e-health
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
New “body browser” tool
Got a sneak preview of a Google tool called “Body Browser” thanks to Desiree Miloshevic from #webGLCamp2 .
Watch the video.
Now how do you think this might fit into the Lifetime Health Diary App?
Suggestions Please
Social media and pharma – the journey so far
I first “met” Rob Halkes on the Hospice and Palliative Medicine twitter discussion group – it meets and discusses at 8pm every Wednesday evening Central Time for an hour and chats all week under the hashtag #hpm.
Rob just published his latest slide deck on healthcare and social media. It has 45 slides crammed full of value.
Read it.
P.S. I put a quick comment on the deck that said
“Great summary, Rob. This clearly summarises the journey-so-far for pharma and patient engagement. What you could add is the next generation of applications which are being designed and built around the patient rather than the doctor/clinic/drug/pharma which will shift the balance of power from a communications perspective firmly towards the patient and away from Pharma and Physician. #VRM”
Time to take control of the situation…”e-patient advocates”
Every now and then I come across patient’s stories describing terrifying experience with our healthcare system, and stories on how this experience motivated them to become e-patients – engaged, empowered and educated. I am talking about people such as e-patient Dave , Trisha Torrey, Regina Holliday, and many more: people who experienced unfairness of a healthcare delivery, who were treated for something what was not there, people who struggled for their loved ones in order to obtain an appropriate care. Some – failed, unfortunately, others – succeeded. But no matter of the outcomes, they all became active “patient advocates” who are trying (successfully) to empower thousands of others, who are struggling to receive adequate care, obtain their records, who are getting in those “holes” of our health system where infinite medical errors and oversights occur during diagnosis (e.g. 1 out of 4 times the diagnosis will be wrong according to the report of the Agency for Healthcare Research and Quality), or treatment (medication side effects, drug interaction), or hospital admission/discharge, or during handoff process which occurs 4,000 times a day! Yes, seems like there are more opportunities for the mistakes than for accurate decisions…
And health professionals should not be blamed for this either. There are many stories out there where the nurses, or physicians, or surgeons saved thousands of patients’ life, and cured incurable.
What should be radically changed though is our inefficient healthcare system, not suitable for chronic patients, for people with disabilities, for retired employees, etc.; well.. Honestly it is not suitable for anyone, with its myriads of disparate silos, lack of standardized process in the hospitals, nursing homes, clinics, etc., lack of communication between patients and the doctors, doctors and nurses, primary and secondary care, and so on so forth.
However, what keeps me optimistic about our healthcare system, and gives me some hope it can be changed soon, can become more patient-centered is these “patient advocates” who through themselves out there and do what has to be done. Thus, recently, I came across the post by Elizabeth Cohen (CNN) and terrifying story about her baby-girl, which shows how lack of communication between health professionals within a single institution could take a life of a new-born baby, and how important it is for the caregiver (in this case – a mother) to take a charge of the situation and fix it before something bad happens.
So, the question is how long will it take for us, patients, (and, will it happen at all! or do we want it?) to start finally relying on our healthcare system without worrying much about following up on and checking every step made by our health professionals during the time we are seeking for health care?
Whose rules for accessing personal health data?
Last week a couple of us attended a workshop in Dunedin put on by the National Health IT Board (New Zealand).
Graeme Osborne, who led the workshop as the Board Representative, correctly observed that “Health IT is hard because it is a reflection of a culture and its beliefs.” Correct, and in a multi-cultural society, you have multiple sets of social norms and individual expectations.
Everyone wants a break-glass policy whereby all their personal data can be accessed in an emergency situation, but no-one wants any random clinician or health worker to be able to see certain things about their health (mainly related to mental, sexual and genetic health details). This makes it really difficult to create national standards with a single privacy/access rule. Different people and different cultures hold different viewpoints as to what should be easily accessible.
New Zealand national health IT policy has 3 objectives, but like most of the rest of the world only 2 of these objectives are really being concentrated on at a national level. They are both to do with linking Primary, Secondary and Tertiary care by data standards.
1) That every health organisation collects patient healthcare information.
2) That health results are made available to clinicians.
3) A personal health record for all New Zealanders by 2014.
The third point seems to be so contentious that it is essentially being left to marketplace innovation to see if anything practical may result.
While there may be some default settings in terms of clinical data made available to other clinicians involved, I believe that transferrable and accessible health data can only work if individuals are empowered to control their settings. But there is a lot of patient education that has to happen before most people in society are even aware of all the pertinent issues so they are able to make the right choices.
Which is why at Lifetime Health Diary™ we are working with communities. Not only does this allow people to discuss with peers and people they respect to guide them through the minefield of information rights inherent within Health IT, but as the CIO of a large hospital here in New Zealand recently told me “No matter how good the data within my hospital is, 90% of healthcare takes place out in the community, and I see 0% of that”. Well said. National data standards cannot collect data that is not part of the system to begin with!
So whose rules for accessing health data? The individual, informed by communication with their community, which in turn need representatives who understand the issues and communicate with the national health bodies responsible for data standards. A little bit of effort expended in this area may return a lot more back to the health system in term of engagement from people than yet another clinical data sharing standards project.
Yours in health,
Hamish
Are you ready to find out what your doctor is saying about you?
I personally like the idea of a doctor sharing his notes with the patient. So many other people do. That is why a year-long OpenNote project kicked in few weeks ago to find out if this transparency can facilitate doctor-patient communication, educate individuals about their own health and improve health outcomes. The team of nurses, physicians and 25,000 patients at Beth Israel Deaconess, Geisinger Health System in Danville, Pa., and Harborview Medical Center in Seattle got seriously involved in the project. Peer-review evaluation by both doctor and patient is to come.
There are two sides of this “coin” being discussed. One is sharing the notes with the patients will improve their understanding of health, empower, educate and engage them more while adding transparency. Another is sharing the notes may lead to confusion and panic on the patient side. Thus, because of a specific terminology and abbreviations, individuals may take doctor’s notes in a wrong way. For example, OD does not mean overdose, but rather oculus dexter, or right eye.
It is said this system of sharing the notes will benefit those who have many medical problems and visit doctors quite frequently. It will let them be well informed about their health, ask questions and follow the medication and lifestyle regime prescribed by the doctors. Yet, I quite disagree with that. I do believe it will benefit those who do a general once-a-year check up – someone like me. If I do not understand the term I always can go online and check it, so other can.
More information on OpenNote project:
Patient-centered healthcare – so where is the patient?
Sometimes you almost feel sorry for those in the medical industry trying hard to make healthcare more patient-centric. Pauline Chen M.D. writes in her latest blog post about the adoption of “Patient Medical Homes”. Designed to help patients see a full suite of caregivers under a single roof, they turn out to have often made patients feel dissatisfied and unsure.
Once again it turns out that patient perspectives were largely ignored and the Patient Medical Homes were designed by medical experts, with the ironic results of unhappy patients! What should be a great initiative misses the boat without patient involvement and feedback. Pauline writes “In working so hard to adopt changes on their patients’ behalf, clinicians had temporarily lost their focus on the patients themselves.”
Gosh, sounds a lot like the design of Electronic Health Records doesn’t it? One of the big surprises for me as I embarked on a study of healthcare delivery to help build Lifetime Health Diary™ was the apparent disinterest, even outright dismissive attitude that so many clinicians have in accepting “patient inputs” to Electronic Health Records. After all, in their view that would be “unreliable data”.
Perhaps it would be unreliable at a clinical level, but that doesn’t mean patient inputs should not be collected and taken note of. So many physicians have told me that “clinicians think in stories”. Even surgeons in the emergency-filled requirements of an ICU. It begs the question, “whose story?”. How can that story possibly be represented in a 15 minute consultation, or read off the chart of a patient in a hospital bed? It can’t and it never will be. Evidence Based Medicine may help define best practice clinical pathways, but it does nothing to make me the patient feel that my own story is being understood or even cared about.
In fact, what would happen if a significant amount of patient inputs were found to be reliable? Perhaps in some situations even more reliable than clinical data? Certainly at least for chronic illnesses it seems obvious that gains in patient engagement in terms of monitoring their lifestyle would likely outweigh any consideration of “non-clinical” patient inputs being collected and noticed in the first place.
So we shouldn’t really feel too sorry for most clinicians making the effort to be more patient-centric, because until that actually includes genuine patient inputs in the form of structured data (not just side notes) “patient-centric” is all too often just medical code for “clinician-centric opinion about the patient”.
In health,
Hamish MacDonald
