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Patient Centered Healthcare
Articles and discussions on patient centered healthcare, patient education, patient awareness, patient engagement... Relevant to Hospitals, Physicians, Healthcare Organizations, Pharma, Insurance
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Patient Engagement Starts with Patient Education

Patient Engagement Starts with Patient Education | Patient Centered Healthcare | Scoop.it

If a patient does not have a solid understanding, they cannot be engaged.  Patient engagement must begin with education.  When attempting to educate a patient, many factors will come into play.  The level of health literacy, the learning style of the patient, the ability of the physician to explain and the quality of patient handout materials are all factors in how thorough of an understanding the patient will have when they leave.

Health literacy is an issue that spans across all demographics and intelligence levels.  It is the ability to read and understand information about your health and make decisions about it.  Health literacy is critical in engaging patients and motivating them to practice self-management of chronic diseases, medication adherence and care transition.  Because of time constraints, it is common for physicians to provide printed handouts to patients in lieu of offering an extensive explanation.  This leaves a substantial amount of patients without a conclusive understanding of their responsibility to manage their health.

People have different learning styles.  Some individuals learn best when being spoken to, others will need to be shown and some just have to do it themselves.   Educating patients with their preferred learning style helps ensure their engagement and understanding of the material.  A physician who struggles with communicating information in terms the patient can understand can even turn off patients with auditory learning styles.  Providing materials for the patient to take home is crucial in ensuring they have a comprehensive understanding of their responsibilities.

Many patients will nod in assurance they understand, but leave without any knowledge of even a simple required task such as when to take their medication.  Many patients are too anxious and confused to ask valuable questions at the physician’s office. This often leads to a preventable readmission into the hospital.  Providing materials for the patient to view at home can lead to a dramatic reduction in readmission rates, but they must be in an engaging format.

Ideally, physicians should offer a variety of materials that address multiple learning styles, various levels of health literacy and can evoke emotion.  Printed health education materials will be ideal for many, but videos will help bridge educational and language barriers, especially with complex situations.  Having a variety of tools that work to both engage and educate the patient, allows them to make better decisions regarding their health.

 

 

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Patients 2.0: Teach Your Patients to Engage

Patients 2.0: Teach Your Patients to Engage | Patient Centered Healthcare | Scoop.it

Meaningful use stage 2 is rapidly approaching and this time patient engagement is key.  Yes, earlier stages of meaningful use required physicians to provide Patient Health Records (PHRs) to patients…but not to persuade patients to make use of it.  Stage 2 requires eligible professionals (physicians) to provide patients with online access to their health-related information within 4 business days. Also, at least 5% of the patients must have viewed, downloaded, or transmitted their information to a 3rd party during the reporting period.  There is no doubt patient engagement is the key for success in this stage.  As you can see, patients will be going through many changes in the way healthcare is provided and their adjustment to these changes must be supported and guided by their physicians.  Even with all the changes made by healthcare providers, success will not be reached without patient buy in.  Physicians must encourage and engage patients to use the new technologies, developing them into “patients 2.0”.

But the physicians are not the only responsible parties here; the design of PHRs provided to patients will have a significant impact on patient engagement.  PHR developers must always have in mind that patients need to be provided with easy-to-use tools that not only makes health-related information available, but that triggers them to become engaged in their health.  Let’s be honest, no one would like to use a PHR where the patient needs to do all the work, these tools need to be developed so that they are easy enough to be used and smart and persuasive enough to capture the attention of every patient.  Physicians need to be careful in the selection of the PHR they would be providing for patients. Providing PHRs will no longer meet the requirement; now patients must actually use them.  In order to achieve this, PHRs must provide some value to patients.

Clearly, the rate at which the patient will become engaged in their wellness will depend on the effectiveness of the PHRs available and recommended by physicians, as well as the education and encouragement patients will receive from their healthcare providers.  We have known for quite awhile that patient engagement is vital for the improvement of healthcare services and the success of Health IT.   Naturally, many challenges await us, but many efforts are also underway to surpass these challenges. Patient engagement has been OVERDUE and now it’s time to develop patients 2.0.

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5 Ways to Best Utilize Tablets at Your Medical Facility

5 Ways to Best Utilize Tablets at Your Medical Facility | Patient Centered Healthcare | Scoop.it

Here are some of the most practical uses of tablets in the medical field today:


1. Mobile Imaging

Tablets in hospitals, doctor’s offices and other medical facilities allow staff to access reference copies of X-Rays, PACS images, ultrasounds and more. This technology allows for quicker comparative studies between two patient visits, which helps deliver more accurate and timely results for patients when medical staff is more equipped to perform their duties.

Tools like Mobisante allow medical professionals to connect a ultrasound probe to a mobile device or tablet to conduct ultrasounds in a much more cost effective and mobile format. The Mobisante tool also enables providers to use the system for prostate and gynecology imaging as well.

When more basic imaging is conducted on tablets, film costs and technical labor expenses are also reduced, which helps save the organization money as a whole. Reduced costs and more efficient patient care is always a plus for any medical facility looking to reduce their bottom line.


2. Practice Management

Tablets now allow healthcare organizations access to scheduling and resource planning information from anywhere, as they move about their facility. This is an added convenience for medical professionals who no longer have to synch with other facilities or departments since most of the necessary information needed to schedule patients visits and find the information they are looking for is right at the palm of their hands.

These devices also help streamline the process of medical billing to ensure it is more accurate and timely across the organization. With this accuracy, comes more complete and efficient insurance claims filing and processing to an already innately complex system.


3. Clinical Documentation

Improved accuracy of patient data is an extremely important use of tablets because they help the entire healthcare system remain consistent and organized across different facilities.

This is beneficial to patients moving between healthcare facilities because all their necessary documentations is available wherever they need it to be, as well as for staff who can quickly access this information to administer treatment to patients.

By nature, consolidating information that’s easily accessible on tablets can help eliminate the entry of redundant data. The less redundancies in healthcare records the better for the continued growth of effective healthcare and better treatment and services for patients.

The speed at which this information can be access by medical professionals obviously helps attribute to the increase in patient care, since there is more time to focus on patients as opposed to the technology used to assist them.


4. Patient Education

The ability to easily educate patients is important for their buy-in and overall understanding of their condition, injury or ailment. Tablets make educating patients with videos, animations, diagrams and other visuals easy from their bedside.

Patient education is important because it allows the patient to better understand what’s happening to them medically, which will ideally help them better explain how they are feeling and reacting to treatment when they speak with medical professionals.

Tablets make patient education mobile and more effective due to the compelling power of visuals which help drive home the understanding of a concept far better than just words on their own could.


5. Computerized Drug Order Entry

CPOE or Computerized Physician Order Entry is a system that allows direct entry of medical orders by the person with the licensure and privileges to do so like a practicing physician or surgeon. Directly entering prescriptions and other medical orders into a tablet has the benefit of reducing errors that are typically found in hand-written orders, which can be an extremely serious issue if not properly addressed.

One of the greatest benefits of tablets giving medical practitioners greater access to CPOE is the fact that all of their other support tools like clinical documentation, practice management and mobile imaging can be found on the same device for better collaboration across systems.

With the use of CPOE on a tablet there is a reduced need to clarify information prior to prescription fulfillment, which once again helps both protect the patient and save much needed time for staff.

Tablets offer easy access to up to the minute updates on drug-to-drug and drug-to-allergy contraindications to again ensure that your patients are protected and your staff has up to the minute real time information on how to protect them.

Lastly, time is saved across the board because prescriptions are processed right away from the tablet increasing the speed and efficiency of the entire experience for both patients and staff.

 

 

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Information card about doctor improves patient satisfaction

Information card about doctor improves patient satisfaction | Patient Centered Healthcare | Scoop.it

Knowing who your doctor is - and a couple of facts about that person - may go a long way toward improving patient satisfaction, according to a Vanderbilt study in the Journal of Orthopaedic Trauma.

Faced with the knowledge that between 82 percent and 90 percent of medical patients are unable to correctly name their treating physician following inpatient admission, orthopaedic trauma surgeon Alex Jahangir, M.D., and his Vanderbilt colleagues studied the effects of giving a randomized group of patients a simple biosketch card about their doctor.

What they learned is that patient satisfaction scores for the group receiving the card were 22 percent higher than those who did not receive the card.

"I think, in general, people recover better when they are more comfortable with the care they are receiving," said Jahangir, associate professor of Orthopaedic Surgery and Rehabilitation. "So it matters to patients and physicians who want a quick recovery, and now because of provisions in the Affordable Care Act, it matters to the institution because there are millions of dollars that can be at risk if patient satisfaction is low."

A percentage of Medicare reimbursement dollars - beginning with 1 percent in FY 2013 and growing to 2 percent by 2017 - is linked to patient satisfaction scores from the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) questions answered by patients, Jahangir said. Patient satisfaction determines 30 percent of performance scores for incentive payments, while clinical measures make up the other 70 percent.

"Whether we like it or not the reality of the world is that we are seeing more of an emphasis on not just outcomes, but the satisfaction of the care we deliver," Jahangir said. "So, while we should always strive for excellent outcomes and excellent care, we also can't forget that there is a human side of medicine and we need to do what we can to make sure that our patients are comfortable with the care that we are giving them. I believe it is important for us as physicians to really lead this charge of improving our patient's experience."

The Vanderbilt pilot study enrolled 212 randomized patients. One hundred received biosketch cards discreetly placed by a third party; 112 did not get cards. The patients were essentially the same in all variables, including injury type, insurance status and education.

To accurately gauge patient satisfaction, patients in the Vanderbilt study were contacted within two weeks of discharge to answer those same HCAHPS questions relating to their care.

In the end, the group who received a biosketch card had patient satisfaction scores 22 percent higher than the group who did not receive a biosketch card.

Each of the six physicians in Vanderbilt's Division of Orthopaedic Trauma participated in the study and, since that time, the nurse practitioners are now giving out cards to all patients.

"This is an easy, cheap intervention," Jahangir said. "As health care reimbursement shifts to reward quality rather than quantity, it is important to identify ways to improve the patient experience. This intervention is literally something that doesn't even cost a nickel but improves a patient's experience, and hopefully their recovery - metrics that matter not only to the institution, but to patients and their physicians."

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Only 12% of Americans Are "Health Literate"

Only 12% of Americans Are "Health Literate" | Patient Centered Healthcare | Scoop.it

The United States has an overall literacy rate of 99%, according to the CIA Factbook, but a health literacy rate of only 12% according to the National Assessment of Adult Literacy.

In addition, according to the U.S. Department of Health and Human Services, roughly nine out of ten Americans are not “health literate.” Health literacy is a term that describes “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.”

So, according to the HHS, if you are proficient in health literacy, you can calculate cholesterol levels, measure medications, understand nutrition labels, choose between health plans, and compare prescription drug coverage. Health literacy is about your ability to find out what’s wrong with you, knowing where to go, and then knowing what to do with the information given to you.

While the wealth of providers in the United States (e.g. clinics, urgent cares, emergency departments, community health centers and retail clinics) gives Americans a myriad of options to choose from, it also contributes to the confusion many Americans may feel when making health care decisions. When you add jargon-heavy medical forms, complex medication regimens, and health plans to the mix, it’s easy to see why most Americans struggle to make the “appropriate health care decisions,” mentioned by the HHS.

This paradox of health care choice may contribute to low health literacy rates, as better health literacy often translates to better health. The HHS website states, “Low literacy has been linked to poor health outcomes such as higher rates of hospitalization and less frequent use of preventive services,” and the American Medical Association says that poor health literacy is “a stronger predictor of a person’s health than age, income, employment status, education level and race.”

iTriage is a mobile and web application developed by two ER physicians, Drs. Peter Hudson and Wayne Guerra, that improves healthcare literacy and enables patients to make better healthcare decisions. Its unique Symptom-to-Provider pathway helps patients answer two questions: “What could be wrong?” and “Where should I go for treatment?” “iTriage helps people better understand their symptoms and the medical conditions that may be causing them,” says Guerra. “The application then directs them to the appropriate facility or provider, whether that is an urgent care clinic, retail clinic, emergency department or physician.”

 

 

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Diabetics have more freedom to manage disease

Diabetics have more freedom to manage disease | Patient Centered Healthcare | Scoop.it

 This column is written by health care experts and is committed to help improve the health of all San Diegans with preventative advice.

Ask anyone with diabetes and they will probably tell you the process of monitoring glucose levels can be quite a chore: Pricking your finger to draw blood, putting the blood on a test strip and inserting it in a glucose meter. People with type 1 diabetes have to do this several times a day, especially before each meal.

Yet monitoring blood sugar levels is important to ensuring proper management of the disease. Type 1 diabetes occurs when the body makes little or no insulin and is often due to immune destruction of the insulin producing part of the pancreas. As a result the body cannot convert sugar into energy and daily insulin replacement must be used. With multiple daily insulin injections, people with type 1 diabetes can live a long, healthy life.

Fortunately, modern technology gives diabetics the freedom and convenience to manage their disease with more accurate readings and immediate results to improve their health outcomes.

Today’s blood glucose meters are compact, use a tiny volume of blood and can store hundreds of results that can be uploaded to a computer. They can connect directly to smartphones, or transmit data wirelessly to a secure website, allowing instant sharing of the blood glucose results with a health care professional. From there, the provider can analyze the data and make treatment recommendations remotely — cutting down on office visits or wait times for data records to be submitted by fax or email.

Real-time, continuous glucose monitoring systems, or RT-CGM, automatically measures glucose levels every few minutes, and display the results on a cell phone size wireless receiver. RT-CGM shows the patterns of glucose levels and can be programmed to alarm when glucose levels are too high or low, especially during sleep. This helps to improve detection of hypoglycemia. However RT-CGM is not as accurate as standard blood glucose meters, so any treatment decision (eating food or taking more insulin to counteract low or high blood sugars, respectively) has to be made from glucose readings using finger prick tests.

Although the delivery of insulin has progressed, type 1 diabetics are still required to give multiple daily injections. Insulin pumps can deliver insulin through a tiny plastic tube inserted under the skin with surge doses at mealtime, closely mimicking the body’s normal release of insulin. Newer disposable matchbox sized patch pumps are self contained insulin delivery units that adhere to the skin where the infusion tube is inserted and is programmed with a wireless remote control. Although using an insulin pump may help improve glucose control in some individuals, it is not suitable for all people with type 1 diabetes and can be dangerous if used improperly.

Since the available insulin pumps cannot function as an artificial pancreas, pump users have to continue with frequent blood glucose monitoring, estimation of carbohydrate intake and programming insulin dose delivery.

A recent FDA approved integrated insulin pump and CGM system with a threshold suspend feature is the first realistic step toward creating an artificial pancreas. The threshold suspend feature automatically stops insulin delivery when sensor glucose values reach a preset low threshold, thereby avoiding hypoglycemia. Future technologies may enable additional preset automation of insulin delivery based on specific glucose variations.

Currently there is no cure for type 1 diabetes, but the replacement of insulin producing cells using either a pancreas or islet cell transplant is a close second. However, these procedures carry considerable health risks, including death, and are only appropriate for a handful of individuals who will require life-long immune suppressive medications to prevent rejection of the transplanted organ.

 

 

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Hospitals Grapple with Patient Engagement

Hospitals Grapple with Patient Engagement | Patient Centered Healthcare | Scoop.it

Hospitals are grappling with new, reform-oriented imperatives to "engage" patients in their own care.

The Patient Protection and Affordable Care Act requires hospitals to prevent readmissions following patient discharge for several common health conditions, at the risk of Medicare penalties. In the just-beginning second stage of the $27 billion federal incentive program for "meaningful use" of electronic health records, providers must convince at least 5 percent of their patients to communicate electronically about their care, a more daunting task than the number makes it sound.

 

Outcomes-based reimbursement provides additional incentive for hospitals and other providers deliver care in teams, with the patient at the center of information flow and decision-making.

Tuesday morning at the U.S. News Hospital of Tomorrow Forum, two New York City providers discussed how they are adapting to this new dynamic.

New York-Presbyterian Hospital offers its patients access to their own records and other online services through a portal called MyNYP. There, they can see discharge summaries and instructions, make follow-up appointments, pay bills and send secure messages to their doctors, said Senior Vice President and Chief Information Officer Aurelia Boyer. A new feature is the ability for patients to search for clinical trials they might be eligible for based their specific conditions.

 

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Is patient engagement the reason premature births are dropping?

Is patient engagement the reason premature births are dropping? | Patient Centered Healthcare | Scoop.it
Premature births have dropped six consecutive years. Some Ohio hospitals credit patient engagement with at-risk mothers, among other approaches.
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Making Patient Experience a Priority [INFOGRAPHIC]

Making Patient Experience a Priority [INFOGRAPHIC] | Patient Centered Healthcare | Scoop.it

Strong patient engagement leads to lower readmissions, increased reimbursements, and a better quality of life for the patient.

 

Key Takeaways

- 36% of patients don't get the lab tests, specialist referrals, or follow-up care they need

- 1 in 5 Medicare patients are readmitted within 30 days

- 64% of doctors say that non-clinical paperwork has caused them to spend less time with patients

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12 Tips for Improving Communication With Your Doctor

12 Tips for Improving Communication With Your Doctor | Patient Centered Healthcare | Scoop.it

The importance of having good communication with your doctor is often emphasized. But it doesn't always come easy -- you may have to work at it. It actually takes a conscious effort. Don't wait for that effort to come from your doctor -- it's your responsibility too. Here are a dozen tips for improving communication with your doctor.

 

As you work your way through these tips, think about how each will help you understand your doctor, help your doctor understand you -- and ultimately promote the feeling that you are on the same team.

 

A Dozen Tips for Improving Communication

1. Be prepared for your doctor visit

2. Don't just listen

3. Don't be shy

4. Talk symptoms, not theories

5. Be honest

6. Be open to your doctor's advice

7. Understand your goals

8. Ask for a diagram or illustration

9. Respect the time

10. Review your medication list and needed refills

11. Summarize before leaving the office

12. Thank your doctor

 

There is one last tip -- let's call it a bonus tip. If you know ahead of time that you have many questions for your doctor and that it will likely be a long visit -- call up and book it ahead of time. Let your doctor's staff know you will need extra time. Don't just spring it on them when you show up. They will appreciate your effort not to delay your doctor's schedule. A healthy and positive doctor-patient relationship is based on mutual respect, mutual understanding, and consideration.

 

 

 

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Why you should support storytelling in healthcare and this Medstartr project

Why you should support storytelling in healthcare and this Medstartr project | Patient Centered Healthcare | Scoop.it

Communication is an evergreen problem in healthcare. Whether the problem is a patient with low health literacy or a doctor who can’t explain complicated subjects in a simple way, important messages do not get from one person to the other.

 

There have been many efforts to get doctors to communicate in more direct, less jargony way. Now it’s time to help patients learn these same skills.

 

Imagine if a patient could explain his condition, his daily challenges, and even his emotional state to doctors in a clear, calm, specific way. Learning the skills of storytelling could change the entire dynamic of the exam room.

 

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10 patient groups most likely to be mobile health users - Manhattan Research

10 patient groups most likely to be mobile health users - Manhattan Research | Patient Centered Healthcare | Scoop.it

The firm found that adoption of mobile solutions varied among patient groups. These patient groups were the ones most likely to report using mobile health solutions:

 

1. Cystic fibrosis

2. Growth hormone deficiency

3. Acne

4. ADD/ADHD

5. Hepatitis C

6. Migraine

7. Crohn’s disease

8. Chronic kidney disease

9. Generalized anxiety disorder

10. Bipolar disorder

 

It’s not surprising to see many chronic conditions on the list. It is very surprising, however, not to see conditions like diabetes, asthma and sleep disorders. While Manhattan Research didn’t spell out exactly how they pulled this list together, it noted that it used data from adults in condition groups with at least 50 respondents.

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Gardening, Housework May Help Boost Your Heart Health

Gardening, Housework May Help Boost Your Heart Health | Patient Centered Healthcare | Scoop.it

Activities such as gardening, do-it-yourself projects and housework may be as good as formal exercise when it comes to reducing the risk for heart attack and stroke, Swedish researchers say.

For people 60 and older, just keeping busy with daily activities can reduce the risk of cardiovascular problems by nearly 30 percent and even prolong life, they added.

Being on your feet and active cuts the time spent sitting around, pointed out lead researcher Elin Ekblom-Bak, of the Swedish School of Sport and Health Sciences and the Karolinska Institute, in Stockholm.

 

"Sitting is mainly replacing time you spend in daily activity and vice versa," Ekblom-Bak said. A recent study found long periods of sitting actually increased the risk for diabetes, cardiovascular disease and death, she noted.

"The results of this study showed that activities of daily life are as important as regular intentional exercise for older adults for cardiovascular health and longevity," she said.

But that doesn't mean formal exercise isn't important. "We saw that those who exercised regularly and that also had a daily physically active life had the lowest risk of all," Ekblom-Bak explained.

The time people spend exercising, however, is only a small part of the day, which leaves a lot of time for daily activities or sitting, she added.

 

For the new study, researchers collected data on more than 3,800 men and women in Sweden who were born in 1937 and 1938. Participants were asked about their lifestyle, which included information on their diet, whether they smoked or drank alcohol, and how physically active they were.

The participants were also asked how often they took part in activities, such as gardening, do-it-yourself projects, car maintenance and blackberry picking over the past year. They were also asked about any exercise they did.

 

To see how heart-healthy they were, the researchers examined the participants and took blood samples to assess levels of fat and sugar. They also checked for high levels of blood-clotting factor, which is linked to a raised heart attack and stroke risk.

During more than 12 years of follow-up, 476 of the participants died from or experienced a first heart attack or stroke, and 383 died from other various causes.

People whose daily activities kept them moving reduced their risk of a heart attack or stroke by 27 percent and the risk of dying from any cause by 30 percent, compared to people who spent the least amount of time on their feet.

 

"Promoting daily life activities is as important as recommending regular exercise for older adults for cardiovascular health and longevity," Ekblom-Bak said.

"This is particularly important for older adults as they tend to spend a greater portion of their active day performing non-exercise physical activity, as they often find it difficult to achieve recommended exercise intensity levels," she said.

The report was published online Oct. 28 in the British Journal of Sports Medicine.

Traditional notions of retirement often don't support continued physical activity at this stage of life, a U.S. expert said.

 

"It is almost expected that as we age, we move less," said Samantha Heller, a senior clinical nutritionist and exercise physiologist at NYU Langone Medical Center, in New York City.

"Retirement, a patient told me, is for sitting around, resting and watching TV," she said. "Unfortunately, sedentary lifestyles now range across all ages with the same unhealthy results: increased risk for diseases such as cardiovascular disease, metabolic syndrome and certain cancers."

The human body is designed to be moving a good portion of the day, Heller said. "The less one physically moves, the less they are able to move," she said.

 

Regular physical activities such as house cleaning, gardening, lawn care and climbing stairs help keep the body mobile and strong, Heller said.

"You can burn up to six times as much energy per minute when house cleaning as you do when you are sitting still. People of all ages need to be encouraged to get up off the couch and turn off the computer and TV and move," she said.

Heller said there are simple ways to add more physical activity into the day, such as the following:

Standing up when talking on the phone.Marching in place when watching TV -- at least during the commercials.Getting up from your desk every hour and doing jumping jacks, knee lifts or knee bends for three to five minutes.Climbing a flight of stairs every few hours.Vacuuming the house.Mopping the floor.

 

Another expert described the physical fallout of being sedentary.

Dr. Gregg Fonarow, a professor of cardiology at the University of California, Los Angeles, said sitting for too long may have adverse effects including burning fewer calories, and increasing insulin resistance and fats in the blood.

"Greater time spent in non-exercise physical activities can potentially counter these effects," Fonarow said. "These findings further emphasize the importance of decreasing sedentary time and encouraging everyday regular non-exercise physical activity to improve cardiovascular health."

Although the study found an association between being active around the house and reduced heart risk, it did not establish a cause-and-effect relationship.

 

 

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Ask, Don’t Tell — Mobile Phones to Improve HIV Care

Ask, Don’t Tell — Mobile Phones to Improve HIV Care | Patient Centered Healthcare | Scoop.it

Almost all health care is voluntary: patients choose when to engage in care, when to take their medicine (if they choose to take it), and whether to return for follow-up visits. In human immunodeficiency virus (HIV) infection and other chronic diseases, the benefits of medication adherence for the patient and public health are tremendous. Mobile health — the use of mobile devices such as cell phones to improve health outcomes and health care services — has been shown to be effective in promoting adherence to treatment for HIV infection. The World Health Organization has strongly recommended text messaging as a reminder tool to increase adherence to antiretroviral therapy.

However, the potential of mobile health is much greater than just reminders. A randomized, controlled trial in Kenya that showed the effectiveness of text messaging to improve outcomes of HIV treatment used weekly interactive check-ins to ask patients how they were doing, with follow-up phone calls to those reporting a problem.1 This model involved a weekly text message to patients with a single word — “Mambo?” (“How are you?”). The intention was to promote self-care rather than issue timed medication reminders. The patients reported that they felt cared for and supported. Clinic staff indicated that the intervention made their work more effective and efficient, since they could focus on patients who needed and wanted their help. Text-messaging services with frequent medication reminders increase costs and result in user fatigue.2 In separate trials, neither medication alarm devices3 nor daily text-message reminders4 improved adherence.

The provision of health information through mobile phones offers the opportunity to improve health literacy. But does it translate into improved adherence? Although this may be possible, effectiveness has not yet been shown in controlled studies. A randomized, controlled trial showed that longer motivational text messages with words of encouragement were no more effective at improving adherence than short messages.4 A separate trial of motivational messaging showed no effect on adherence.5 Imagine that patients are feeling sick, and a unidirectional text-messaging service keeps telling them they are important and cared for. It is better to show patients you care, rather than just tell them.

My experience and interpretation of the evidence support an “Ask, don’t tell” approach. Although patients may eventually tire of being reminded and told things they had not specifically asked about, they do not seem to tire of being asked how they are doing. Instead, they feel cared for. Patients also do not seem to tire of having access to their health care providers in times of need; this is the true power of having their health in their own hands through their mobile phones.

 

 

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Promoting Patient Education with Social Media

Promoting Patient Education with Social Media | Patient Centered Healthcare | Scoop.it

Kevin Pho, MD, is perhaps the most recognized physician voice in social media. Pho, more commonly known as KevinMD, has an online audience of more than 100,000 between his blog, Facebook, Twitter and RSS (really simple syndication) feed.

A primary care physician at Nashua (N.H.) Medical Group, Pho recently spoke with Curaspan Connections about how social media has emerged as a tool to help health-care providers communicate with their patients.

Curaspan: Why should health-care providers care about social media?

Kevin Pho: There is a tremendous opportunity to communicate information that is helpful to patients. With social media, physicians now have a platform to correct some of the misconceptions that may be out there in a way that reaches a wide patient audience. I look at this as an opportunity for data curation. We’re able to pull aside the curtain and show what’s behind some of the stories patients may be hearing. Clearly, social media is changing the way patients receive information.

How does a provider get started?

You can start with a blog, like I did, and then use some of the newer applications like Facebook and Twitter to drive awareness and traffic to your blog. I think if someone is going to get started, he would need to be someone who is passionate about what is happening in the health-care space and willing to take the time to get the information out there.

Is it time-consuming?

It takes a commitment when you get up at 4 a.m. every day. I spend two to three hours a day on it, very early, then again at night. That’s why so few doctors are actively blogging. Who has the time? But I look at this as building a digital footprint, preparing for the future. When I first started blogging in 2004, physician blogs were in their infancy. But you’re starting to see more of a physician voice now. I’m glad to have been out there early.

What inspired you to start your blog?

Patient education. There’s a lot of misinformation out there, and I think it’s important to steer patients to the right information. My patients would see something on TV and wonder, “How does this affect me?” They’d see a new study and ask the same question. Not everything was being reported, and there were questions. I recognized there was a huge opportunity to pull aside the curtain, and I wanted to do something about it.

There are a lot of things that can be fixed with health care, and physicians need a platform to express themselves. The good news is that we’re now parlaying this from a social media platform to mainstream media.

You were interviewed by CBS Evening News. What kind of impact has that had?

That really legitimized the voice of the physician blogger and gave us credibility. In the past, sources of information were only academic medical centers. This legitimized what we’re doing and made it trustworthy. I think there’s a recognition now that the physician blogging voice is a good source of information.

Can you share some specific issues you’ve addressed?

Back in 2004, when Merck recalled Vioxx, I got a lot of calls from patients asking “What do I do?” This got me thinking that there were a lot of questions out there and the news was changing every day. I thought there was a need for a physician voice. And as you look around today, there are new sets of questions.

Health-care reform. How does it affect doctors? How does it affect patients? There is such a wide spectrum of opinions, and I present both sides. Another area of concern for patients was the U.S. Preventive Services Task Force recommendation about the timing of breast cancer screening. I wanted to present the facts in the right context.

What I do is guide patients to reputable sources of information. I can’t give out personal medical advice. My goal is to help educate.

Has your notoriety helped attract new patients?

The feedback has been very positive. We’re a hospital-owned practice and I’ve been written up in the local newspaper. I don’t directly use my blog to market the practice but locally, if someone is new to town and types “New Hampshire doctors” into search, I’m there. This is not the majority, but it’s laying groundwork for the future.

How so?

We’re laying the foundation for years down the road when everyone is using Google to find a doctor. Typically, health care trends a few years behind what’s happening in the marketplace. One tip I’ve always had is to look at what’s happening in other areas, spot those trends and see how I can apply it to what I’m doing. This is an exciting time. In health care, there’s something new every day and I’m glad to be in a position to help educate patients.

So where is this all going?

I see a social media network for health-care providers. You’re finding doctors on Facebook now, but it’s their personal pages. There is no killer site for health-care providers. I do think that in three to five years health-care professionals will adopt this en masse. I’m sure someone is working on it now, because it’s approaching a tipping point.

One of the things you’ll see in the future is less siloing of social media. You won’t see someone so focused on a blog, Facebook or Twitter. In general, this will all come together in one social media presence. The key is to get it on as many platforms as possible.

 

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Improving communication may influence outcomes, patient satisfaction

Improving communication may influence outcomes, patient satisfaction | Patient Centered Healthcare | Scoop.it

Patients recall only about 10% of the information imparted by physicians during an office visit, and about half of all patients don’t understand their treatment plan, according to Richard Nordstrom.

Furthermore, 90% of patients have difficulty following routine medical advice, said Mr. Nordstrom, chief executive officer for a health care communications consulting firm in Montclair, N.J.

The problem isn’t just one of low health care literacy. Patients who receive a significant, life-altering diagnosis often don’t hear much else after they hear words like, "you have rheumatoid arthritis," he said at Perspectives in Rheumatic Diseases 2013.

This is true regardless of a patient’s literacy level, and even those with high literacy may be too embarrassed to ask questions that they think might make them sound uninformed, he noted.

These factors lead to poor outcomes and less patient satisfaction. Improved communication can go a long way toward improving both, he said.

Physicians have so little time with patients; about half of those in a recent survey said that they see between 50 and 100 patients each week. The average time a health care professional spends educating a patient on conditions and treatments critical for the patient’s care is only 11 minutes, and during that time, patients ask an average of only two questions.

"Your moments with that patient are critical," Mr. Nordstrom said, stressing that for the patient, that time is the most valuable time they will spend "in their entire health care ecosystem."

Excellent communication in those brief moments will ensure that the most is made of that time, and that the patient experience is exceptional. Several steps can be taken to improve communication and to enhance the doctor-patient relationship – and to improve satisfaction and outcomes.

For one thing, talk more slowly, he said.

Eleven minutes is not a lot of time, and while slowing down may seem counterproductive, it will allow more information to sink in.

Also, use plain language. "NSAID" may seem like plain language to you, but for a patient, "anti-inflammatory" will likely make more sense. Remember that what may seem like plain language often is jargon.

"One report suggested that if you spend time on an educational intervention on something as simple as an NSAID, you’ll have a fourfold increase in efficacy in pain relief and reduction of inflammation," he said. "Assuming patients understand what they’re supposed to do is not enough."

Visual tools – pictures and "infographics" – are very helpful for improving communication and information retention among patients, as well.

Physicians often scribble information and drawings on the white examination table paper, then crumple that up and throw it away – and patients often fish that out of the trash can and take it home, he said, in explaining the value of visual learning.

"Infographics provide visual ways to communicate a lot of data," he said.

Technology, such as tablet computers, which are increasingly used in the office setting, can assist with this and can be an excellent communication tool rather than just a research tool and a tool for recording patient data.

Other tips for improving communication include using short- rather than long-form information and creating an empathic environment that makes patients feel comfortable asking questions.

Brief communications are important. Many patients get lost trying to navigate through long-form communications. It is important to filter it down to simple, small bits of information, Mr. Nordstrom said.

In addition to improving outcomes and patient satisfaction, improving communication is likely to reduce your risk of being sued for malpractice. One report suggests that at the core of 75% of malpractice cases are one or more of six factors: an inadequate explanation of the diagnosis, an inadequate explanation of the treatment, a feeling on the part of the patient of being ignored, a failure by the physician to understand the perspective of the patient or family/caregiver, a sense on the part of the patient that his or her views are devalued, and a sense by the patient that he or she was rushed.

Conversely, when communication is used to promote a more patient-centered relationship, which Mr. Nordstrom called an "exceptional patient experience," patients tend to come away feeling more engaged, activated, and empowered, he said.

 

 

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Two-minute health literacy test for patients might improve doctor communication

Two-minute health literacy test for patients might improve doctor communication | Patient Centered Healthcare | Scoop.it

Doctors often assume they're explaining things in a way patients understand. When patients are confused, doctors don't always realize it. A new study shows patients might benefit from having their "health literacy" tested.

Researchers at a large Arizona healthcare center looked at how a short health literacy test would affect the way patients felt about their treatment. They found it did no harm and may have helped to improve patient satisfaction.

"The main benefit of doing health literacy assessments is simply to make clinicians aware that there are patients with limited health literacy in their practice," said lead author Ian Komenaka at the Maricopa Medicine Center in Phoenix, Arizona.

"Most clinicians assume patients understand everything but this is frequently not the case. Patients may not realize they don't quite understand, or even when they know they don't understand, they are afraid or ashamed to tell the clinician," he told Reuters Health in an email.

Health literacy - the ability to understand and use health information - depends on individual skills and also on the complexity of the health information being presented.

People with lower health literacy, for example, might not know how to take their medications or why they have to follow specific doctor's instructions.

In 2003, a U.S. government study found that 89 million Americans had limited health literacy skills and they came from all segments of society.

"Patients with low or limited health literacy have poor outcomes from a number of disease processes which results in increased costs to society," Komenaka said.

But the tests have to be short and simple, so that patients don't feel badly about being tested or not performing well.

Health literacy tests aren't often done because most of the available ones take on average 8 to 22 minutes, Komenaka said. In addition, the tests can make patients feel ashamed when they don't know the answers.

When patients feel bad about these assessments, they might feel bad about the whole patient experience, or at least that's the concern of most clinics. Previous studies indicate patients will accept health literacy assessments, but those studies were all small and did not include minorities, Komenaka and his colleagues write in the journal Surgery.

The team wanted to know if shorter health literacy tests could be done in a busy clinic and how they would impact patient satisfaction. They used an assessment tool called the Newest Vital Signs (NVS), which only takes an average of two minutes.

For two years, all patients seen at a Phoenix breast surgery clinic were given the test during the course of their routine medical visits.

They were shown a nutrition label, just like the ones on most packaged foods. Then an interviewer asked them five questions about that label in either Spanish or English, depending on the patient's preference. One point was given for each correct answer. Total scores of 4 - 6 indicated adequate health literacy and scores below 4 meant possible limited health literacy.

A total of 2,025 women took part in the study and 391 participants had scores of 4 or higher. More than half - 1,229 women - scored between 0 and 1 and 405 women had a score of 2 or 3.

In separate surveys, patients were also asked to rate their overall satisfaction with their visits to the clinic on a scale of 1 to 5, both during the year before the NVS assessment was used and during the two-year study period. The average satisfaction rating the year before the study was 3.7. During the first year the assessments were used, the ranking rose slightly to 3.8, and went up to 4.1 the second year.

These results indicate the assessment procedure did not appear to have a negative impact on patient satisfaction, according to Komenaka's team.

The study did not determine why patient satisfaction actually rose, or whether clinicians changed their behavior with patients as a result of the testing.

But in 2011, the study's second year, the clinic made a formal effort to better communicate with patients with literacy scores between 0 and 2. These included using diagrams and informational videos, instead of text, to explain how treatments and procedures like biopsies would be done. Special efforts were also made to repeat key "take home" messages and information while talking with patients.

Because the study included only women, it's not clear if the results would be similar for men, Komenaka's team cautions.

According to Cindy Brach of the Agency for Healthcare Research and Quality, addressing health literacy can be valuable, but the tests shouldn't make doctors overconfident.

"We know that people with limited health literacy are less likely to use preventive services and manage their conditions and more likely to have unnecessary hospital admissions or visits to the emergency department," Brach told Reuters Health in an email.

"Everyone benefits from clear communication and we can't really tell - even with assessments - who is not understanding at any given time. My concern with assessment is that then health care providers think those who test as adequate health literacy are always understanding, when this is unlikely to be the case," Brach said

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Mobilium Smart Health app launched

Mobilium Smart Health app launched | Patient Centered Healthcare | Scoop.it

Samsung and Mobilium Global have joined forces to distribute the Mobilium Smart Health app - a "Made For Africa" mobile health and wellness, smart device application.

With the direct support and guidance of The Global Fund to Fight AIDS, TB and malaria, the app enables consumers to not only educate themselves around these diseases, but to identify symptoms, high risk areas as well as precautionary measures when travelling into those areas in Africa.

The app is focused on providing an accurate baseline information resource on HIV/AIDS, TB and malaria as well as invaluable knowledge on a number of ancillary topics such as injection safety.

The app is available as a free download to African mobile subscribers/consumers and is aimed at enhancing the health, health maintenance, health behaviours and ultimately the future health of individuals and their communities across the continent. It will also be factory embedded on all new Samsung smartphones and tablet devices distributed in Africa going forward.


Future releases

Future releases will include information on nutrition and Prenatal/Postnatal mother and new born care. The application also incorporates a mobile web based symptom checker - the Isabel Symptom Checker app, which is listed in the NHS Choices Health Apps Library of safe and trusted apps (reviewed by the NHS).

"Samsung has a distribution channel throughout Africa to carry a message and information and is the arsenal to combat these diseases," says George Ferreira, VP and COO of Samsung Electronics Africa. "We are committed to using our technology to impact the lives of our African consumers positively but we cannot do it alone - which is where our 'Count Me In' campaign comes in.


Count Me In campaign

"Information is digested in many ways by different people and we are calling on you to help us build a ground-breaking smart health solution with real impact," adds Ferreira. "Together with Mobilium we can provide the platform, but require input from those on the ground, those dealing with this everyday - to really create a solution with collaborative effect across the continent."

As such, Mobilium and Samsung Africa are calling on all doctors - in the field, dealing with these diseases on a daily basis to give them input on what information is going to help and what is going to change lives. They are also calling all the educators on the ground - when it comes to crippling diseases, what is missing from your curriculum and can Samsung fix this? For photographers to capture and share a story about the fight, the success, the pain and the victory. For filmmakers to build a library of education, to inform, to teach - because for most consumers in Africa, a change in habit could mean the difference between life and death. There is a need for animators to speak to our youngest generation because an early start is vital. A request for copywriters to speak to the people, to craft a message that will help them last a lifetime and a call for designers to craft campaigns, to build the message that Samsung can take out to our continent.


Feedback, suggestions

Through an in-app reply form added into the Smart Health application, interested parties across Africa can submit suggestions, observations, comments and feedback on how AIDS, tuberculosis and malaria are being fought in the areas and regions in which they live.

"We call on you to help us build a smart health solution, as this collaborative effort across the continent will help contribute to making a difference," adds Ferreira.

Global Fund ambassador, Charlize Theron recently summed it up: "This is the moment that we can maybe turn back and look at our children and say - there was a time...there was a moment that came along where we all got together as countries. We all got together as people from all different walks of life. And we joined together and we changed the course of history. That moment is not next week, or next year, or in five years. That moment is right now. "

"Let's be the generation that combats AIDS, TB and malaria in Africa, because we count and we are counting on you to help us make a difference," concludes Ferreira.

 

 

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Manage chronic diseases with smartphones and smart-tech inhalers

Manage chronic diseases with smartphones and smart-tech inhalers | Patient Centered Healthcare | Scoop.it

If people with chronic conditions only spend about an hour a year with their physician, how can they stay adherent with medication and their disease education for the 8,759 hours they’re outside the doctor’s office? The most promising answer is through mobile devices.

 

Health plan providers and plan sponsors can use mobile devices to monitor and engage participants with notifications, such as medication reminders, when it is most convenient for them. Backsliders know where they are failing through self-monitoring in real time and coaches monitoring their results can intervene when necessary.

 

“People need to be thinking about lifestyle choices when they're living life. People don't live their life at a desk," says David Bjork, president of Telcare, Inc. He adds that lifestyle changes occur in the "between" moments, such as before and after work, during lunch or at home. Disease management programs and outreach need to encourage healthy behavior at all times.

 

Bjork insists that the current disease management strategy and methodology need to evolve; most of today’s programs identify people who are most expensive in claims data last year and manages them in order to save money for the future. However, he says, employers need to look at diseases from the wide mouth of the funnel and help people earlier before they escalate into high-risk categories and become high health plan utilizers.

 

Mobile technology is no different, says Bjork. Mobile outreach is deployed to focus on the most expensive, high-risk patients in a population. New solutions have emerged that collect data from more patients and track a wide range of peoples’ activity, biometric data or clinical metrics. And he believes more will come.

 

“The problem is that disease management as we know it has failed,” said Jonathan C. Javitt, MD, CEO and chief medical officer at Telcare, Inc. during a presentation at the Care Continuum Alliance Forum in Scottsdale, Ariz. These antiquated outreach programs too often identify the high-cost individuals from last year without taking into account who will be high cost this year or the year after that. He believes mobile solves this problem by engaging everyone in a population and can monitor and intervene with people in real-time before they become high risk.

 

Bjork agrees that tier-models focusing on certain diagnosis groups with high levels of utilization are missing an opportunity because certain disease states or condition states are left completely unguarded. For instance, disease management programs that focus on diabetes should also target obesity since that often leads to diabetes.

 

Mobile solutions for diabetes allow individuals to manage their blood sugar levels by sharing blood glucose levels through the cloud to the care management coach or vendor can monitor their levels behind the scenes. Mobile outreach can help manage pre-diabetes and weight as well by tracking a participant’s activity.

 

Carolina Advanced Health uses an online database to collect participant metrics and monitor them in a team-based approach with nutrition experts, care managers and pharmacists through disease registries. Participants self-collect their glucose levels through a mobile platform, which sends the data to health professionals. If the care team notices a blip in blood glucose levels after lunchtime, a nutritionist can call the patient immediately and ask them about their activity and meals that day to determine what caused the increase. The system educates the patient while monitoring their health metrics in real-time.

 

Self-management can get good results, explained Thomas Warcup, medical director at Carolina Advanced Health, but “when you add a team you get greater results because you’re watching the data on a real-time basis.”

 

Bjork believes mobile outreach like this is just the beginning. He predicts the mobile outreach for diabetes will fan out to managing other diseases. For example, blood pressure levels, asthma, and weight will all be observed in a more mobile way.

 

"We will start having methodologies for monitoring people in their own settings to manage behavior and intervene early on and not wait for the first episode to occur," he says.

 

One smart-tech inhaler gathers data whenever a patient uses it, helping understand what triggers an asthma attack and how to avoid one. Propeller Health’s inhaler shows when and where the patient uses it and combines this data with weather information (such as wind and UV index) as well as traffic information. With this data, they can map a city for an asthmatic patient so they can avoid bad air locations and prevent potential asthma attacks.

 

And the best way to make these programs visible and popular is by including everyone. Bjork advocates opt-out programs so that a wider number of people participate and more likely to change their behavior and develop better habits and a healthier lifestyle.

 

 

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A Program that simulates what it's like to have diabetes

A Program that simulates what it's like to have diabetes | Patient Centered Healthcare | Scoop.it

Olmsted Medical Center got such a good employee response to its first diabetes simulation that it has expanded the program and opened it to friends, co-workers and loved ones of area diabetics.

The simulation helps people without diabetes get a sense of what managing the disease is really like.

Participants must record how many carbohydrates they eat -- every time they eat -- for a week. They also note exercise, check blood sugar by pricking a finger four times a day and give themselves injections of fake insulin.

"I just really can feel for the people who have diabetes," said Judy Devorak, a nurse practitioner at OMC. Many of her patients have Type 1 diabetes, the kind typically diagnosed during childhood, or Type 2 diabetes, the type most get as adults.
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People with diabetes must keep track of so many tasks, log so much information and pamper so many health-related issues that it can be tough to extricate diabetes from the act of living.

"One of the things that really hit home was how it just doesn't go away," Devorak said. "It's there all the time."

OMC employees who volunteer for the simulation, and now members of the general community, are secure in the knowledge that after a week they can go back to their normal lives.

But people with diabetes can never stop paying attention to a multitude of diabetes-related expectations, Devorak said.

"If you're really diabetic, this is something that's there, day-in and day-out, for the rest of your life," she said.

Endocrinologist Dr. Kalpana Muthusamy said it can be difficult for health providers and loved ones alike to understand why diabetes is difficult to keep under control.

Muthusamy began the OMC course because she took one during her educational experience at Mayo Clinic.

"I totally saw a different perspective of things. ... I think it just opens up a whole new aspect of understanding your diabetic patients," she said.

OMC now plans to offer the weeklong experience to members of the community every three months.

 

 

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Getting Patients Engaged Is the Key to Strong Health Care | MHADegree.org

Getting Patients Engaged Is the Key to Strong Health Care | MHADegree.org | Patient Centered Healthcare | Scoop.it

For all professionals who work in health care, proper engagement of patients in their health care is very important. Having patients with a stake in the quality of their health care is the key to getting better outcomes, fewer visits to the ER and fewer trips to the hospital.

 

It is very easy to see who an engaged patient is. He or she does what the health care provider says, and does what their health care team says they should do for the best health outcome.

But isn’t it true that being engaged in your health care really depends upon what your perspective is?

 

You see, everyone defines what health is based upon what is happening in our own lives, and in our own particular way. All people have different levels of satisfaction with their health care, and what they consider to be good health.

 

There are certain patterns of health care that we can use to better segment various health care  populations. One such pattern is to put a top priority on having a very high level of good personal health. Another is to be proactive as far as maintaining that good health, and another issue is when people do not trust their medical professional.

 

It is not a surprise that people who have such a pattern of thinking about health care will usually go to doctors’ offices less often, as well as the hospital and ER. This will drive lower health costs. These people are also the most healthy when they are compared to other patterns of thinking about health. Because these patients have trust issues with their doctor, they tend to be mavericks and like to do their own thing to stay healthy. So, they are not the most compliant patient and will tend to be more unengaged from their health care professional.

 

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IMS Health Identifies Opportunities for Mobile Healthcare Apps to Drive Patient Engagement, Enhance Delivery of Care

IMS Health Identifies Opportunities for Mobile Healthcare Apps to Drive Patient Engagement, Enhance Delivery of Care | Patient Centered Healthcare | Scoop.it

Despite growing interest in the use of mobile applications by patients and healthcare professionals as part of wellness, prevention and treatment regimens, the vast majority of available apps has limited functionality or evidence of value in advancing healthcare provision and outcomes, according to a new report released today by the IMS Institute for Healthcare Informatics. Most efforts in app development have been focused on overall wellness, especially diet and exercise apps, and do not address the greatest areas of need in healthcare – patients who are facing multiple chronic diseases and are typically over the age of 65. The study, Patient Apps for Improved Healthcare: From Novelty to Mainstream, is the first of its kind to examine the current state of consumer-focused mobile apps in the health system.

 

More than 43,000 health-related apps are currently available for download from the Apple iTunes app store. Of those, the IMS Institute found that only 16,275 apps are directly related to patient health and treatment.

 

The report's key findings include the following:

- Despite the large number of healthcare apps developed, most have only limited functionality.
- The downloading and use of healthcare apps is limited.
- Few apps are designed to address areas of greatest need.
- Most physicians remain wary of formally recommending healthcare apps.
- In order for apps to move from novelty to mainstream, four areas need to be addressed.

 

The full report, including a detailed description of the methodology, is available at www.theimsinstitute.org

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Startup unveils a wearable device it says can count calories -- but it doesn't actually exist yet - MedCity News

Startup unveils a wearable device it says can count calories -- but it doesn't actually exist yet - MedCity News | Patient Centered Healthcare | Scoop.it
Startup AIRO made mobile health news this week for claiming to have figured out how to automatically track calories using spectrometry in a wearable device.
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Betting on Google Glass for surgeons pays off big time for Austin startup - MedCity News

Betting on Google Glass for surgeons pays off big time for Austin startup - MedCity News | Patient Centered Healthcare | Scoop.it
The team at Pristine.io has had a great year: raising money, testing its Google Glass software for surgeons at a major hospital and winning a DEMO God award.
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BCS urges patient role for NHS information sharing

BCS urges patient role for NHS information sharing | Patient Centered Healthcare | Scoop.it

 

BCS, The Chartered Institute for IT has called for a greater role for patients in information governance.

While welcoming the recommendations made in the recent Caldicott 2 Review report, BCS Health says several issues need to be addressed.

In its response to the review, BCS is calling for a greater role for patients in information governance, and a move to the widespread use of "privacy enhancing technologies" to avoid the need for duplicating identifiable data outside the care providers that create it.

 

Also, where such data is stored centrally, the BCS wants tighter governance and more transparency from the "safe havens" holding it.

Dame Fiona Caldicott led an independent panel of experts reviewing patient information governance practice in the NHS, and the final report, referred to as Caldicott 2, was published at the end of April 2013.

The panel’s “overarching aim has been to ensure that there is an appropriate balance between the protection of the patient or user’s information, and the use and sharing of such information to improve care", said Caldicott.

Dr Justin Whatling, chair of BCS Health, said: "Patient information governance is an increasingly important topic because of the urgent need to share and integrate patient data to improve care and care commissioning, power research and to empower individual patients.

 

"However, we believe there is still more that could be done in ensuring that patients play a role in the governance of their information, and to this end we have made our own recommendations to supplement those in the report.”

Ian Herbert, vice chair of BCS Health, said: "De-identifying data before it leaves its origin will greatly reduce patient concerns about unconsented secondary uses of their data, and have an insignificant impact on the ability to link data from different sources and its utility for secondary uses."

For the "relatively small number of patients who are still concerned", he said, allowing patients to opt out of their data being used for secondary purposes was appropriate. "However given the importance of patient data in care and research, we should aspire to provide more granular opt outs," said Herbert.

Patients should be able to opt out of use for research, risk stratification or service audits, rather than out of all data sharing, Herbert said.

 

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