpredictable, heartwrenching, and frustrating experience possible with a new baby, and add several months of being sleep deprived on top of that and it’s easy for mom and dad to join in the meltdowns too. The term ‘having colic’ can imply to parents living on the edge already that their baby is sick or has a medical condition, making them feel even worse instead of helping them realize this is part of normal child development.

The website includes an online magazine, videos, and supportive plain language resources and has been translated into 10 languages with closed captioning for the hearing impaired. I love their Facebook page showing pictures of all the purple knitted baby hats to raise awareness of the campaign – perfect and much better than the standard pink/blue hats! A DVD and booklets are supposedly available for health care providers to teach about the program and answer parents’ questions, although I’m having trouble finding where they can request them from the website.

Boobiethon 2011 – Support can have benefits!

Tuesday, October 4th, 2011

It’s been two years since I won the Boobiethon and had this amazing blog redesign. If you’ve been ogling mine (my blog, people) and have the inclination to both support breast cancer research and possibly win your own blog design, I highly encourage you to enter to win this year’s Boobiethon!  You can’t possibly work with a more fun and classy team than The Moxie Girls and Green Couch Designs, trust me.

Promoting the Boobiethon is particularly poignant this year since something suspicious popped up in my aunt’s mammogram, and now during Breast Cancer Awareness month she’s entering treatment at the same time her sister did 21 years ago.

I’m still not to the point where I can put everything into words. I may never be able to. I have learned so much about what being a medical librarian really means after having the first 3 years of my career in the field be rather abstract by connecting with and teaching other medical librarians for the most part. I work for the National Network of Libraries of Medicine promoting National Library of Medicine resources so you’d think this wouldn’t be such a shocker to me, but the current research and quality health information I provided my aunt to discuss with her care team floored highly regarded oncologists and made my always-hip aunt look very cutting edge. I am in awe of my colleagues who get to do this every single day.

I lost my blogging mojo due to needing to focus on my family (with the notable exception of the morning I backed into my own mother’s car) but now that a treatment plan has been put into play I’m back in the saddle again.

Maelstrom – Patient preference matters

Monday, August 29th, 2011

The grinding stream.

An apt description of a summer that has been much more soul sucking than refreshing, hence the rather resounding silence around here.

Some of the stream has been phenomenally positive, such as my husband’s unexpected fast tracking to management duties at work and deciding to return to university for an accounting degree. I am so excited about being able to encourage and support him through online learning and am selfishly looking forward to what I can learn from the school’s platform for my own online teaching. It looks far more organized and helpful for students than anything I’ve encountered or been able to create thus far.

Some of the stream has been the normal ebb & flow of work. I’ll soon launch my third online continuing education class in as many months and am developing a 4th for the fourth month. There are some rather notable changes I’ve observed from my classes that I’ll cover in another entry this week since I’m concerned by what I see. I’m on vacation (unfortunately my husband isn’t) and actually have time to think and reflect to blog, since between the mental energy work and the next issue have taken I’ve had little of that.

Most of the stream has been a torrent with a family health crisis, the first that has happened since I’ve been a medical librarian. Many nights have involved gently getting what specific facts I can about the situation, determining where emotional levels are to be able to handle additional information, then researching to identify articles that are helpful for both the health care team and have at least some sections that are comprehensible to my very sharp family without a medical school background.

That research balance alone is a challenge, but the totally unexpected part? Teaching both my family and (through them) the health care team what is clearly stated in most of the conclusions of  articles but no one seemed to notice before now: Patient preference matters.

This insight from the one who is the strongest and most confident member of our family says it all:

When one sits in front of the highly esteemed, white coated Dr. X after kindly and informatively interacting with her and her great clinical nurse specialist for two hours and looks at a full wall of degrees and honors (Harvard Phi Beta Kappa etc) it takes a bit even for me to say “and those studies also discuss the premise that this is overtreated.”

This is all without the help of a patient navigator, and I’ve been wondering about the role medical librarians could serve as members of these teams of nurses and social workers at hospitals.  Are some of you already involved?