Health Care Consumerism: Patients Still Lack Agency at the Point of Care | Health care and the digital revolution
From the 27 January 2013 post at Health care and the digital revolution – A graduate student’s take on health care going digital – Claudia Paz
Something we have been hearing a lot of lately is how this is the moment for the healthcare consumer (see, Bloomberg Review video, MedCity Article, Forbes article on trends to be excited about). Basically, people are noting that EMR’s and patient portals, the proliferation of health and wellness related mobile apps, and greater transparency across the system, will all lead to a new age of health care where patients have the information and tools to savvily navigate a streamlined healthcare delivery system oiled by customer reviews, online tools, and digital gadgets. Think Yelp and MenuPages meets healthcare.
While all of the trends listed above are exciting leaps forward, not enough attention is being paid to the patient’s needs at the point of care. Research on patient activation andshared or participatory decision making all points to the following:
Empowered patients who actively participate in decisions about their health and treatment options are more likely to be compliant with their medications, make less risky and more cost effective decisions, and are more confident in the management of their health outcomes.
For the purposes of this blog, I am focusing on the concept of a patient as an active participant at the point of care. From my own personal experience, it seems that “doctor knows best” remains the dominant paradigm. Instead of having a conversation about treatment options, the pros and cons of alternatives, variations in costs and side affects, I am more often than not prescribed a medication or treatment option and sent about my day. If I feel like knowing more about the medication (that I have already agreed to take), I usually conduct research after the appointment.
Quite a few of my blog postings encourage folks to be well informed in making health care decisions.
However, I do agree with the author of this post – use your information to consult with a health care provider. (I believe even e-patient Dave believes in discussing what he has researched with his physicians) These professionals at the very least are to be viewed as consultants. Please meet with them when considering taking strong actions, as discontinuing a medication based on what you read on the Internet (even trusted resources I quote !)
Lately, I get the feeling that I’m doing something wrong. I’m supposed to form a partnership with my patients. My patients are supposed to be the working partner and I’m supposed to be the consulting partner.
My job as the consulting partner is to offer sagely medical advice to the boss (working partner). As a consultant, I’m supposed to help in the making of key decisions, find the appropriate tools to help make the boss healthy and happy, and instruct the boss in how to implement those tools should he decide to follow my advice.
As the boss and working partner, my patient is supposed to weigh his options, institute those procedures and treatments as prescribed and to keep me updated on how he is doing. His job should also entail reviewing key health decisions with me prior to making changes in his overall healthcare.
Lately, my patients have been making unilateral decisions. In other words, they have not been consulting with me, their doc, prior to changing or stopping their medications or other treatments. While it is well within their rights to institute or stop any medical intervention on their own, it is often wiser to utilize the services of a trained consultant/doc……
- Who is Biz Stone and What is Twitter? (by Fred Trotter at the Health Care Blog)
HIMSS, and in many cases traditional health IT along with it, is experiencing something of a whirlwind. One force adding wind has been the fact that President Obama has funded EHR systems with meaningful use, and made it clear that the future of healthcare funding will take place at Accountable Care Organizations (ACO) that are paid to keep people healthy rather than to cover procedures when they are sick. It is hard to understate the importance of this. Meaningful Use and ACOs will do more to computerize medicine in five years than the previous 50 years without these incentive changes.
But in the same breath, we must admit that the healthcare system as a whole is strained and unable to meet the needs of millions of its patients. The new force in healthcare is peer to peer medicine. There are really only a few things that doctors provide to patients. They either provide treatment, or they provide facts, or perhaps, they provide context for those facts. More and more, patients are seeking facts and context for that information, from the Internet generally and other patients specifically. This can be dangerous, but when done correctly it can be revolutionary .
It’s not rocket science really; our culture has changed. Baby boomers still wonder if it is OK to discuss sexual issues in polite company. Their kids blog about their vasectomies. It’s not just that we blog about vasectomies. We read blogs about vasectomies and consider it normal….
For whatever reason, the epatient community centers around Twitter. More than likely this is because of the fundamentally open nature of this network. Although it is possible to “protect” tweets, most account holders tend to tweet to the whole world. If you are interested in a particular health-related issue, you can use Twitter to find the group of people who are discussing that issue. Twitter is a natural way for people who are connected by a common thought or issue to organize. Facebook, on the other hand, is about connecting with people you already know. The famous quote applies: “Facebook is about people you used to know; Twitter is about people you’d like to know better.” You could change that quote to read “Twitter is about people you’d like to know who have had vasectomies.”..
- Can an App a Day Keep the Doctor Away? (2010 closing interactive panel of the National Conference on Health Communication, Marketing, and Media) (jflahiff.wordpress.com)
- Consumers can have greater control over spending on health than previously thought (jflahiff.wordpress.com)
- The rise of citizen scientists and patient initiated research (jflahiff.wordpress.com)
- Patient engagement is the holy grail of health care (kevinmd.com)
’ve been involved in clinical medicine for more than 20 years and during this time I’ve come across numerous situations that created stress, or emotional upheaval within myself, and even times of burnout. At one point, I came close to permanently leaving my chosen profession. The culture of medicine is not geared towards allowing health care providers to de-stress, acquire emotional support, or discuss in an encouraging environment various conflictive work scenarios with their colleagues. The end result of this culture of medicine leads providers to either leave their chosen profession, have professional burnout, deal with work conflict and/or become emotionally broken (i.e. having a lack of integrity, honesty, emotional connectedness with others, etc.)
An example of medicine’s culture which needs to be changed and causes conflict is one of its many unwritten rules of professional conduct. It states that the hospital attending is the only one who is supposed to go in and tell a patient their medical diagnosis and treatment. Anyone else on the medical team is just supposed to pretend as though they don’t know anything until after the attending has discussed the diagnosis with the patient. Usually this works out, but it can also lead to a breakdown in patient’s trusting their providers and/or asking team members to lie to patients until the attending has this discussion. This can lead to dishonesty and a lack of integrity on the part of the providers…..
- The culture of medicine needs to change (kevinmd.com)
- Short waits, long consults keep most patients very happy with their physicians (Eureka news alert)
- Intuition saved this patient from a potentially fatal diagnosis (kevinmd.com)
- 6 reasons why doctors won’t call patients (with possible solutions) (jflahiff.wordpress.com)
- Patients have a part to play in their own medical care (kevinmd.com)
e-patient Dave de Bronkart was successfully treated for kidney cancer at a very late stage. He credits his recovery to using the Internet to find trusted medical information as well as to get advice from patients via support groups.
His video Let Patients Help outlines how and why patients should empower themselves.
Some video highlights
- Patients are presently the most underutilized part of the health team
- The e-patient movement is at least partly based on hippie ideals of self-reliance and self-care (think Whole Earth Catalog)
- e-patients are empowered, engaged, equipped and enabled through finding information to use in discussions regarding treatment options with their health care providers
- Support groups often are useful in providing information not available at other sites (as which doctors specialize in certain treatments)
- Patients not only need quality information, but also access to their raw medical data
How to evaluate medical and health information
- Evaluating Internet health information (Penn State)
- Evaluating Medical Research Findings and Clinical Trials (Family Caregiver Alliance)
- A Consumer’s Guide to Taking Charge of Health Information (Harvard Center for Risk Alliance)
- Evaluating Health Information on the Internet (National Cancer Institute)
- Quackwatch: Your Guide to Quackery, Health Fraud, and Intelligent Decisions (Stephen Barrett, M.D.)
Great starting places for quality health and medical information
- MedlinePlus (US National Library of Medicine/National Institutes of Health)
Links to information on over 700 diseases/conditions, drugs & supplements, videos & tools (as health calculators, anatomy videos, directories (as Find an Eye Doctor), and links to organizations
- UpToDate For Patients
Click on the Patient Information tab to find free information written for patients. These topics help one to learn more about a medical condition, better understand management and treatment options, and have a better dialogue with health care providers. This free information is adapted from the subscription based service UpToDate (which is for and by physicians and researchers).
- US Centers for Disease Control and Prevention (CDC)
Includes Health Topics A to Z, and sections as Diseases and Conditions as Healthy Living
- eMedicine Consumer Health
Comprehensive continuously updated health and medical information written by physicians. Information on specific diseases/conditions includes overviews, causes, diagnosis, treatments, outlook, and additional links. Slideshows, images, pictures,medications, and quizzes.
emedicine.com is geared towards health professionals. However it is free to all who register.
- But Wait, There’s More!
- Online consumer health guides, as Consumer Health (University of Toledo), Consumer Health (University of Florida), Consumer Health Guide (University of California)
Libguides are written by librarians on every subject imaginable. They are free to all.
- Never underestimate the finding power of a librarian.
Many academic and medical institutions offer at least some reference services to the general public. Be sure to ask for a reference librarian. He or she not only has a master’s degree in Library Science, but often additional related education in health related areas.
Online Health Communities/Support Groups
- Self-Help Group SourceBook Online
A starting point for finding every type of national, international, model and online self-help support group that is available starting point for finding every type of national, international, model and online self-help support group that is available. (MentalHelp.net)
Search with a phrase as “support groups” cancer or select a Health topic and select an organization.
- Medpedia communities
This site allows people with common health interests to share information and communicate. Anyone may create a community of interest and anyone may join.Medpedia is an open platform connecting people and information to advance medicine. Users include health care professionals, health care organizations, expert lay persons, students, and scientists.
- MedHelp International
This online health community which not only provides health information but helps patients actively manage their health through online personal health records andMedhelp trackers (iphone friendly options).
The People option allows one to search by a disease or condition to find related information (including symptoms, treatments, resources). One can also view postings and blogs by other members and interact with them.
Medical experts helps users by answering questions in Ask-an-Expert forums, participating in conversations with members in free live health chats, and sharing their knowledge and the latest news in blogs
- Mayo Clinic Online Community is “ free and is open to anyone, whether you have been a patient at Mayo Clinic or not. It includes content from various Mayo Clinic blogs,health and medical videos from Mayo’s YouTube channel and links to news articlesabout Mayo Clinic research and treatment advances. It also features a discussion forum where members can connect with others who have similar interests or concerns.”
A few related postings from my blog
- [How to] Explore Your Treatment Options
- Free Online Anatomy Sites
- How to obtain free/low cost articles from medical journals
- Plain language summaries Web sites explain medical studies for all
From the press release
The number of bloodstream infections in intensive care unit patients with central lines decreased by 58 percent in 2009 compared to 2001, according to a new CDC Vital Signs report. During these nine years, the decrease represented up to 27,000 lives saved and $1.8 billion in excess health care costs. Bloodstream infections in patients with central lines can be deadly, killing as many as 1 in 4 patients who gets one….
“Preventing bloodstream infections is not only possible, it should be expected. Meticulous insertion and care of the central line by all members of the clinical care team including doctors, nurses and others at the bedside is essential. The next step is to apply what we’ve learned from this to other health care settings and other health care-associated conditions, so that all patients are protected,” said Thomas R. Frieden, M.D., M.P.H., CDC director.
In addition to the ICU findings, the report found that about 60,000 bloodstream infections in patients with central lines occurred in non-ICU health care settings such as hospital wards and kidney dialysis clinics. About 23,000 of these occurred in non-ICU patients (2009) and about 37,000 infections occurred in dialysis clinics patients (2008).
“This reduction is the result of hospital, local, state and national medical and public health efforts focused on tracking infection rates and then using that information to tailor and evaluate prevention programs,” said Denise Cardo, M.D., director of CDC’s Division of Healthcare Quality Promotion. “The report findings point to a clear need for action beyond ICUs. Fortunately, we have a prevention model focused on full collaboration that can be applied broadly to maximize prevention efforts.”
Infections are one of the leading causes of hospitalization and death for hemodialysis patients. At any given time, about 350,000 people are receiving hemodialysis treatment for kidney failure. Seven in 10 patients who receive dialysis begin that treatment through a central line….
- Patient Safety Awareness Week 3: Positive News on Infections, More Work Needed (hcfama.org)
- Rates of Pneumonia Dramatically Reduced in Patients on Ventilators in Michigan Intensive Care Units (nlm.nih.gov)
- Challenges In Stemming The Spread Of Resistant Bacteria In Intensive Care
- Simple Cotton Swab Slashes Reduce Post-Op Infection (Medical News today, June 2011)
- Infection Risk Lurks in Hospital ICUs (webmd.com)