Healthcare companies still don’t “Get” Social Media
We came across a great article in Social Media Today, by Steve Olenski, looking at a PWC Report on the state of social media in the healthcare industry in the US. The report opens with:
“Social media is changing the nature of healthcare interaction, and health organizations that ignore this virtual environment may be missing opportunities to engage consumers.”
The report examines social engagement from the consumer’s point of view, however, the core issue is that the industry is not getting involved in conversations already existing in the social sphere.
“I realize the hospitals, pharma companies and health insurers of the world are very reticent to engage via social media for fear of all the rules and regulations that govern their every move but… at the very least you can engage people at a high level, yes?”
How does New Zealand stack up?
Steve has a great point, and this is something that can be addressed in the New Zealand healthcare industry as well. Whilst patient privacy must remain paramount, having an online community that includes both medical professionals and consumers is a step towards better engagement – breaking down the barriers of communication between “them” and “us”.
According to the report, in the US market:
“One-third of consumers now use social media sites such as Facebook, Twitter, YouTube and online forums for health-related matters, including seeking medical information, tracking and sharing symptoms, and broadcasting how they feel about doctors, drugs, treatments, medical devices and health plans.”
We added our own comment to the original blog post:
The challenge for organisations providing healthcare is to decide whether to enable healthcare professionals to listen into these channels as well as marketing and customer services teams.
LifetimeHealthDiary.com is creating a patient-centred community care record so that people living with chronic disease in their homes can collate and share health information and wellbeing with their care team and family. We are finding that insurers like this for two reasons
- they can quickly assess new applicants for pre-existing conditions by looking at their pharmacy dispensing data
- they can cut response times to trigger events by automating alerts based on critical readings (blood pressure, blood sugar etc) and so save ER admissions and anticipate problems before they become critical, thus saving money.
Want to try out Lifetime Health Diary for yourself? Get in touch
The Green Button health data idea gains traction
There have been some great ideas in the healthcare field but none so potentially powerful as the “Green Button”. first discussed at HealthCamp SFBay the idea is to set up a universal button to allow patients to share their data.
Why? Because a main obstacle to developing good personal health software is that developers need real clinical data for test purposes.
Interestingly the UK Government is working hard on “MyData Charter” which also has implications on informed consent. Read Ctrl-Shift’s paper on the subject.
1) Its ‘mydata’ programme encourages companies to release data they hold about individuals back to them, so that they can use this data for their own purposes. This is the first major Government initiative, globally, towards a changed personal data consensus: personal data is a personal asset, and individuals should have the right and ability to manage and use this asset to pursue their own goals.
2) The Government programme is also the first official recognition that there is a market for decision-making services (or ‘choice tools’ in Government parlance) that operates independently of existing markets for products and services – the market for what we call Personal Information Management Services (PIMS).
We are definitely in favour of personal control of personal data. Lifetime Health Diary is built on the principle that the patient owns the data and can share it wherever s/he wishes. Having tools available that fit recognisable standards and security criteria will help us to fit our data standards into common use.
Let the data wars begin!
Liveblogging: OMG my pancreas just texted
Image via Wikipedia
John Pettengill a type 2 diabetic. Talking at the South by Southwest Interactive conference.
#OMGdiabetic
I am a diabetic and I live with a chronic disease. 25.8 million in the US today. A diabetic looks at each meal as a carbohydrate count with high/low glycemic index. You are thinking about yoiur condition all day long and we know why lab values like A1C are important.
Some of us are bigger experts than others 17million / 67% US diabetics aren’t managing their blood sugar well. Something is systemically wrong with the system if this number are having problems. This is not to remove personal responsibility. Cost to US is enormous in healthcare costs and chronic diseases cause 7/10 deaths per year.
Why aren’t we handling it?
Can technology help us manage it?
In 21 minute segments (an average doctors visit) we talk about our health. They ask questions about our lifestyle and health. It’s isolated within the doctor’s office which is outside the normal pattern of your life (bar, office, restaurant, gym). This is 2 hours per year approx and the doctors aren’t there when we make daily decisions about our disease.
This isn’t enough for patients with chronic disease. 31% are having problems with their medication in 45-54 age bracket. Even more are dissatisfied with their eating or exercise plan. The problem doesn’t lie mostly with the areas where doctors write prescriptions…. telling them “eat well and exercise” doesn’t work. And these things are the most effective at controlling type 2 diabetes.
1/5 doctors use group visits to schedule 5 patients at once… but doctors’ time is expensive.
1/2 use individual visits with non-doctor educators (nurse, dietician)
3/4 hand out pamphlets but patients don’t need pamphlets – they need each other.
Web 2.0 will save the day?
83% of patients have looked online for information. And 57% are looking at user-generated health information.
wheelmap.org – to enable wheelchair users to get information about which places are wheelchair accessible.
curetogether – a site for migrane sufferers who share information about what causes migranes
Most diabetic tools focus on charts and graphs – testing bloodsugar and monitoring food intake. But the charts and graphs aren’t so important. Being a diabetic doesn’t make you a statistician nor does it make you interested in data analytics. They need to focus on the behaviours that create the numbers. These apps also miss the biggest point – other people aren’t in the app. Culture ‘peers’ are important. That’s the best way to change with peer support. Programmes like AA and Weightwatchers work better when there is structure in the social group as well as the programme. Support is proven to help improve health outcomes.
Diabetics try to form groups
There are 6 or 7 Twitter hashtags for diabetes #dgnow and there are forums Juvenation twodiabetes.org The things we write about validate them and do include tips and tricks. The problem with forums is it’s a bit like the wild west – you have to hunt to find things relevant to you. They aren’t rooted in YOUR day. They are high level concepts and very medical. People with chronic disease only 8% use these support group forums. We need to remake the tools to manage diabetes.
If diabetes is managed well it needs to be managed all day long – touchpoints of checking blood sugar and management decisions. It also has to be managed for ever. Chronic disease is like that. This is a very long time. But that’s why we use phrases like “One day at a time”. Reduce the day down to now and step by step.
We designed an app for diabetes
We researched why web 2.0 sucks so much for us.
- patients are isolated – by the stigma of having type2 diabetes – surrounded by people who aren’t making the same decisions and changing lifestyles
- current solutions are clinical not revolved around the patient and how her day goes
- forever is really hard.
We decided on an app – your doctor can’t come with you hour by hour – so it has to be mobile with the patient. The patient has to be surrounded by the culture of care and create a new ‘normal’ of people invested in this.
Our categories are based on the things that people already talk about and these will change over time. The focus is on the users not on the clinical diagnosis.
We present people with faces not with numbers. Charts play a role but are subservient to people who want to make a change. Looking forward not backwards at your history in numbers.
A micro network is full of people in similar situations – likeminded people. Health information isn’t for sharing with everyone in your network on Facebook. But they are ready to share with one another within the community of diabetics. One of the topics is “slipping up” and commiseration is also part of the solution. Entering data into charts doesn’t excite people. But adding the emotion behind the chart number is good “we’re happy about 110″. I woke up at a good healthy bloodsugar number. Users can gather support to get themselves back on track. ”We can do better tomorrow”.
Achievable goals offer more rewards more frequently. We structure our goals in bite-size decisions and goals made daily. We wanted to encourage snacking and ideas that may appeal to you and fit inside your life. We don’t want to give these people things they can’t do e.g. give up steaks, or go to the gym. Help them find things that work for them – walk instead of going to the gym. Mini goals that fit in YOUR life. What can I fit in today?
We focus on 3 things today. Remind me that I’m not making my sacrifice alone – users are reminded that they’re never doing this alone. We made updating quick and celebrating the small victories that lead to better management. Remember the days aren’t open ended (a user is never ‘done’). We have to cap our days – something specific that enables achievement. Maybe later raise the bar or choose harder goals.
The emotion is what motivates updates but the data is still important. People talk about this.
Conversations with doctors still happen but they’re about what daily life is about not numeric test results.
“Last week you didn’t drink any soda and you substituted a salad and went for a walk”.
More tools and Better Tools
This works for diabetes – but the heart disease patients also need help and those with Crohn’s and arthritis and MS. We need to create new solutions and new tools for these people.
How things worked in the past – it was focused on the primary touchpoint with the doctor. But chronic diseases are different they require tools that are with them every day. Mobile is for our tool. 13% more are online using phones this year compared to last. Diabetes in minority communities is prevalent as are mobile phones. Continuous and cheap support as an add-on to the doctor.
Q&A
People in charge of these projects look at the disease state in negative terms. Incentivisation is an approach – does this work?
There are interesting things online with doctors participating in forums providing clinical reason. Incentives are hard because it’s hard to frame the conversation in a way that’s believable. It could work. But it’s all about the experience.
Powerful new “Doctor becomes an e-patient” story in Journal of Participatory Medicine
The original post by e-Patient Dave appears on http://e-patients.net/archives/2011/04/doctor-as-e-patient-jopm.html
Two years ago we wrote “Let’s hear it for the ‘d-patients’” — doctors who become e-patients themselves. We said “D-patients prove that patient empowerment is anything but anti-doctor. Heck, sometimes it’s a doctor preservationmovement.”
A new article in our Journal of Participatory Medicine provides a compelling example: A Physician’s Experience as a Cancer of the Neck Patient: The Importance of Patient Participation. The author, Itzhak Brook MD, makes our point:
I am telling my personal story in the hope that health care providers will realize the difficult challenges faced by a patient diagnosed with cancer and undergoing extensive surgeries. I am also discussing the importance of active participation of the patient and their family members in all phases of care.
JoPM co-editor Charlie Smith adds, in his introductory note: (emphasis added)
You may wonder why a physician’s account of his illness and the frustrations he experienced merit publication in this journal. But, if a doctor has this degree of anxiety, this much difficulty getting information about his care and this degree of struggle making good decisions, then patients can easily understand why they feel so overwhelmed and incapable, at times, of truly “participating” in their own care. What we are advocating for is difficult in the best of circumstances and requires all hands on deck for the task!
I – and many other patients – know exactly what Dr. Brook means when he says:
…both of these approaches [physicians who acted "half full" and "half empty"] deprived me of being truthfully and fully informed about my prognosis, which is essential for making logical choices concerning treatment. I preferred those who told me the truth about risks and my prognosis, even if it was not rosy. I always voiced my preference to the physicians so that they would be aware of my wishes and so we could, hopefully, develop a trusting relationship.
When his radiation oncologists failed for five days to get the machine fixed or send him somewhere else, he asserted himself and did get sent elsewhere. He writes, “This lack of initiative left me feeling that they were indifferent to my plight.” That too will sound familiar to some.
Then, when he reported side effects and needed to be cared for:
“I needed the doctors to be there for me but, instead, they left me feeling like I was pestering them with trivial issues and complaints. Everything was so new to me. I was concerned and worried about my symptoms and looked to them for advice on how to cope. I also needed reassurance that these were expected symptoms and that they would go away afterwards. Fortunately, I found receptive ears and helpful advice from the clinic nurse.”
In my speeches I often start by saying, “Patient is not a third person word. Your time will come.” What a great example this narrative is.
There’s much more in the full article. Please, patients and providers alike, read the whole thing and think about when your time will come
Compelling lecture on clinical decision making and diagnostic error
This post was written by e-Patient Dave on March 20, 2011 and appeared on www.e-patients-net.
I think if we want to improve this aspect of medicine, it’s essential to understand the evidence presented here. It documents some of the major challenges in diagnosis, which suggest that we shouldn’t expect clinicians to be perfect and clinicians shouldn’t expect us to think they are.
The lecturer is Pat Croskerry, Professor in Emergency Medicine at Dalhousie University, Halifax, Nova Scotia. Levy’s post says:
Croskerry’s exposition compares intuitive versus rational (or analytic) decision-making. Intuitive decision-making is used more often. It is fast, compelling, requires minimal cognitive effort, addictive, and mainly serves us well. It can also be catastrophic in that it leads to diagnostic anchoring that is not based on true underlying factors.
He says we should explicitly teach decision making skills in medical training. I’ll add: if we all recognize the difficulty of perfect decisions, we can work together to improve the odds – with more participation, less blaming, and overall better outcomes. And, I hope, less unwarranted stress for clinicians who are doing the best they can.
Minority Report: Social Media for Decreasing Health Disparities
Image via Wikipedia
- Aimee Roundtree – Chair
- Jennifer McClure – President the Society for New Communications Research (SNCR)
- Sylvia Chou – Programme Director in health informatics at National Cancer Institute
- Maryland Grier – sponsorship programme at Connecticut Health Foundation
- Gregg Beets – public relations co-ordinator for HIV/STD – Texas State Health
#minorityreport or #mrsxsw
Groundwork: Minorities use social media a lot (slide) all use them more than non-hispanic whites. Healthc are disparities persist in those communities. These matter both personally and societally as they ]lead to morbidity, lost productivity and disability. When communities of colour receive low quality of care as beneficiaries of publicly funded health programmes this has a cost in terms of everyone’s healthcare. Community matters in minority helath in awareness, engagement and health behaviours.- [2 slides] and probably matters in patient activation as well. There is active resistance and suspicion about care as well in minority populations.
Maryland Grier – We decided to act as a social agent for change when the Foundation was founded in 1991. Our priority areas children’s oral health, children’s mental health and racial and ethnic health disparities REHD.[this last is challenging].
We chose the REHD for our social media program. Our objective is to create public will to decrease REHD and strategy to use social media to reach across multiple, online community platforms to engage target audiences. Our Board was very concerned with return on investment, evaluation and measurement. We found those who are impacted most by health disparities are already using social media and that helped us get the programme adopted. How to partner with a charitable foundation [slide]. more »
OMG my pancreas just texted!
John Pettengill a type 2 diabetic. Talking at the South by Southwest Interactive conference.
#OMGdiabetic
I am a diabetic and I live with a chronic disease. 25.8 million in the US today. A diabetic looks at each meal as a carbohydrate count with high/low glycemic index. You are thinking about yoiur condition all day long and we know why lab values like A1C are important.
Some of us are bigger experts than others 17million / 67% US diabetics aren’t managing their blood sugar well. Something is systemically wrong with the system if this number are having problems. This is not to remove personal responsibility. Cost to US is enormous in healthcare costs and chronic diseases cause 7/10 deaths per year.
Why aren’t we handling it?
Can technology help us manage it?
In 21 minute segments (an average doctors visit) we talk about our health. They ask questions about our lifestyle and health. It’s isolated within the doctor’s office which is outside the normal pattern of your life (bar, office, restaurant, gym). This is 2 hours per year approx and the doctors aren’t there when we make daily decisions about our disease.
This isn’t enough for patients with chronic disease. 31% are having problems with their medication in 45-54 age bracket. Even more are dissatisfied with their eating or exercise plan. The problem doesn’t lie mostly with the areas where doctors write prescriptions…. telling them “eat well and exercise” doesn’t work. And these things are the most effective at controlling type 2 diabetes.
- 1/5 doctors use group visits to schedule 5 patients at once… but doctors’ time is expensive.
- 1/2 use individual visits with non-doctor educators (nurse, dietician)
- 3/4 hand out pamphlets but patients don’t need pamphlets – they need each other.
Web 2.0 will save the day? more »
The discovery of practice variation: follow the data
This post by e-Patient Dave appeared on e-patients.net on March 11, 2011.
It is a capital mistake to theorize before one has data. Insensibly one begins to twist facts to suit theories, instead of theories to suit facts.
Sherlock Holmes, in Scandal in Bohemia
I’ve been reading Jack Wennberg’s new book Tracking Medicine, which is about his lifetime of work in understanding the reality of how medicine is practiced, as a route to helping us achieve the best care possible for each of us. My first post about this was three months ago, en route to a seminar on SDM (shared decision making); my first post after the seminar was shortly after. The whole subject has bent my thinking about healthcare so severely that it’s taken me this long to decide what to say next.
Key findings:
- Your doctors, with the best of intentions and the best of training, may unwittingly be prescribing treatments that are unnecessary for you, or not prescribing things that are. (“You” includes anyone you’re caring for.)
- This realization was developed not through people’s opinions but by looking at cold hard numbers. After controlling for all variables, the odds of a given patient getting a given treatment vary by hundreds of percent from region to region.
- For whatever reason, decades of efforts to change this have been fruitless, so the risks from unnecessary treatments continue and inappropriate care continues.
- Part of the reason is that we’re in denial (patients and providers alike), and part of the reason for that seems to be that the causes are unconscious. (See below.)
- This doesn’t mean your doctors are incompetent – the forces at play seem to be universal. The problem is that virtually nobody realizes it’s happening – neither we as consumer/patients nor the physicians.
- E-patient takeaway: If you want the best care for yourself and your family, do what you can to understand these issues and have empowered, engaged, participatory conversations with your providers.
Wennberg’s method was to crawl through databases. From the start of his book:
Early in my career, I was hired as director of a federally sponsored program whose goal was to ensure that all Vermonters had access to recent advances in the treatment of heart disease, cancer, and stroke.… As the results came in, however, rather than evidence for underuse… we found extensive and seemingly inexplicable variation in the way health care was delivered from one Vermont community to another.
This “practice variation” is described in my previous post. Today’s post presents a top-level introduction to what has taken thirty years of analysis and testing to confirm. It’s hard to imagine this is true; read the book. In short, Wennberg and his colleagues have established that healthcare decisions in reality can be categorized in three groups:
- Effective care: situations where there’s no debate – all eligible patients should get this. Example: if you have a broken hip, you should have a hip replacement.
- This is about 15% of Medicare spending.
- As a separate cause for concern (not cited in this book), other studies have found that doctors only recommend “the standard of care” about half the time. (Isn’t that amazing and eye-opening?)
- Note: this is only 15%. 85% of the time, the decision is open to consideration, and you should be presented with options.
- Elective or “preference-sensitive” care: there’s more than one option, and outcomes vary depending on which option you choose.
- This is about 25% of Medicare spending.
- Includes decisions about some surgery, and some screening tests.
- These decisions are preference sensitive – they have different quality of life (QOL) implications, so the “right”decision for proper care cannot be made without knowing the patient’s preference. You should be asked.
- Example: if you have an enlarged prostate, one option is to just keep an eye on it (“watchful waiting” or “active surveillance”). The surgical option has significant risk of side effects: impotence, leakage, other issues. Years of research has shown that the importance of each side effect varies widely by patient. The correct decision can’t be made by the doctor alone.
- But many (perhaps most?) clinicians don’t present us with the range of options – they make the choice for us (perhaps with the best of intentions) and then ask our consent. (This is the “informed consent” form we’re asked to sign.)
- Most patients don’t know about this, so they don’t ask and they don’t get involved with decisions. But when the options and trade-offs are presented, people often opt not to have surgery. That’s informed choice, vs informed consent.
- Here’s something to think about: some people at the Foundation for Informed Medical Decision Making (FIMDM) proposes that operating on a patient without knowing their preference risks as much of a medical error as operating on the wrong limb!
- Supply-sensitive care: 60% of Medicare spending (sixty percent!)
- As described in the previous post, in a majority of cases your likelihood of having a treatment recommended is proportional to how available it is in your area - not related to your need. Even the chance that your death will occur in an ICU is proportional to the supply of ICU beds in your area.
- Yes, there is vast historical evidence for this. (See Sherlock Holmes above.
“Supply-sensitive care” smacks of Parkinson’s Law (“Work expands so as to fill the time available for its completion,”), or, according to Wikipedia, a generalization: “The demand upon a resource tends to expand to match the supply of the resource.” Indeed, a similar law, Roemer’s Law, is widely accepted by people I’ve talked to: “A bed built is a bed filled.” (No matter how much hospital capacity you build, it’ll get used up.)
And the doctors who recommend that we be hospitalized to the gills generally don’t realize they’re doing it.
Think this is a complaint about American healthcare? It’s not. For instance, in 1992 it was noted in the Netherlands: http://www.ncbi.nlm.nih.gov/pubmed/1600289
e-Patient take-aways – Things for engaged / activated patients to realize:
I can’t overstate the importance of realizing this as we approach any decision about a treatment, especially surgery. It’s especially important to realize that your own physician, with the best of intentions, may not be aware of the invisible influences driving the treatment recommendations of his or her peers in the local community.
It seems clear to me that we must, must, must create discussion tools – an index card, a flyer, a website – from a respected source to help clinicians listen when we ask, “is this treatment necessary?” And ask for help inresearching the rationale for the decision, including researching the relative frequency of recommending it in other hospital referral regions.
We need to educate clinicians, patient advocates, insurance companies and health plans, and each other about this issue. What’s at stake is patient safety: every hospitalization and treatment carries a risk of harm as well as the possibility of improvement. I’ve heard from many people that their physicians are sometimes offended when patients ask. (Of course, many other physicians aren’t.) We need to stand up for our rights to be responsible for what happens to our bodies.
The Healthcare IT Puzzle: Something is missing… “Oh yes, the patient!”
What does “patient-centric” really means? – that was one of the questions addressed during the interactive Roundtable organized by the Institute of Federal Health Care and Lifetime Health Diary in Washington, D.C. on March 4.While it’s now generally agreed that the patient should have access to his/her own health records and control them, it seems as though our healthcare system is not designed with the patient in mind. Not only does it ignore the patient as a stand-alone and the most responsible decision-maker in the healthcare value chain, it also fails to provide ways for collaborative decision-making by all parties involved in the care of an individual. How do we change and redesign the system so the patient is in the middle? How do we address gender and race differences when delivering care to make it more specific to each group? How do we make delivery of care more adequate when treating chronic illness patients, undeserved communities members (Latino, HIV/AIDS, mental health, etc.)? Finally, how do we initiate a behavior change in the patients?
All these questions were addressed and discussed last Friday by a very diverse group of participants where everyone came with his/her own personal story to share about the inability of obtaining the health records in the most critical moment in life (e-Patient Dave and Regina Holliday), frustrating birth experience where the “care team” does not corroborate decisions made by the patient (Lygeia Ricciardi), lack of transparency in the healthcare and inadequate care delivery to diabetes patients (Amy Tenderich), and other touching stories once again proving that changes in the healthcare system should be made “right now and right here”.
I think because we had such a diverse group of people with different backgrounds (government, patient advocates, enterprise, academia) but evenly passionate about healthcare transformation, the Roundtable turned into a very insightful and productive event. I think one of the most exciting and memorable moments for me was when Regina Holliday offered to re-configure the room. Yes, we all were talking about a need for a behavior change, yet, no one except for Regina realized that the change should be made “right now and right here”. And this is where an official government room with neatly set tables and chairs turned into an informal discussion where everyone could easily face each other without having any barrier and obstacles. As Ted Eytan mentioned in his blog “The patient in the room changes everything. Everything”.
Viva la Patient!
Please visit Flickr to view more picture and videos from the event.
“The Biggest Wasted Resource in Health Care? You.” via ABC News
Here is a great new post by Roni Zeiger (Google Health) on ABCNews.com. A very encouraging and inspiring piece from the doctor who actually welcomes the “third person” in a care room – the internet. An informed patient is an armed patient. Do your homework, prepare questions for the doctor, realize the importance of your kids health data and your own, take charge of it and increase the chances of getting the right decisions from your healthcare professional.
However, only being a smart consumer of health information benefits all the parties involved in the care, and truly empowers the patient. “Consuming” all the health information online via Twitter, Social Networks, Online Patient Groups and Health portals can be quite overwhelming. Moreover, reading without filtering does not lead to an empowerment; instead, it harms the recipient.
The video below brings up some excellent statistics as well as an example of how misleading, low-quality health information can reach almost 1 million people (and potentially harm us) in a few hours after posting powered by the social networks such as Twitter
