Patient perspectives come from the front line of personal diagnosis.' Those who are ill, are in recovery, or who cope with chronic conditions have special insight about health care experiences and managing their care.
On Calling the Shots, Beth Gainer takes issue with using terms such as "sexy" and "sassy" to describe the experience of having breast cancer.' As a breast cancer survivor, Beth understands the reality of the diagnosis, treatment and aftermath that left her feeling anything but sexy or sassy. In The Treatment of a Lifetime of Pain, Cynthia Lott Vogel tries "to give you an idea of some of what a chronic pain patient may go through."' She explores the numerous difficulties someone bearing the diagnosis of chronic pain faces in their search for help.' Marc Stecker, aka Wheelchair Kamikaze, is no stranger to the difficulties of living in a world designed by and for able-bodied people.' For the disabled, the world can seem foreign and unintuitive.' The Accidental Alien takes a unique approach to this situation by creating a world constructed solely for the disabled.' If you ask Jennifer Jaff, she'll tell you that it's possible to make those who are ill feel a little less alien in this world.' How?' By making the invisible visible.' She advises that simple acts can change the world of the chronically ill.
To make sure she could take her medications as directed, Warm Socks has tried numerous systems: the cross-your-fingers-and-hope-for-the-best system, the dancing-bottles system, the list/highlighter system and ' finally ' the pill-organizer.' Her piece explores just one part of living with a chronic condition: managing multiple medications.' How well prepared is the health care community to seek out these stories and use them to design care that's better, safer, more efficient and more responsive to patients' needs? Telling the Patient's Story, by Anne Polta, reflects on' why it's important to allow patient stories to be part of this process.
Another responsibility that falls on patients is the need to be informed about their condition and the research relating to it.' This aspect of patienthood can be burdensome for those who are ill.
Many patients rely on clinical trials to produce treatments that will help them.' RA Warrior Kelly Young wonders if and why some rheumatoid arthritis trials seem to target a specific group of patients who respond better to treatment than average patients do.' When it comes to personal research, About.com's Trisha Torrey has a word to the wise, suggesting that patients explore why their doctors seem resistant to discussing information that patients find online.'
Once you've recovered from a serious illness or are terminally ill'there are still more decisions to be made.
Should survivors of illness and those who are terminally ill make a bucket list?' Carolyn Thomas' post humorously addresses the existential question: "When you've somehow survived what many do not, should you now' create a list of exciting life-affirming adventures to complete before you head off to that great Coronary Care Unit in the sky?"' And finally, Allison Blass, in a letter to her first diabetes doctor, notes all that has changed in the diabetes world and how much she appreciated his care.' We can all aspire to have this kind of relationship with our health care providers.
From the Sidelines'
Patient advocates, policy wonks and watchdogs sound off with close-up perspectives ranging from rating patient experiences to evaluating the latest news stories and health information technology (HIT) innovations.
In what seems like a rare event these days, Steven Wilkins gives a firsthand account about how a meeting with a new physician turned into a wonderful patient experience.' Stories of personal interactions are the foundation for the evaluation tools that Julie Rosen supports in her blog.' She writes about her support for evaluating patient satisfaction and providing hospital bonuses based on favorable patient satisfaction outcomes. Marya Zilberberg provides us with a reminder to look carefully at the evaluation tools used to promote new technologies and always look at the denominator.
Gary Schwitzer's HealthNewsReview Blog, warns patients with three examples (in one week) of PR companies using objectionable techniques to promote pharmaceutical products to journalists.
HIT continues to evolve and change the way that patients and doctors interact and communicate.' Lindsey Hoggle from Informatics for Consumer Health suggests a third player, the government, to participate through technological advances and is encouraged by the Draft Federal Health IT Strategic Plan (2011-2015) in her post In Concert. ' Mary Pat Whaley sends out a call to medical professionals to utilize technology as a way to be transparent about medical costs, so that patients can make informed decisions and communicate more effectively with their providers.' Susannah Fox, of the Pew Internet & American Life Project, gives us data, data and more data about how Americans are gathering, sharing and creating health information in her speech at the Mobile Health conference at Stanford University.' '
Inside Health Care
Physicians, medical students, nurses, and other health care professionals shared posts covering a wide range of topics.
It begins in medical school'
Fourth-year medical student Christopher Bayne tells us how we can improve medical education.' His ultimate hope is that 'Technology will free overhead and liberate human energy.'' On OB Cookie, resident in training Elizabeth Breuer, offers advice to new interns. ' Her final tip?' "Work hard, keep your head down, take care of your patients and take responsibility for your actions."' In Short White Coat, fifth-year medical student Ishani Ganguli reflects on a New York Times piece on hospital bullying. She recommends training in communication and team building between medical students similar to what is needed for good doctor-patient skills.
Social Media is more than a buzzword in the health care world.' Here, physicians talk about what it means to them.
Dr. Glenn Laffel says "the genie is out of the bottle.'' He believes that all professionals should aggressively adopt social media.' However, he also notes that it can blur professional and personal boundaries, risk patient confidentiality and threaten the careers of those who misuse it.' For doctors who are just starting to use social media, Dr. Ves Dimov provides advice and a list of the top Twitter doctors by specialty.' And with so many patients and doctors going online, Dr. Irwin Lim wonders if patients get better information online than from their doctor.' After he started blogging, he discovered that patient blogs have much to offer both doctors and patients by demystifying conditions.
Blogging also provides clinicians with a venue to discuss the latest research/practice.
Dr. Ed Pullen takes a skeptical look at why labor and delivery units are adopting the use of nitrous oxide for labor pain relief considering that its effects on the fetus have not been studied. In a similar vein, Peggy Polaneczky critiques a Wall Street Journal article, saying it is filled with speculation, misinformation and generalizations about birth control and sexual attraction in humans'because the study was conducted on lemurs!' For more reputable information, president and CEO of Better Health, Dr. Val Jones offers evidence-based weight loss and fitness tips to ABC News.' And for allergy sufferers, Dr. Ves Dimov offers findings from a small, randomized controlled pilot study (results should be considered preliminary) on birch pollen-rich honey allergies.' And Inside Surgery provides the American Association for the Study of Trauma classifications of pancreatic injuries on its blog.
Providing care is a doctor's job, but so much affects how that care is administered.
Dr. Michael Kirsch discusses the 'under-the-radar' factors that affect patient referrals.' He says, 'In my experience, availability trumps clinical acumen for many referring physicians who want their patients seen expeditiously.'' Second, manners and personality can affect the quality of care a patient receives, says Elaine Schattner.' She reflects on a recent post by Dr. Wes and says, 'It's the professional's job to see beyond the smile or anger' of the patient in order to provide good care.' The Happy Hospitalist couldn't agree more.' He says it's the physician's responsibility to provide quality care at an affordable price.' To back this up, ACPHospitalist highlights a report from American Family Physician that as family practitioners in a community increase, hospital readmissions rates decrease.
John Henning Schumann on GlassHospital finds that very little gets done in a hospital on the weekends. Ultrasounds, radiology tests, physical therapy, biopsies and elective surgeries all slow down.' Does this jibe with how technological and 'efficient' health care is supposed to be?' Dr. Juliet Kottak Mavromatis reflects on privacy, ethics of informed consent and health literacy after reading The Immortal Life of Henrietta Lacks.' And should you ever need to know, Dr. Paul Auerbach shares a Brief Introduction to Search and Rescue followed by recommendations on How to Avoid Needing Search and Rescue Services.
Counseling psychologist Will Meek says, 'Many of my clients struggle with being 'off time' for major life decisions or anxious when their life course take an unexpected new turn.' Following the Path is aimed at helping people accept, adjust, and take ownership for these surprises.' On Shrink Rap, Dr. Dinah Miller recounts an interview on NPR's 'Talk of the Nation' in which she and her colleague, Dr. Steven Roy Daviss discuss emergency room care.
Them's Fighting Words
Passions, beliefs and opposing positions are well represented in this week's GR submissions.' Given the current backdrop of political divisiveness, some posts took a look at current politicians and policies and - not surprisingly - came out with diverse perspectives.
Bunny Ellerin, of Ellerin HealthMedia, shares a recent study, Online Health: Untangling the Web, which shows how people in 12 countries are using online health information.' She warns that the consequences of poor-quality health information can be' serious.' While Jacqueline, of Laika's MedLibLog, calls out one specific U.S. online resource for what she calls its 'lack of credibility and transparency.' At InsureBlog, Bob Vineyard shares some of his concerns about electronic medical records: online patient privacy/security, physician accountability for HIPAA violations, and costly upgrades and changes in software that cause disruptions in busy physician practices.'
Michael Millenson, in a Kaiser Health News guest column, opines on Newt and the Health Wonks: A Tale of Lust and Power.' David Williams, of the Health Business Blog, believes that while imperfect, the Quality Adjusted Life Year (QALY ) "is an improvement over simply measuring life expectancy.'' Carolyn Roy-Bornstein wonders about First Amendment Rights and Child Safety in her post about the recent debate in the Florida legislature over pediatricians routinely asking parents/caregivers during well- child visits 'if there is a gun in your home and if so, how is it stored?''
Greg Vigdor with Washington Health Foundation, supporter of the Healthiest State in the Nation Campaign, asks and answers with a resounding "YES" in Can 'We the People' Fix American Health Care?' But Louise Norris, of the Colorado Health Insurance Insider, wonders in her post if it's even possible for patients to be consumers.
We hope you enjoyed this week's collection of posts.' Thanks so much to all who contributed.' Next week, Better Health's Grand Rounds will be traveling to medGadget.