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Tag: e-patients

In Praise of Lisa Bonchek Adams, Breast Cancer Expert


The two columns by Bill and Emma Keller about Lisa Bonchek Adams unleashed fury this week from supporters who questioned the manner in which Adams, who has metastatic breast cancer, “lives her disease” through her blog and Twitter feed.

Amid reams of articles, blogs, tweets and Facebook posts, patient advocate and breast cancer survivor posted Liza Bernstein grabbed our attention for posting a brilliant yet simple observation. Responding to an article in Gigaom, Bernstein noted that Bill Keller wrote this of Adams:

“Her digital presence is no doubt a comfort to many of her followers. On the other hand, as cancer experts I consulted pointed out…”

And Keller went on to describe what those experts thought.

Bernstein and other e-patients know well that Lisa Adams is an expert. In her response, Bernstein said that while Adams “is not a doctor or a researcher, [she] is a highly engaged, empowered, and educated patient who, as far as I know, has never shared her story lightly.”

Perhaps unintentionally, Keller’s supposition that Adams is a “comfort” to other patients compared with the analysis he provides from “cancer experts” marginalizes what people like Adams bring to others affected by cancer.

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* Patients Not Included

A few weeks ago, I went for the first time to Stanford’s Medicine X conference. It’s billed as a conference that brings a “broad, academic approach to understanding emerging technologies with the potential to improve health and advance the practice of medicine.”

Well, I went, I saw, and I even briefly presented (in a workshop on using patient-generated data).

And I am now writing to tell you about the most important innovations that I learned about at Medicine X (MedX).

They were not the new digital health technologies, even though we heard about many interesting new tools, systems, and apps at the conference, and I do believe that leveraging technology will result in remarkable changes in healthcare.

Nor were they related to social media, ehealth, or telehealth, even though all of these are rapidly growing and evolving, and will surely play important roles in the healthcare landscape of the future.

No. The most remarkable innovations at MedX related to the conference itself, which was unlike any other academic conference I’ve been to. Specifically, the most important innovations were:

  • Patients present to tell their stories, both on stage and in more casual conversational settings such as meals.
  • Patient participation in brainstorming healthcare solutions and in presenting new technologies. MedX also has an ePatient Advisors group to help with the overall conference planning.

These innovations, along with frequent use of storytelling techniques, video, and music, packed a powerful punch. It all kept me feeling engaged and inspired during the event, and left me wishing that more academic conferences were like this.

These innovations point the way to much better academic conferences. Here’s why:

The  power of patient presence

I wasn’t surprised to see lots of patients at Medicine X, because I knew that the conference has an e-patient scholars program, and that many patients would be presenting. I also knew that the director of MedX, Dr. Larry Chu, is a member of the Society of Participatory Medicine. (Disclosure: I’ve been a member of SPM since last December.)

I was, on the other hand, surprised by how powerful it was to have patients on stage telling their stories.

How could it make such a difference? I am, after all, a practicing physician who spends a lot of time thinking about the healthcare experience of older adults and their caregivers.

But it did make a difference. I found myself feeling more empathetic, and focused on the patient and family perspective. And I felt more inspired to do better as a physician and as a healthcare problem-solver.

In short, having patients tell their stories helped me engage with the conference presentations in a more attentive and meaningful way.

Now, some will surely be tempted to wave this off as a gauzy touchy-feely experience that is peculiar to the fruit-cakes of the Bay Area; a nice conference touch that isn’t materially important to the purpose of an academic conference.

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What Do Patients Really Think? A Report From the Third Annual Health Privacy Summit

Health reform activists and privacy mavens have been at loggerheads for years. Those touting health reform complain that an oversensitivity to privacy risks would hold back progress in treatments. Running in parallel but in the opposite direction, the privacy side argues that current policies are endangering patients and that the current rush to electronic records and health information exchange can make things worse.

It’s time to get past these arguments and find a common ground on which to institute policies that benefit patients. Luckily, the moment is here where we can do so. The common concern these two camps have for giving patients power and control can drive technological and policy solutions.

Deborah Peel, a psychiatrist who founded Patient Privacy Rights, has been excoriated by data use advocates for ill-considered claims and statements in the past. But her engagement with technology experts has grown over the years, and given the appointment of a Chief Technology Officer, Adrian Gropper, who is a leading blogger on this site, PPR is making real contributions to the discussion of appropriate technologies.

PPR has also held three Health Privacy Summits in Washington, DC, at the Georgetown Law Center, just a few blocks from the Capitol building. Although Congressional aides haven’t found their way to these conferences as we hoped (I am on the conference’s planning committee), they do draw a wide range of state and federal administrators along with technologists, lawyers, academics, patient advocates, and health care industry analysts. The most recent summit, held on June 5 and 6, found some ways to move forward on the data sharing vs. privacy stand-off in such areas as patient repositories, consent, anonymization, and data segmentation. It also highlighted how difficult these tasks are.

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Medicine in Denial: What Larry Weed Can Teach Us About Patient Empowerment

[This post is the third and final part of a commentary on “Medicine in Denial,”(2011) by Dr. Lawrence Weed and Lincoln Weed. You can read Part 1 here and Part 2 here.]

It seems that Dr. Larry Weed is commonly referred to as the father of the SOAP note and of the problem list.

Having read his book, I’d say he should also be known as the father of orderly patient-centered care, and I’d encourage all those interested in patient empowerment and personalized care to learn more about his ideas. (Digital health enthusiasts, this means you too.)

Skeptical of this paternity claim? Consider this:

“The patient must have a copy of his own record. He must be involved with organizing and recording the variables so that the course of his own data on disease and treatment will slowly reveal to him what the best care for him should be.”

“Our job is to give the patient the tools and responsibility to organize the knowledge and slowly learn to integrate it. This can be done with modern guidance tools.”

These quotes of Dr. Weed’s were published in 1975, in a book titled “Your Health Care and How to Manage It.” The introduction to this older book is conveniently included as an appendix within “Medicine in Denial.” I highlighted it this section intensely, astounded at how forward-thinking and pragmatically patient-centered Dr. Weed’s ideas were back in 1975.

Thirty-eight years ago, Dr. Weed was encouraging patients to self-track and to participate in identifying the best course of medical management for themselves. Plus he thought they should have access to their records.

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Hacking Healthcare

There are two definitions of the word “Hacker”. One is an original and authentic term that the geekdom uses with respect. This is a cherished label in the technical community, which might read something like:

“A person adept at solving technical problems in clever and delightful ways”

While the one portrayed by popular culture is what real hackers call “crackers”

“Someone who breaks into other people computers and causes havok on the Internet”

People who aspire to be hackers, like me, resent it when other people use the term in a demeaning and co-opted manner.  Or at least, that is what I used to think. For years, I have had a growing unease about the “split” between these two definitions. The original Hackers at the MIT AI lab did spend time breaking into computer resources… it is not an accident that the word has come to mean two things.. It is from observing e-patients, who I consider to be the hackers of the healthcare world, that I have come to understand a higher level definition that encompasses both of these terms.

Hacking is the act of using clever and delightful technical workarounds to reject the morality embedded default settings embedded in a given system.

This puts “Hacking” more on the footing with “Protesting”. This is why crackers give real Hackers a bad name. While crackers might technically be engaged in Hacking, they are doing so in a base and ethically bankrupt manner. Martin Luther King Jr. certainly deserves the moniker of “protester” and this is not made any less noble because Westboro Baptist Church members are labeled protesters too.

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Do Our Cells Have Their Own IP Address Yet?

In the future, implanted chips will have the ability to stop food absorption when caloric intake reaches 2200. Cells in our forearm will be able to monitor our glucose levels and adjust our insulin appropriately. These implantable cells or “chips” have their own IP address with their own circuitry that is connected to a network 24/7. Through this network, cells communicate with real-time super computers to synthesize the next step for an individual’s body. If Dr. Anthony Atala can utilize 3D printers to create a new kidney, then it is only a matter of time before we can incorporate the circuitry within an organ necessary to monitor its function wirelessly.

This was the future I was challenged to paint in my talk at TEDMED 2012 at the Kennedy Center for the Performing Arts in Washington, DC. With the conclusion of  TEDMED 2013 last week, I ask myself, where are we one year later?

A caveat: The following are simple overviews on novel technologies I had been tracking over the past year and does no justice to the many amazing leaps we have made in innovative science and medicine during this time.

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What Will Tomorrow’s Doctor Look Like?

“What does the 21st Century Physician look like?”

Lisa Fields (@PracticalWisdom) cc’ed me on a tweet about this; it’s the featured question at www.tomorrowsdoctor.org, an organization founded by three young professionals who spoke at TEDMED last year.

I’ll admit that the question on the face of it struck me as a bit absurd, especially when juxtaposed with the term “tomorrow’s doctor.”

Tomorrow’s doctor needs to be doing a much better job of dealing with today’s medical challenges, because they will all be still here tomorrow. (Duh!) And the day after tomorrow.

(As for the 21st century in general, given the speed at which things are changing around us, seems hard to predict what we’ll be doing by 2050. I think it’s likely that we’ll still end up needing to take care of elderly people with physical and cognitive limitations but I sincerely hope medication management won’t still be a big problem. That I do expect technology to solve.)

After looking at the related Huffington Post piece, however, I realized that this trio really seems to be thinking about how medical education should be changed and improved. In which case, I kind of think they should change their organization’s name to “Next Decade’s Doctor,” but I can see how that perhaps might not sound catchy enough.

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Health Care Social Media – How to Engage Online Without Getting into Trouble

“Why do you rob banks?”

“That’s where the money is.”

The legendary bank robber Willie Sutton, when asked, gave this straightforward response explaining his motivation.  A similar motivation may be ascribed to the early adopters among health care providers who have established beachheads on various social media properties on line.  Why be active in on line social networks?  That’s where the people are: patients, caregivers, potential collaborators and referral sources, like many, many other people, are using social media more and more.  Facebook has become nearly ubiquitous, and its user base is growing not only among the younger set, but also among the older set, who are signing up so they can see pictures of their grandkids.  In today’s wired society, on line social networking is the new word of mouth.  Word-of-mouth referrals, personal recommendations, have always been prized; we have simply moved many of those conversations on line.

Over half of Americans rely on the internet when looking for health care information.  Many on line searches are conducted on behalf of another person.  Most people expect their health care providers to be on line, providing trustworthy information – and the day of the static website has passed.  In addition, a growing subset of the population is comprised of “e-patients” – the “e” stands for educated, engaged and empowered – who seek out health care providers prepared to engage with them both in person and on line.

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Pre-Conferences kick off Health 2.0

We were coding up a storm yesterday (Saturday) at the Health 2.0 Developer Challenge Code-a-thon and that goes on today–you can even stop by the PariSoma Loft to see the live judging at 3pm — with $13,000 in prizes on the line.

But the main act is starting up TODAY with 4 fabulous pre-conferences.  Don’t forget these are FREE to anyone registered to attend the main conference and to doctors, patients and employers as appropriate for their sessions. There’s also an Innovation Exchange with the Beacon Communities which has some public availability.

The Pre-Conferences: Patients 2.0 brings together more than 150 patient activists. Doctors 2.0 has several leading physicians on stage and in the audience, and more than 15 demos and active panel discussions. Employers 2.0 has leading employers again on stage and in the audience (Wanna meet Facebook’s head of benefits? -scan the badges!) and more demos than you can shake a stick at–as long as some cool case studies from Pfizer on wellness and Cisco on worksite clinics.Continue reading…

Patients 2.0 – The Growing Demographic of Networked Patients

In a ballroom at the Hilton Union Square in San Francisco last week, several hundred people shared ideas, debated, and painted a multi-faceted picture of the NewPatient: the networked patient.

The meeting was convened, in “unconference” style, in conjunction between the Health 2.0 Conference and Gilles Frydman, founding father of ACOR, the Association of Cancer Online Resources. Gilles knows a lot about the NewPatient: he’s organized people focused on cancer for over 15 years through his organization, which has helped tens of thousands of health citizens connect to clinical trials, researchers, information, and each other – all seeking to cure virtually every form of known cancer, and identifying forms unknown.

As Jeremy Shane of Health Central kicked off the meeting, he set the theme: this session was, “Not Meet the Parents, but Meet the Patients.” As Health Central sees 14 million visitors to its sites on a monthly basis, Jeremy has some knowledge about the NewPatient, too.

What makes an engaged patient, he has learned, isn’t based on a demographic such as age or gender or socioeconomic status, per se; what makes an engaged patient is a desire to understand her situation and a driving curiosity – in sum, a “need for cognition and understanding,” Jeremy contends.

Jeremy notes that the average search on health has grown from 4 words just a couple of years ago to 6.5 words today — a longer tail – because people are describing their unique situation and they want an answer to their own needs.

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