The Empowered Patient® Decision Support web app is a series of ten questions that help identify areas in which patients may need help and support when making health care decisions. The app produces a streamlined pdf report of areas where the patient feels confident and decisive – and areas in which the patient may need information and guidance.
The Centre for Patient Leadership (CPL) provides learning and support for a new generation of healthcare leaders – Patient Leaders.
Now more than ever, the NHS needs new leaders and innovative solutions. But patients, service users and carers are seen as part of the problem and remain a huge untapped asset. It’s time to shift our thinking.
When patients lead and manage their own health and well-being and when they develop the confidence and skills to lead and influence others, something special takes place! Positive change happens, new solutions arrive and collaborative systems of healthcare emerge.
The “digital exhaust” from your mobile phones and other devices could give doctors a valuable window into your wellbeing.
Big data may be a rising star in health care but small data can play a powerful role, too. At the TEDMED conference on Wednesday, Deborah Estrin, a computer science professor at New York City’s Cornell Tech, gave a compelling case for how your “digital exhaust,” including location data, searches and social media posts, could provide a valuable window into your wellbeing.
“We’re continuously generating digital breadcrumbs from the services we interact with,” she said. But “there are no existing vehicles that package that data about me in a format that’s useful for me and that make it accessible to me. [And] there should be because there’s a lot that I can learn about my personal health from my digital behavior.”...
But Estrin wants to encourage an entire ecosystem of apps. And, along with colleagues at the mobile health non-profit OpenM Health and Cornell Tech, she’s beginning to build prototypes that demonstrate the benefits of using small data for personal health, as well as create the architecture for service providers, app developers and others to create additional small data health apps and algorithms. (You can learn more about Cornell’s small data initiative here.)
“We need an open architecture, so that a rich market of apps and services can grow up around that data just like http created the World Wide Web and led to the rich array of internet services,” she said.
rob halkes's insight:
INdeed the roadmap to an ecosystem is ahead of us..
Obtaining and documenting informed patient consent prior to surgery is of vital importance, but both the process and documentation of consent can be inadequate.
Today at the annual meeting of the American Association of Neurological Surgeons in San Francisco, physicians from the University of Pittsburgh Medical Center reported on a study of a procedure-based consent form they have developed to enhance and improve this process.
“Appropriate physician conduct in medical/legal matters begins with the informed consent process. This leads to an understanding of the patient’s diagnosis, the planned procedure, the therapeutic alternatives – both medical and surgical, and the inherent procedural risks,” reported Douglas Kondziolka, M.D., Peter J. Jannetta Professor and vice-chairman of neurological surgery, and professor of radiation oncology at the University of Pittsburgh School of Medicine. “It has been argued that most surgeons do not devote appropriate importance to informed consent in their daily duties. The patient consent procedure we developed facilitates patient discussion and we validated this process by surveying our patients on various elements of the consent process.”
In the study, 120 consecutive patients were evaluated....
“The practice-specific consent form we developed is modular and simple to use. Because it is written as a check list, it aids the surgeon in discussing each issue with the patient so that all of the important topics are covered,” Dr. Kondziolka said. “Our study involved questions asked in an open-ended format, but the patients had a finite list of items to recall. A secretary, with no medical background or pretenses, administered the questionnaire. In this way, we avoided the potential pitfall of having a physician misrepresent any portion of the informed consent process. We believe this method to obtain and document informed consent should be considered for use by physicians.”
rob halkes's insight:
Great research to see how consent forms impacts the retention of patients. Simply and effectively..
12 Ways to Improve the Healthcare User Experience ( Industry Verticals ) Technology is a great way to engage patients in managing their health, but poor design--whether it's a bad interface or an app that doesn't meet patients' needs--often stands in the way. These 12 tips will help designers and developers improve the user experience for patients who want to improve their health.
At the recent Healthcare Experience Designconference, of which Cueva is the chairwoman, attendees learned 12 strategies for improving the healthcare user experience.
- Understand the Problem You're Trying to Solve
- Participatory Design: It's All About Empathy
- Focus on the Underserved
- Eliminate the Source of the Problem
- Focus on What Users Need, Not What They Want
- Remember That Millennials Are Brats
- Don't Confuse Web Literacy and Health Literacy
- Don't Forget That Typography Matters
- Target the Ready and the Willing
- Learn From Video Games
- Support Measurement-Based Medicine
- Bring a Sword
rob halkes's insight:
Great blog by Brian Eastwood, insightful and must read!
Patients in context: Recognizing the companion as part of a patient- centered team Marla L. Clayman, Megan A. Morris
Physician–patient–companion communication and decision-making: A systematic review of triadic medical consultations R.C. Laidsaar-Powell, P.N. Butow, S. Bu, C. Charles, A. Gafni, W.W.T. Lam, J. Jansen, K.J. McCaffery, H.L. Shepherd, M.H.N. Tattersall, I. Juraskova
Effects of remote feedback in home-based physical activity interventions for older adults: A systematic review Hilde Geraedts, Agnes Zijlstra, Sjoerd K. Bulstra, Martin Stevens, Wiebren Zijlstra
Validation of the English version of the Trust in Oncologist Scale (TiOS)
Marij A. Hillen, Phyllis N. Butow, Martin H.N. Tattersall, George Hruby, Frances M. Boyle, Janette Vardy, Bellinda L. Kallimanis-King, Hanneke C.J.M. de Haes, Ellen M.A. Smets
How to ask: Older adults’ preferred tools in health outcome prioritization
Siobhan M. Case, Terri R. Fried, John O’Leary
Cross-cultural validation of the Patient–Practitioner Orientation Scale (PPOS) Cláudia M.A.S. Pereira, Carlos F.S. Amaral, Maria M.F. Ribeiro, Helena B.M.S. Paro, Rogério M.C. Pinto, Lara E.T. Reis, Carlos H.M. Silva, Edward Krupat
Stimulating client involvement and client–provider dialog through participatory video: Deliberations on long-term care in a psychiatric
The perception of shared medical decision making of expert and lay people: Effects of observing a movie clip depicting a medical consultation
rob halkes's insight:
Good to see these research outcomes ! They will undoubtedly learn us more about the Caring relationship between professionals and patients. I do like the review of the triadic medical consultation, as well as the perception study of shared medical decision making!
It is interesting to note that all discussions about patient empowerment, social media, engagement, social health and ehealth are now slowly, but as it seems to me, definitely moving into recognizing the most fundamental notion of change in health care: the notion that it is indeed the patient's understanding, reflection, attitude and subsequent behaviour that matters in care for health. And, that hence the caregiver's most important role beyond his possible physical intervention, is the guidance and coaching of the patient's very behaviour.
So we are going to see more discussions of how to guide effectively, instruct, teach, reflect, co-learn etc etc.. between physicians and patients.
We are back at school. And upon the dawning of this very notion, it so seems that all protagonists of the system of caring for heath are with us too...
Introduction The iWatch will fill a gaping hole in the Apple ecosystem. It will facilitate and coordinate not only the activities of all the other computers and devices we use, but a wide array of ...
Sensors enable the watch to monitor you in sickness and in health, tracking calories burned, miles walked, steps climbed, restlessness of sleep, even advent of tremor and other early warnings of serious health conditions..."
rob halkes's insight:
Looks like a serious device may be found to function as an integrated sensor..
According to a study recently published in Medical Decision Making, physicians who used computerized clinical decision support (CDS) to confirm a diagnosis or treatment plan were viewed as incompetent or less capable by patients.
...the University of Missouri study asserts that patients are mistrustful of the technology, perceiving physicians as “less professional, less thorough, and having less diagnostic ability.” ...
rob halkes's insight:
Again, this is insightful knowledge to know patients better.
Obviously, we are confronted here with "concepts" held by patients about what is perceived as "good care" or "good doctors", etc. If we get to know more of these, we'll be able to reassure patients about what to expect and what to look at when to evaluate the care they receive... They too will may and will want to learn. As, in care, this is beginning to be the intention of caregivers (not to insult anyone though), we are still at starting points about this. That makes it the more interesting and hopefull regarding what to find, and how to innovate patient - caregivers interaction, because of that, better!
Today, a deep sigh at your smartphone could reveal a well-developed emotional connection with your gadget. But one day those sighs could tip off your doctor to a latent or worsening lung condition.
A group at the University of Washington, in collaboration with Seattle Children’s Hospital, is developing a way to check how healthy your lungs are when you breathe out at your smartphone.
For patients with conditions like asthma, chronic bronchitis, or cystic fibrosis doctors sound out their pipes using a spirometer, a device that measures volumes of air breathed in and out. The exhaled volume indicates if the patient’s air passages are clogged and leading to difficulty breathing. ..
rob halkes's insight:
We are in the early phase of detecting the possibilities and opportunites that consumer handheld devices may bring to learn about our proper conditions.
Thats's great: but what does it mean to consumers recognising themselves as patients, how do they handle that.. And, the same goes to their caregivers/patients? Study and research for this meaning is a key issue to the medical research community.. How doe they take this up?
And how is it implemented to current care systems...
Thrilling, inspiring, but needing a lot of attention and focus..
The growth of the Internet and the rise of social networks have changed the way we communicate, interact, find information, shop, learn, and more, including the way we learn about healthcare pharmaceuticals and medical devices
The number of groups that have grown around specific issues in healthcare is astounding. To get an idea of just how many online communities there are for different diseases and conditions, just take a look at this list, which aggregates the wide variety and large number of pharma and healthcare communities online.
Hashtags help categorize conversations within social media, marking them by keywords or acronyms specific to a certain topic. This makes it easier to create and find specific communities, whether it’s #HCSM (healthcare social media), #Diabetes, or #BreastCancer. Twitter chats are ways for people around the globe to come together to discuss specific topics. Symplur is doing a great job of compiling all of the healthcare hashtags and categorizing them.
rob halkes's insight:
Indeed, ways to empower patients. However the cre to good care is optimal interaction between patient and caregivers. A lot about this interaction, its mutual trust, the compassion which is needed from the caregiver, coordiantiona and structure of the process of care etc. etc. moght be the extra challenge to empowerment. A patient anxious about what it is that (s)he is suffering from, and whether if at all this is curable, must sometimes be very empowered, sya determined to overcome the burdens to optimal care.
Anyway, it still is as yet the most important factor that will drive innovation in care systems, to enable optimal results from empowered patients..;-)
Sitting in a physician’s office wearing nothing but a paper thin gown can be daunting in and of itself. Now imagine, your white coat syndrome worsens as your doctor throws out unfamiliar vocabulary, as your mind draws a blank. If this sounds familiar, you’re not alone, according to Archives of Internal Medicine most patients only understand and retain about half of what a provider tells them, and do not feel comfortable asking providers to clarify. Approximately 90 million people in the United States lack the basic skills or proficiency necessary to understand and use health information as reported by The Institute of Medicine. National data from the Center for Education Statistics suggests that only 12 percent of American adults have proficient health literacy skills – reading, writing, understanding, computing, communication and using health information. The growing disparity in health literacy is directly impacting patient health. Low health literacy has been estimated to cost the U.S. economy between $106 billion and $236 billion annually reported by the Center for Health Policy Research.
As defined in Health People 2010, Health literacy is: “The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.”
The problem affects patients of all demographics. People of all ages, race, income and education levels have a difficult time communicating with healthcare providers, and health literacy can also be influenced by culture, language, religion and belief systems.
Most patients are interrupted by their physicians after 18 seconds… yes 18 seconds.
Well, that isn’t going to cut it anymore.
Patients are individuals. They have differing ideologies, values, goals, pain thresholds, lifestyles, and few patients react the same way to the same disease process.
Enter the days of Informed Decision Making …
Poor communication and poor listening skills are likely at the heart of this emerging high tech-low touch method of treating patients these days. In these days of medical data overload, it is becoming far too easy to order and treat a lab test or MRI, as opposed to treating a patient as a person.
Each injury has its own “personality”. That means that an ACL tear in a couch potato who slipped picking up their newspaper probably needs to be treated differently than a patient of the same age who exercises twice a day and plays every sports under the sun. Yet, of all the second opinions I am seeing that doesn’t seem to be the case. In most cases patients are being told – “your MRI showed this and you need that”…
Incorporating the art of informed decision making into your daily workflow means you need to listen to your patient. You need to dive deep into their own ideologies, values and goals that will shape their decision when presented with the alternatives available. Your are a coach, you are part of a team that will arrive at the right choice for that patient at this particular time. You will need to listen for more than 18 seconds … and you will need to learn to treat patients as people and not as a disease state or an MRI finding.
Physicians feel rushed because they’re trying to maintain their income as their reimbursements decline and they need to spend more time filling out reams of paperwork to justify many of their requests or actions. We need to adjust to this new reality without putting our patients health at risk… or without recommending a procedure that someone clearly doesn’t need.
In a recent NY Times piece.. The author, Seth Horowitz points out ..
Listening is a skill that we’re in danger of losing in a world of digital distraction and information overload.
“You never listen” is not just the complaint of a problematic relationship, it has also become an epidemic in a world that is exchanging convenience for content, speed for meaning. The richness of life doesn’t lie in the loudness and the beat, but in the timbres and the variations that you can discern if you simply pay attention.
Embracing the art of listening will lead to better treatment decisions, better resource utilization, fewer medical errors, a happier more engaged patient base and hopefully a physician who once again can enjoy the non-monetary rewards of a career in medicine.
I can only repeat that: "You never listen” is not just the complaint of a problematic relationship, it has also become an epidemic in a world that is exchanging convenience for content, speed for meaning. The richness of life doesn’t lie in the loudness and the beat, but in the timbres and the variations that you can discern if you simply pay attention.
Our "fast" culture also influences our health - and so too: the process of healing!
The boundaries between the physician – patient relationship have always been difficult as the relationship is based on trust, intimacy and the ability to share information from both sides of the desk. This relationship has grown more complex due to the rise of social media engagement. Physicians are being friend-ed, followed and reviewed across the digital channel like crazy, placing the doctors that care for them in difficult positions regarding the confidentiality of their patients who often don’t think about the impact of their digital-buddy request.
Similarly, due to the ease of digital communications, the commonly time-stretched doctor also faces temptation to use quick communication methods to reach their audience, in lieu of a more professional path. No-one really wants their test results Tweeted to them! These examples of digital doctoring to be avoided are covered in the guidance. Protecting patient privacy and confidentiality is stressed as the main area for focus when using social media.
In order to help doctors better understand digital communication best practices and to fill a gap than many medical practice management efforts have neglected, about a week ago, the American College of Physicians (ACP) and Federation of State Medical Boards (FSMB) published a policy paper entitled“Online Medical Professionalism: Patient and Public Relationships.” Some of the highlights from this publication can be found in this helpful table
Prior to a discussion about the use of social media by nurses and midwives, thoughts on where the lines should be drawn.
Maintaining clear and appropriate boundaries in the world of social media can be a real challenge for patients and the health professionals who care for them.
Advice from the Nursing and Midwifery Council issued last year warned that nurses and midwives must not overstep those boundaries by sharing confidential information, distributing images taken in clinical environments or pursuing personal relationships with patients online.
Similar advice for doctors followed, and other regulators are taking action on a subject that concerns patients, health professionals and their employers. But while this advice has been helpful in clarifying expectations of appropriate behaviour, and allowing regulators to take action when boundaries are breached, it may have left health professionals with the impression that any online engagement with their patients is simply wrong.
An event run by the NMC as part of this year's social media week brings together bloggers, tweeters and digital enthusiasts from both sides of the patient-professional divide, to see where the boundaries should be drawn
rob halkes's insight:
One of the relevant concerns are to me the question is the channel on line private, or not. Then things get more clear as to what or where the line lies, could be.
The key to health information security is in data security, and not necessarily the devices in which data is stored, according to Barbara Bartley, executive director of IT operations and information security officer at Montgomery, Ala.-based Baptist Health. Bartley, in a recent interview with Health IT Security, says that too often, people get "lost" in trying to protect data by focusing on devices.
Bartley thinks that her approach can help CIOs and CISOs focus on the "most important part" of managing a large healthcare system's security framework.
In describing Baptist Health's technical safeguards, Bartley says, "The biggest security impact, in my mind as a security officer, is our end users having knowledge of the privacy and security expectations and how breaches happen. Education, monitoring and auditing are our life from a security standpoint."
All mobile devices issued to end users--such as iPads, iPhones and Androids--are physically encrypted with multi-factor authentication to reduce access to protected health information, according to Bartley. When it comes to BYOD, she says, employees must follow ground rules, which means having a remote wipe enabled.
As FierceMobileHealthcare recently reported, nearly 89 percent of U.S. healthcare workers use their personal smartphones for work purposes, according to a Cisco partner network study. When it comes to security, the study found that 41 percent of healthcare employees' personal devices are not password protected.
rob halkes's insight:
The most important issue in safeguarding medical data is the security of and from the end user: the patient. As long as there is no use of a professional - patient platform integrating both patient personal and professional data, there is no reliablity whatsoever in determining what the actual data of the health condition of the patient are. Here's where ehealth provisions need to come in. E.g. what use does a pharmacists database have, if the patients collects his drugs, but doesn't use them...
Many articles have been written about what in recent times has come to be known as 'content strategy' -- the reassuring, if not always entirely accurate, notion that we are in control of all the resources available to us, can marshal them with precision, and present them optimally.
Rather less has been said about the manner in which we present these materials, presumably because it is a given that by default we will do so in the most sympathetic and productive manner possible.
However, the critical eye does not have to wander too far across the topographies of social environments to appreciate that this is frequently not the case.
rob halkes's insight:
Indeed "trust" goes first, comprehending the information right after that.
I guess trust is more studied than apprehension, meaning to patients?
Mobile and digital health’s potential to help bring about healthy behavior changes has led a number of companies to target the problem with new connected devices, applications, and services. Some of these have claimed to be highly effective: MediSafe recently stated that their app raised users’ adherence rate to 81 percent over the course of its first eight weeks that it was made available, and Vitality GlowCaps once reported pushing adherence rates to as high as 98 percent, both well above the World Health Organization average of 50 percent. NEHI has stated that digital health offerings similar to these have considerably improved adherence, but the market penetration for these tools is still low.
The challenge for these companies is not just to develop an effective product, but also to figure out who will pay for it. That means addressing the sticky question of whose problem med adherence really is.
Patients don’t take their medication for a number of reasons. Forgetfulness is one, particularly in chronic disease patients who have a large regimen of pills to keep track of and in elderly patients who may have poor memories or become confused easily. But other patients don’t take their meds for psychological reasons: some patients “feel fine” and skip a drug, some are concerned about real side effects. Some, according to NEHI Senior Health Policy Associate Nick McNeill, are concerned about imagined side effects. Finally, many patients stop taking medications because they simply can’t afford the co-pay. This, of course, is not a complete list but it does include some of the more commonly referenced reasons. Digital health could play a role in resolving some of them.
Even in an age of hype, calling something “the blockbuster drug of the century” grabs our attention. In this case, the “drug” is actually a concept—patient activation and engagement—that should have formed the heart of health care all along.
The topic of this thematic issue of Health Affairs, patient engagement is variously defined; the Institute for Healthcare Improvement describes it as “actions that people take for their health and to benefit from care.” Engagement’s close cousin is patient activation—“understanding one’s own role in the care process and having the knowledge, skills, and confidence to take on that role,” as Judith Hibbard and coauthors explain.
More holistic definitions broaden these concepts further, describing patients and families working with providers all across health care, in such areas as patient-centered outcomes research. Two articles in this issue, including Entry Point, examine engagement in the “ultimate conversation” about the end of life.
People die prematurely and suffer from poor health simply because they don’t have the knowledge, skills and confidence to self-manage their health effectively.
But whether they recognise it or not, patients and their carers are already self-managing during the many thousands of hours they spend at home caring for themselves each year.
Better patient self-management leads to healthier patients, more appropriate health service usage, and fewer unplanned hospital admissions.
rob halkes's insight:
KYOH - Know Your Own Health is a far reaching consequence of putting the patient first: the new site looks very insgihtful as to what the patient would need and what (s)he might want: presenting an eco system to create the proper journey to cope with one's health condition. Avisable, usable and researchable.