On February 18th we gathered a panel from across three continents to discuss e-patient and physician relations in our latest Doctors 2.0 & You Google hangout.

Moderated by ePatient and health blogger, Marie Ennis-O’Connor, the panel which included Denise Silber (founder of Doctors 2.0), Jamie Tripp Utitus (MS survivor and health blogger) and Renza Sciblia (diabetes consumer and health blogger) discussed the ways in which new technologies are contributing to the patient/physician relationship. The following is a summary of the discussion, which can be viewed in its entirety via the video below.

Relationships in medicine are as important now as they were in the past. The difference is that today’s technology allows physicians and patients to communicate on a different level.  The panel listed some of the new technologies that are changing the dynamic between the patient and the physician, and how the balance of power has shifted. This led to a discussion on how some doctors view the empowered, digitally savvy patient as a challenge to their authority and expertise. Jamie suggests leading physicians gently towards a discussion on health technology, while Renza sees this as an opportunity to broaden the relationship between doctor and patient, fostering more openness and honesty in the relationship.  She suggests that patients interview their doctors in advance to find the level of collaboration they are happy with.

Speaking to the numbers of doctors who embrace new technologies, Denise suggests that this is a multi-factorial problem, encompassing people skills and financial remuneration. Michael Weiss, listening online to the discussion, asked the panel for their thoughts on the future of medicine being the convergence of ehealth, mobile health and social media. The panel are all in agreement that this is the future of medicine, and spent some time on the important role that social media has to play in supporting and educating patients. Blogs and Twitter chats are great vehicles for healthcare professionals to learn about the lived experience of a condition.

The discussion ended with each panellist offering one piece of advice to physicians to help them prepare for a future where patients are empowered by new technologies. Renza’s advice is to just step in there and offers the reassurance that the majority of patient sites online are very well moderated and provide accurate information.  This is not about replacing the doctor/patient relationship, but augmenting it.  Jamie refers to Dr. Charles Safran’s quote that patients are the most underutilized resource in healthcare, followed by Denise quoting that the patient is the first member of the medical team.  The discussion ends with Jamie’s call to patients to join the healthcare conversations online – to find answers and support and Renza emphasizing the peer-to-peer support and power of community that can be accessed online.

Who would have thought that this tiny aperture -- a mere 140 characters -- could connect me with so many smart, feisty people?

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Since 1992, I have advocated for all of us to have the information, support and guidance we need to act to improve our health and get the most from our health care. I believe — and there is evidence to back me up — that we do better when we participate in our care to the extent we are able with as much knowledge about what might work that we can absorb.

As someone who has been/is being treated for five different types of cancer, I am familiar with many of the challenges we face in getting the most out of our health care. We not only need to know about our specific diseases and treatments and what we can do about them, but we also need to know something about how our care is organized and about changes in general health knowledge and medical practice that affect how we make use of the resources and services available to us. Then we have to act on our own behalf or on behalf of our child, partner, spouse or parent. The organization I direct, the Center for Advancing Health, has mapped out the tasks that are now ours — the many actions we must take to find good health care and benefit from it.

Every weekday, I tweet a carefully chosen stream of new evidence, analysis and commentary that covers all the health and health care angles that we — sick or well — might need to know about. I tweet material from major news outlets, peer-reviewed literature, blogs and magazines in the belief that thoughtful consideration of emerging information and understandings about health and health care will serve us well.

Here’s why I tweet what I tweet:

• It has never been more important for us to be well-informed about so many aspects of health care — not just our complaint of the moment. Otherwise, when we are passive recipients of care, we risk being on the receiving end of medical errors, spending money on unnecessary tests, receiving suboptimal care or simply not knowing how we can best help ourselves. I aim to tweet what we need to know.
• Evidence has never been more important. Especially considering media reports that much of the care we receive may not be consistent with evidence of what is currently deemed most effective. Combined with the rapid pace of new findings, understanding the facts relevant to your situation can be intimidating to patients and health professionals alike. Plus, it’s time-consuming for us to sort out solid information from broad assertions and slick advertisements, so I aim to tweet evidence worth noting, with the understanding that next week’s evidence may reverse what we know today.
• Finding high-quality analysis and commentary that is relevant to the decisions we must make about our health and care every day is a bear. I know. I wouldn’t be traipsing through 40+ different sites every day in search of the best pieces if they were located in one place. I aim to tweet links to useful, diverse analyses and findings.
• Understanding health and health care is not just a matter of digesting new facts. It also includes considering implications of those facts and different perspectives on policies so that the facts have context and meaning. I aim to include articles that tweak easy assumptions, shed light in dark corners and sometimes make me smile.
• Lastly, it’s funner than heck to do this. I have an insatiable taste for gossip, a fascination with trying to figure out what we really need to know to care for ourselves, a long memory for ineffective-but-nevertheless-repeated health care foibles and an impulse toward snarkiness that occasionally breaks through. Spending a couple of hours each day trawling online for new findings, blogs, articles and essays that I think you might find interesting is a great way to start the day. ...

By Donna Roach

For providers who want to involve patients in their own care and form closer ties with consumers, now might be the best time in years to implement this strategy.

The Pew Research Center's Internet & American Life Project recently reported that 69% of U.S. adults track a health indicator for themselves or a loved one. The California HealthCare Foundation reported that, “Patients pay more attention and become more engaged in their health and medical care when they have easy access to their health information online.”
Although there is clear data supporting the need for providers to offer effective and user-engaging patient portals, many systems launched to date have fallen short of meeting patients' needs. Providers have made a commitment to discovering why this is the case, driven by pressures to meet the expectations of patients and communities.

A patient portal is a secure online website that offers consumers convenient 24-hour access to personal health information and medical records through an Internet connection. A portal should be a starting point for other sites, provide the capability to usher in new applications and technology and streamline processes. A patient portal should also engage the users and encourage them to regularly access their information.

So why aren't patient portals more common?

Other consumer-friendly portals provide ready examples of how to facilitate interactions and engage users. For example, Pinterest is the fastest-growing social network, accessed by 15% of American Internet users. Pinterest is a pinboard-style photo-sharing website that enables users to create and manage their own image collections or events, interests and hobbies. Each “pin” posted to the site serves as a portal into a personal web collection or other themed sites.

On the other hand, Facebook and Twitter provide more up-to-date content and real news information than most standard news sites. And ESPN.com provides access to a variety of sports portals for up-to-date content. These sites have one thing in common—users interact with the sites many times a day, returning multiple times to access new content.
This type of engagement should be the ultimate goal for patient portals.

To achieve that goal, patient portals must include secure messaging linking patients and the provider, prescription refills, lab results and online bill payment. In my organization, we offer a patient portal that is directly integrated with the enterprise electronic health record. Additional features include appointment requests and verification; demographic information updates; laboratory results and patient education materials; clinical record summaries; continuity of care document downloads; discharge information and online bill payment.

We introduced the portal in March 2013, and it now has 13,000 active users. That growth was driven by efforts to increase awareness of the portal's benefits among our patients and community, and their realization that the portal's benefits go far beyond general convenience. The portal is helping to alleviate follow-up phone calls to physician offices. In the past year, we also introduced the portal to inpatients, offering them access to discharge information and follow-up patient care instructions. As the portal evolves, we're planning improvements and upgrades.

The portal also has served as a successful measurement for meaningful use Stage 1. Stage 2 also sets objectives for patient engagement for which portals could prove effective. Overall, the most significant benefit of the portal has been the opportunity to offer an accessible, effective engagement tool to patients and the community.

Our patient portal is much more than just an online tool; it supports a strategy focused on enhancing patient engagement within our community and with our providers. As the industry becomes more focused on ambulatory care, the portal is another way to strengthen our ambulatory presence and reach more individuals beyond hospital walls. The patient portal can also be an efficient and effective method of communicating with patients outside of the office. The most pronounced portal benefit, however, is the improvement in healthcare quality it encourages, stemming from patients' active engagement in their health and healthcare.

The health records of everyone in the NHS will be pooled in a vast database which can be accessed by researchers and pharmaceutical companies. But campaigners warn it could breach privacy.But campaigners warn it could breach privacy.

By Sarah Knapton, Science Correspondent

he medical notes of every NHS patient are to be pooled in a vast database to improve research.

In the coming days every household in Britain will receive a letter advising them that, from April, their medical histories will be shared with researchers and pharmaceutical companies unless they opt out.

Today leading charities including Cancer Research UK, Diabetes UK and the British Heart Foundation launch a campaign to highlight the importance of allowing the notes to be accessed for the advancement of medical science.

They say the database will help them understand the causes of disease, spot side-effects to new drugs and detect outbreaks of infectious diseases.

Doctors have promised that patients will remain anonymous. But data protection campaigners have warned that individuals risk being identified and that the notes may be inaccurate.

Health professionals have admitted the ‘care.data’ database could be vulnerable to targets from hackers and criminal networks, but say it is necessary to improve the health service.....

[ Read the full blog! Specifically quotes from experts for and against this registration }

Das Patientenrechtegesetz: Rechtliche Hinweise und Empfehlungen für Ärzte und Psychotherapeuten

Das Patientenrechtegesetz ist seit Februar 2013 in Kraft. Die Einführung der neuen Paragrafen 630a bis 630h des Bürgerlichen Gesetzbuches (BGB) war bundesweit Thema in den Medien. Trotzdem wirft das Gesetz immer wieder Fragen auf: Welche zusätzlichen Pflichten haben niedergelassene Ärzte und Psychotherapeuten jetzt beim Dokumentieren der Behandlung? Dürfen Pati- enten auch außerhalb der Sprechzeiten Einsicht in ihre Akte verlangen? Wie viel kann für eine Kopie in Rechnung gestellt werden? Wer darf die Akte ei- nes verstorbenen Patienten einsehen? – Mit diesen und ähnlichen Anfragen können auch Sie jetzt verstärkt konfrontiert sein.

The Law on Patients' rioghts in Germany: Legal guidelines and advices for physicians and fysiotherapists. 

The law on patients' rigths is set in force since February 2013. The introduction of new paragraphs 630a to 630h of the citizens rights book has been an issue in the several states of Germany.  Nevertheless, the law raises ever new questions: what new obligations are added now to the "niedergelassene" physicians ans physiotherapists regarding documentation of their treatments? Can patients have also right of view/inspection of their records outside of consultation times? How much could one charge for copies of records? Who could see the records of a deceased patient? You could be confronted with such questions as well. ...

Read further, but in German

Health engagement online deepening at a time when consumers are expected to take a greater role in their care

October 10, 2013, New York, NY – Consumers have long used health websites and other online tools to gather information about conditions and treatments. Now they are broadening their health activity online, using Internet resources to support healthcare decision-making and to manage conditions, a new study shows.

Forty-five percent of online U.S. adults with a chronic condition say that the Internet is essential to managing their disease or condition, according to the Cybercitizen Health® U.S. 2013 study from healthcare market research and advisory firm Manhattan Research.

“We’ve hit an inflection point in the way consumers use the internet for health,” said Rory Stanton, Consumer Insights Analyst at Manhattan Research. “They are going beyond seeking-information to using tools and services to manage the day-to-day aspects of care. That’s good news in this post–healthcare reform environment, in which digital engagement of consumers for example via patient portals and telehealth will be a key to success.”

The study also found that online content and services influence how consumers approach health management for themselves and their dependents, with 44 percent of online consumers agreeing that the Internet is essential for their health and medical decision-making.

These and other study findings highlight key opportunities for various health stakeholders, such as pharmaceutical companies, provider networks, and payers, to provide technology-based value added services and empower deeper engagement from end users.

84 percent of US consumers believe they should have full access to their electronic medical records while only a third of physicians (34 percent) share this belief, according to an Accenture survey.