10 posts tagged “hypertension”

ORE Researcher Series: Tamara Kear is listening to kidney patients

Posted June 25th, 2015 by

Over the next few months, you’ll meet a few Open Research Exchange (ORE) researchers, and first up is Tamara Kear, PhD., R.N., CNS, CNN. She has over 20 years’ practice as a nurse caring for patients with kidney disease. Her research is focused on hypertension, one of the factors that can lead to a person developing kidney disease.

Tamara has developed a scale for healthcare providers that helps them learn how well a patient is doing at home and identify barriers they are experiencing in managing their hypertension. Her goal is to develop a better tool. In her video, she explains her ORE research and her philosophy that patients should be “not just informers for researchers, but actually the researchers themselves.”

What exactly is the ORE? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

Share this post on Twitter and help spread the word.


Patients as Partners: Managing High Blood Pressure questionnaire results

Posted July 1st, 2014 by

In this installment of our Patients as Partners blog series, we’re sharing results from the High Blood Pressure Management, Adherence, Attitudes and Health Behavior Instrument – whew, that’s a mouthful! Doctors and nurses can use the instrument to better understand how people manage high blood pressure at home, and can help everyone learn more about preventing life-altering conditions that result from high blood pressure, such as stroke, heart attacks, heart failure and chronic kidney disease.

Over 500 PatientsLikeMe members who are living with hypertension worked with our research partner Tamara Kear, Ph.D. R.N., CNS, CNN from Villanova University on our Open Research Exchange (ORE) platform to help make the instrument the best it can be.

From one person we heard — “I have been diagnosed with white coat syndrome. I wore a monitor for 24 hours and it was regular.” What’s that? Read on in the results.

What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

Share this post on twitter and help spread the word for hypertension.

 


Awareness, prevention, education, and family – the four goals of Men’s Health Month

Posted June 26th, 2014 by

 

This June marks the 20th anniversary of Men’s Health Month, first created by the U.S. Congress and a few other organizations in 1994. Men’s Health Month is all about heightening awareness of preventable health problems and encouraging early detection and treatment of disease among men and boys.1 This year, the campaign has four goals: awareness, prevention, education, and family.

 

 

 

Awareness: Men are at a greater risk for certain health conditions than women, besides the conditions that affect male-specific organs. This includes hypertension, high cholesterol and cancers of the skin, lungs and colon.2 But awareness isn’t just about these different conditions, it’s also about the fake treatments out there, and the Men’s Health Network has put together a great infographic that talks about counterfeit medications.

Prevention: Besides being male, many risk factors contribute to the development of these health conditions. Some of these can be managed with proper diet, exercise and other tactics, but regular screening is the best way to find a problem early. Make sure you discuss screening options with your doctor and know when and where you should go.

Education: It’s not just about raising awareness in June or even the rest of the year – it’s about teaching everyone about men’s health each and every day. As a result, the Men’s Health Network has shared a Key Health Indicators document full of information on heart disease prevalence, obesity rates and more – check it out here.

Family: If you’re a partner, brother, sister, child, cousin or even just a friend, we’re all here to support the men in our lives when they are diagnosed with a health condition.

If you’re looking to connect with others about men’s health issues, check out the forum on PatientsLikeMe – here, the men (and women) of the community chat about all things related to men’s health, and members are always happy to answer any questions you might have.

Share this post on twitter and help spread the word for men’s health.


1 http://www.menshealthmonth.org/

2 http://www.menshealthnetwork.org/library/causesofdeath.pdf


Hypertension on the Open Research Exchange- A talk with pilot researcher Tamara Kear, PhD., R.N., CNS, CNN

Posted October 17th, 2013 by

We’ve been talking about the new PatientsLikeMe Open Research Exchange on the blog over the past few weeks, and today, we’d like to introduce another one of the pilot researchers. In case you haven’t heard, our researcher partners will be using ORE to pilot, deploy, share and validate new ways to measure diseases. And PatientsLikeMe members will be able to give feedback on their work, putting them – the patients – at the center of new medical research.

tamara

Tamara’s background includes more than 20 years of practice as a nephrology nurse caring for patients with chronic kidney disease. Over the past three years, her research has focused on hypertension, one of the factors prompting a rise in kidney disease.

Tamara is developing a tool that will help practitioners see how well a patient is doing at home and identify barriers in managing hypertension. There are over 6,000 PatientsLikeMe members living with hypertension, and their feedback will be responsible for helping improve the quality of Tamara’s research. PatientsLikeMe members can give their feedback right to Tamara. They’ll be helping her create a better tool that can improve treatment for everyone living with hypertension.

We’ll be sending out invites over the next couple of weeks, so if you’re living with hypertension and want to give your feedback on Tamara’s tool, simply create a PatientsLikeMe profile and we’ll take care of the rest. If you’re already a member, sign into your profile and we’ll be sure to send you an invitation.


World Heart Day: Taking Prevention to Heart

Posted October 1st, 2012 by

Did your heart beat a little faster this weekend?  This past Saturday was World Heart Day, sponsored by the World Heart Federation.

World Heart Day 2012

Founded in 2000, this global event was created to educate the public about heart disease and stroke, the world’s leading cause of death, claiming 17.3 million lives each year.  What’s a major concern is that these numbers are rising.  By 2030, it’s expected that 23 million people will die from cardiovascular disease each year – which is more than the entire population of Australia. The main message of World Heart Day is that at least 80% of premature deaths from heart disease and stroke could be avoided if the main risk factors – tobacco, unhealthy diets and physical inactivity – are addressed.   That means that the way you live is inextricably tied to the health of your heart.

Children Are a Major Focus of World Heart Day

Children are a particular concern for the campaign as kids often have little control over their environment, lifestyle and food choices.  Unless families around the world prioritize a smoke-free home with healthy meals and regular exercise, the children of today are going to be at increased risk of cardiovascular disease later in life.  How can you help today’s kids have a strong hearts and a healthy future?  Check out the Kids on the Move Toolkit and Superheart Cartoon Leaflet for Kids to learn how you can put together a customized program for your family, school or community.

Like many health conditions, heart disease may not cross your mind until a human face is put on the disease, especially a face that looks like you or your loved ones.  That’s why the World Heart Federation is collecting personal stories via short conversations in person or by phone.  If you’ve been affected by heart disease or stroke, learn how you can participate in this global project.  Your story can help both world leaders and fellow community members focus on heart health with greater urgency.  We also encourage you to exchange support and tips with PatientsLikeMe members who have experienced a heart attack, stroke, high blood pressure, valvular heart disease or other cardiovascular conditions.

Speaking of individual stories, check out our interview with Alan, a PatientsLikeMe member who’s living with congestive heart failure (CHF).


It’s World Kidney Day. How Are Your Kidneys?

Posted March 8th, 2012 by

Today Is the Seventh Annual Observance of World Kidney Day

Today is World Kidney Day, a joint initiative of the International Society of Nephrology (ISN) and the International Federation of Kidney Foundations (IFKF).

Since 2006, World Kidney Day has been raising awareness of the importance of our kidneys to our overall health.  For example, did you know that it’s our kidneys’ job to remove toxins and excess water from the body?  Or that these two organs – roughly the size of a fist each – help regulate our blood pressure, blood cell production and bone health?

It’s no wonder then that humans can’t survive without kidneys, which brings us to this year’s World Kidney Day theme:  the need for life-saving organ donations and kidney transplants.  Without them, those with chronic kidney disease who progress to complete kidney failure (aka end stage renal disease) have a bleak prognosis.  Unfortunately, the need for transplantation is growing worldwide due to the increasing prevalence of diabetes and high blood pressure, the main causes of kidney disease.

A Kidney Transplant Saves Lives for Those with End Stage Renal Disease

As a result, prevention is inextricably linked to being healthy in general:  maintaining a healthy weight, exercising and eating right.  Here in the US – where approximately 26 million Americans have chronic kidney disease, and millions more are at risk – the National Kidney Foundation has launched a campaign featuring legendary restaurateur B. Smith.  Check out the video below to learn about the risk factors for kidney disease and how you can reduce them with simple actions such as reducing salt and fat intake, quitting smoking and replacing soda with water.

Are you living with high blood pressure, diabetes or chronic kidney disease?  Connect with others like you to share experiences, support and advice.  At PatientsLikeMe, we have 2,700+ patients with hypertension, 2,700+ patients with type 2 diabetes and 300+ patients with chronic kidney disease.  In addition, 1,900+ members have undergone – or are awaiting – a kidney transplant, while 50+ others are on hemodialysis or peritoneal dialysis.  Add your own story and gain insight from this wealth of real-world knowledge.


Medication Non-Adherence: The Costs and Complexities

Posted November 7th, 2011 by

On October 24-25th, PatientsLikeMe attended the 8th Annual Patient Adherence, Communication and Engagement (PACE) Conference in Philadelphia. The event focused on how the healthcare industry can deliver measurable improvements in patient adherence (i.e., taking medications as prescribed by your doctor).  Put simply, how can we help patients like you take the correct dosages at the correct times?

2011 Patient Engagement, Communication and Adherence (PACE) Conference

Why does this topic merit its own conference? Well, as we learned at PACE, medication non-adherence costs more than $300 billion every year in the US alone. You read that right. And this staggering amount is comprised of more than just hospitalization and emergency room costs. It also includes things like lost employee productivity and the cost for less optimal patient outcomes. Essentially, think of it as $300 billion the US could be saving each year – but currently is spending – in the midst of an economic downturn.

Here are some of the other noteworthy takeaways:

  • A key factor in non-adherence is that patients may frequently have an incorrect understanding or an unrealistic expectation from their doctor of what their medications will do for them.
  • Recently passed US legislation is attempting to change the way doctors are paid. The new law provides financial incentives for health plans to implement quality measures that hold doctors accountable for impacting patient outcomes.
  • Many new solutions, such as telemedicine and the patient-centered medical home, are being piloted and studied. The goal is to learn how technology can impact patient outcomes via medication adherence services and remote medical care.
  • To remain relevant to patients, biopharmaceutical companies now recognize that they must incorporate the voice and experience of the patient into their decision-making processes.

PatientsLikeMe Chief Marketing Officer and Head of Business Development David S. Williams III

Last but not least, our very own Chief Marketing Officer and Head of Business Development David S. Williams III spoke about the work PatientsLikeMe is doing around medication adherence. Specifically, he focused on patient-to-patient interaction as an influential driver of medication adherence and how we can give patients the tools they need to (1) understand how their medication is working for them and (2) hold each other accountable for following their doctors’ instructions.

Do you believe connecting with – and learning from – other patients is critical to adherence?  Share your thoughts in the comments section.

PatientsLikeMe member cfidyk


Get Healthy for Good: An Interview with Catie Coman of the National Psoriasis Foundation

Posted October 7th, 2011 by

Catie Coman, Director of Communications, National Psoriasis Foundation

In August, we recognized Psoriasis Awareness Month on our blog and shared some facts and figures about this autoimmune disease, which affects 7.5 million Americans. One of the statistics we shared is that psoriasis often occurs in conjunction with other serious health conditions, including diabetes, hypertension, heart attack and obesity.

What these conditions share is that they can often be improved by reaching an ideal body weight. But losing weight – and maintaining it – is easier said than done. That’s why the National Psoriasis Foundation has launched the Healthy for Good campaign. Here’s what Catie Coman, Director of Communications at the National Psoriasis Foundation, tells us about this new online program.

1. What is Healthy for Good, and why should patients join in?

Healthy for Good (www.healthyforgood.org) is program designed to help people lose weight, while raising funds for a cure for psoriasis and psoriatic arthritis. It’s unique in that is uses a public platform and the fundraising tactic of “friends asking friends” to help people reach their goals.

Forty percent of people with psoriasis have metabolic syndrome, a cluster of conditions such as high blood pressure, diabetes and abdominal obesity. By joining Healthy for Good, they’ll get tools to stay motivated, lose weight and reduce their risk factors for these associated conditions. They’ll also be able to support research to find a cure for psoriatic diseases.

2. How will Healthy for Good reduce the risk factors for these conditions?

Healthy for Good may reduce the risk factors for these other serious conditions by providing participants with a platform to lose weight safely and set achievable goals. Healthy for Good supports a weight loss goal of up to two pounds per week. Participants will make a commitment to eat right and exercise—and reduce their risk for other serious diseases while they get healthy.

3. How is this program different from other health and fitness campaigns?

First, it gives people a chance to go public. Research shows that people are far more likely to achieve a goal when they put their reputation on the line—by publicly announcing their intentions. Healthy for Good helps people be accountable by giving them a platform to broadcast their commitment.

Also, it will help people stick to their resolution by asking others to support their efforts. For every pound that someone commits to lose, they will ask loved ones to donate $1, $5, $10 or more to help the National Psoriasis Foundation find a cure for psoriasis and psoriatic arthritis.

Participants will track their progress each week, and the Healthy for Good tracker will calculate their overall progress toward their goal. In order to help people stay motivated, each person who meets their weight-loss and fundraising goals will be entered to win prizes.

4.  Is Healthy for Good only available to psoriasis patients or can anyone join?

Anyone can join Healthy for Good. People without psoriasis and psoriatic arthritis can use this program to overcome weight loss obstacles and lose the pounds, while helping others at the same time. And it’s a great way for people with psoriasis and psoriatic arthritis to get healthy, reduce their risk of other serious associated diseases and raise funds to find a cure.

PatientsLikeMe member mcotter



Be of Good Heart Today

Posted September 29th, 2011 by

Today, September 29th, is World Heart Day. Sponsored by the World Heart Federation, this annual event was started in 2000 to raise awareness about heart disease and stroke, the world’s leading cause of death with more than 17.1 million lives lost each year. All around the globe, activities such as talks, screenings, walks, concerts and sporting events have been organized for today.

World Heart Day 2011

One of the main goals of World Heart Day is to educate the public about the fact that at least 80% of premature deaths from heart disease and stroke could be avoided. All it takes is controlling the three main risk factors: tobacco use, unhealthy diets and physical inactivity. Beyond those, another related risk factor is high cholesterol, which was the subject of yesterday’s blog post.

Here at PatientsLikeMe, a number of patients report cardiovascular conditions as well as conditions that put them at high risk for heart disease or stroke. They include:

If you’ve been diagnosed with one of these conditions, join our growing community and connect with patients like you today. Have a loved one who’s at risk? Educate yourself about the warning signs of a heart attack or stroke. According to the World Heart Federation, over 70 percent of all cardiac and breathing emergencies occur in the home when a family member is present and available to help a victim.


See What Other Patients Are Saying About Metoprolol Succ ER

Posted April 2nd, 2011 by

Metoprolol Succ ER (the common abbreviation for Metoprolol Succinate ER and a generic form of Toprol XL) is an extended release formulation of the drug metoprolol, which is used for the treatment of angina or hypertension and to reduce mortality/hospitalization in patients with heart failure who are already receiving cardiac and diuretic medications.

At PatientsLikeMe, where more than 120,000 patients are sharing their experiences with conditions, symptoms, treatments and more, 185 patients report using Metoprolol Succ ER.  What can we learn from these patients’ experiences?  Quite a bit, actually, thanks to PatientsLikeMe’s unique data-sharing platform.  For example, the most commonly reported duration amongst current users is two years or more, while the most commonly reported dosage at PatientsLikeMe is 50mg daily.

Wondering about Metoprolol Succ ER side effects?  Some of the commonly reported side effects include loss of energy, fatigue, excessive daytime drowsiness and weight gain.  Check out the 29 treatment evaluations of Metoprolol Succ ER submitted by our patients to gain even more insight.  For example, the following are several tips submitted by Metroprolol Succ ER users on their evaluations:

  • “Remember to get up slowly.  [This drug] has been making me very light headed and dizzy.  Also be sure to hydrate frequently.”
  • “Try to take it everyday at the same time – I am really bad at this, so I’ve started taking at night.”
  • “When I miss a dose or two, I get an instant, awful, pounding headache on the top of my head, as my blood pressure goes through the roof, and my ears turn beet red and I can literally feel the heat coming off of them.”
  • “Be prepared to feel cold physically when taking this medication. Dress warmly even when in air conditioning.”

JOIN PATIENTSLIKEME TODAY

Have you taken Metoprolol Succ ERJoin PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay to exchange advice and support, research common treatments and learn from other patients like you.

Join PatientsLikeMe