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Connected Health for Patients: Information Technologies for Better Care

Posted: 21 Oct, 2013   Recommendations: 4   Replies: 30

Dear All,

How can patients use health IT to improve the care they receive? Can populations in underserved communities use Health IT as well? What does it take to develop and implement health IT solutions that “consumers” will use and champion and which can lead to improved outcomes? How can doctors and patients work together to create the next generation of tools of improving health care delivery?

These are some of the questions and topics we invite you to discuss in our new Expert Panel, organized with Partners HealthCare Center for Connected Health as a complement to the 2013 Connected Health Symposium. If you were not able to attend this year’s symposium, or attended but wish to discuss these important topics further, now is your opportunity to connect with some of the speakers, and hear from additional experts in the field.

We’re delighted to welcome the following panelists for our discussion:

- John D. Hixson, MD, Assistant Professor of Neurology at the University of California, San Francisco, works on several projects exploring the use of digital and mobile health applications to improve the longitudinal care of patients with chronic disease. John also serves as the Associate Deputy for Clinical Informatics at the San Francisco VA Medical Center, and currently is the principal investigator of a national clinical trial examining the impact of the PatientsLikeMe platform in Veterans with epilepsy. Dr. Hixson is a leader in national VA implementation efforts and software development projects devoted to the use of digital health solutions for the Veterans.

- Kamal Jethwani, MD, MPH, Manager of Research and Innovation at Partners HealthCare Center for Connected Health, will share some insights and reflections from this year’s symposium.

- Pat Mastors, CEO of Pear Health LLC, Author of Design to Survive: 9 Ways an IKEA Approach Can Fix Health Care & Save Lives. A veteran news and medical reporter at several New England television stations, the loss of her father while in medical care in 2006 led Pat to seek solutions that patients and advocates can use themselves to support safety, dignity and participation. She is creator of the Patient Pod, a patient engagement & empowerment tool that brings patient autonomy and communication to the bedside.

- Alicia C. Staley, CEO of Akari Health, a start-up patient engagement consulting agency. With an engineering background, Alicia applies her technical knowledge in creative ways to bring different healthcare communities together to leverage knowledge, solutions, and support in efficient, effective ways. A three-time cancer survivor, she is committed to making a difference in the health care community and contributes to various online support communities.

How to Participate:
This virtual expert panel is free and open to all. Please click on “Join this Expert Panel” button on the right of the panel page.

This panel is part of our US Communities Initiative, which is supported by the Agency for Healthcare Research and Quality (AHRQ), and aims to foster discussions between health care professionals on evidence-based practices, and translating these practices across disparate settings, to improve health care delivery in underserved populations in the US. We will share evidence and key points from relevant AHRQ resources to support this discussion, and encourage you to review these materials and ask questions, share complementary resources, and describe your experiences implementing these best practices.

Finally, in an effort to understand the impact of our Expert Panels and how we can improve, we invite you to take a short 4-question survey before this panel begins at this link:
Once the panel has concluded, we will invite everyone to answer a similar, short follow-up survey.

We look forward to this discussion, so join the conversation and share your thoughts!

Sincerely, Sophie



Sophie Beauvais Replied at 5:00 PM, 21 Oct 2013

Dear All,
We look forward to this expert panel discussion on health information technology focused on patients. As we get ready for this panel next week, I will share some highlights on this topic as found in publications by the Agency for Healthcare Research and Quality (AHRQ) throughout this week. I invite you to review these materials and share your thoughts on applicability and relevancy to your work.
Many thanks, Sophie

1. Enabling Patient-Centered Care Through Health Information Technology Report
Executive Summary:
Evidence Reports/Technology Assessments, No. 206. Investigators: Joseph Finkelstein, MD, PhD, Amy Knight, MD, Spyridon Marinopoulos, MD, MBA, M Christopher Gibbons, MD, MPH, Zackary Berger, MD, PhD, Hanan Aboumatar, MD, Renee F Wilson, MS, Brandyn D Lau, MPH, Ritu Sharma, BS, and Eric B Bass, MD, MPH.The Johns Hopkins University Evidence-based Practice Center. Rockville (MD): Agency for Healthcare Research and Quality (US); June 2012. Report No.: 12-E005-EF

The main objective of this report is to review the evidence on the impact of health information technology (IT) that supports patient-centered care (PCC) on: health care processes; clinical outcomes; intermediate outcomes (patient or provider satisfaction, health knowledge and behavior, and cost); responsiveness to needs and preferences of patients; shared decision making and patient–clinician communication; and access to information. Additional objectives were to identify barriers and facilitators for using health IT to deliver PCC, and to identify gaps in evidence and information needed by patients, providers, payers, and policymakers.


The barriers identified in AHRQ’s review includes: poor interface usability and problems with access to the health IT application due to older age, low income, education, cognitive impairments, and other factors. The studies also mentioned low computer literacy in patients and clinicians, and insufficient basic formal training in use of the health IT application as barriers to effective use. Studies also identified physicians’ concerns about potential new work, problems with workflow, and problems related to new system implementation, including the lack of adequate funding. Both patients and physicians worried about confidentiality of patient information. Other studies cited depersonalization, incompatibility with current health care systems, concerns over privacy, the need for standardization of health IT applications, and problems with reimbursement as potential barriers.

Important deficits were found regarding the information needed to support estimates of the cost, benefit, impact, sustainability, and net value of using health IT to enable PCC. Most of the existing evidence focuses on process outcomes, clinical outcomes, and intermediate outcomes, with a paucity of research on the effects of health IT on responsiveness to the needs, preferences, and values of individual patients or on shared decision making with patients, their families, and providers. Also, very few studies addressed the cost or sustainability of using health IT to promote PCC.


Facilitators for the utilization of health IT included ease of use, perceived usefulness, efficiency of use, availability of support, comfort in use, and site location. Particularly several tudies suggested that a high rate of satisfaction with an application’s ease of use, perceived usefulness, and efficiency of use can drive utilization of health IT in patients and physicians. Other studies mentioned availability of support, comfort in use, and site location as facilitators of health IT implementation and use.

Other questions include:

Are health IT applications that address one or more components of PCC effective in improving health care process outcomes?

> Each type of health IT application that AHRQ studied, from decision support to telemedicine to tools for patient self-management, has resulted in positive, and often significant, improvements in process outcomes. The evidence is insufficient to determine whether any particular type is more effective than the others, but telehealth applications and care management tools were the health IT types most frequently cited as having a positive impact on at least one health care process outcome.

Are health IT applications that address one or more components of PCC effective in improving clinical outcomes for patients?

> The components of PCC addressed most frequently were related to coordination and integration of care, and an enhanced clinician–patient relationship. Overall, AHRQ found that various health IT applications implemented to enhance PCC generally improved clinical outcomes for patients with diabetes, heart disease, cancer, and other health conditions, and several of these interventions showed a statistically significant favorable impact.

Are health IT applications that address one or more components of PCC effective in improving intermediate outcomes for patients?

> The studies most frequently cited telehealth applications as having an effect on intermediate outcomes, but less than half of the telehealth applications had a statistically significant positive effect on at least one intermediate outcome. In contrast, for three of the health IT types that had fewer studies of intermediate outcomes (care management tools, personal health records/patient portals, and electronic messaging), the majority of studies reported a statistically significant positive effect on at least one intermediate outcome. This observation makes it difficult to formulate any strong conclusion about how the impact on intermediate outcomes varies by type of health IT application.

Telemedicine and other interventions that focused on integration of care and information exchange generally had positive effects on patient–provider communications and satisfaction among patients and providers. Tailored health IT interventions aimed at increasing patient engagement during the clinical encounter yielded positive results on patients’ question-asking behaviors and patient and provider satisfaction.

To meet the needs of different types of stakeholders, the AHRQ reviews encourages investigators to engage consumers, their families, clinicians, and developers in the design of studies and the selection of the most important outcomes to assess.

Attached resource:

Sophie Beauvais Replied at 10:02 AM, 28 Oct 2013

Hi Everyone,

Welcome to this week’s virtual expert panel discussion “Connected Health for Patients: Information Technologies for Better Care.” Thank you to you and to our panelists joining us this week: John D. Hixson, MD, Assistant Professor of Neurology at the University of California, San Francisco, Associate Deputy for Clinical Informatics at the San Francisco VA Medical Center, and principal investigator of a national clinical trial examining the impact of the PatientsLikeMe platform in Veterans with epilepsy; Kamal Jethwani, MD, MPH, Manager of Research and Innovation at Partners HealthCare Center for Connected Health; Pat Mastors, CEO of Pear Health LLC, Author of “Design to Survive: 9 Ways an IKEA Approach Can Fix Health Care & Save Lives”; Alicia C. Staley, CEO of Akari Health, a start-up patient engagement consulting agency, and a leader in various healthcare and online support communities. We look forward to a great discussion!

Right away, I’d like to invite our panelists and everyone to share their work and reflect on the following questions: How can patients use health IT to improve the care they receive? Can populations in underserved communities use Health IT as well? What does it take to develop and implement health IT solutions that “consumers” will use and champion and which can lead to improved outcomes? How can doctors and patients work together to create the next generation of tools of improving health care delivery?

We’re also delighted to organize this panel as a follow-up to the Connected Health symposium. Here are some tidbits and reflections from the conference. Thoughts?

Many thanks, Sophie


"Innovations is not features. People often look too much at software and not enough at service." I wonder what we “consumers” think about that. Also are you finding your way among the many health applications that are out there? And how are you using the data that comes out of it, are you discussing it with your doctor? Do you think we need a marketplace a la amazon to find all “vetted” personal health applications and e-services in one place?

Many seemed to think that patient engagement was the last mile for EHRs. Others said that the real issue was the need for legislation around these communications... considering that the FDA just said it would not regulate on health apps that did not address diagnosis... how likely is this to happen and is this really a solution?

Integration of communications systems for care is needed but the patient needs to be at the center of it. A speaker cited Australia as having only one EHR. Organizing care around a “care team” centered on the patient seemed to be a good option. Some noted that it is critical that clinicians and patients establish a mutually respectful relationship.

On the question of patient engagement, everyone thought it was the one thing to reach for and overall many patients want to be more involved. Joseph Cafazzo of the Center for Global eHealth Innovation at the University of Toronto shared how technology for self-dialysis ended up working better than what most clinicians thought – and that because they did not really understand what the people wanted. He also presented “Bant” an mHealth app for the Self-management of Adolescent Type 1 Diabetes that has had great uptake and follows a “gamification” strategy and design; “Health e-Concierge” a sort of personal health coach – a topic that was pretty hot during the conference as well; and “Breathe” a mobile asthma self-management application for consumers.

Attached resource:

John Hixson Panelist Replied at 12:51 PM, 28 Oct 2013

Thanks Sophie and everyone for this virtual discussion. I’m really looking forward to sharing ideas and learning from everyone else! For some background, I’m currently a practicing neurologist at UCSF and the San Francisco VA Medical Center. I was primarily a full-time clinician specializing in epilepsy care for about 5 years, but then like many on this forum, I began to appreciate the potential for digital health solutions and patient engagement. I realized that every time I visited with patients, I was only getting a small glimpse into what was really occurring with their health. Further, I realized that my conversation with patients every ‘4-6 months’ was pretty inadequate to empower them to optimally manage their own health.

So, with that background, I’ll tell you a little about the project that we are currently running in the VHA. A little over a year ago, we ran a small pilot project with PatientsLikeMe to determine if Veterans with a diagnosis of epilepsy would be interested in an online patient community with self-management tools. We tested the platform in about 30 Veterans, monitoring about half of them in a clinic to see what barriers they encountered and what features they thought were lacking. The observations and data from that pilot made us optimistic that Veterans were very interested in using such a tool. We also learned a great deal about the outcomes measures that were 1. most relevant to this type of a digital health intervention, and 2. most meaningful to the patients. So after the pilot was finished, we wrote a protocol for a full study. We just finished recruiting our 250th and final participant last week. 

Although I can’t release any results yet, I can comment on two study elements that are relevant to the proposed discussion. First, I would observe that this study population is not a typical self-directed, ‘tracker’ cohort. These Veteran participants were recruited directly from the VHA clinic population and through various social media outlets directed at Veterans. The demographic data almost directly mirror the existing VHA patient population in terms of age and gender. In fact, we had originally hypothesized that we might attract a patient group skewed to the younger Veterans, but this has not actually borne out. Observations from both the pilot and the full studies suggest that there is a great deal of interest from these patients, even though they had not sought out an online community and toolset on their own.

The second point that I wish to highlight involves the outcomes measures for the study. We chose two well-validated clinical measures of condition self-management and self-knowledge (I’d be happy to provide more details). Basically, these are assessments of how comfortable a person is with making intelligent decisions about the management of their own health condition. It remains to be seen if we made the right choice with these measures (!!), but we felt that these were optimal since they are validated in the scientific community and they most accurately reflect what the PatientsLikeMe experience can offer to patients. From my perspective, the biggest question now is how these measures will be ‘accepted’ and translated in the clinical community. Since many digital health interventions don’t immediately ‘fit’ into the traditional medical economic model, how do we value these emerging measures of impact on health? And if we can attach a quantifiable value, how do we translate that into clinical practice?

I’m very excited to see where this discussion leads, and very much look forward to hearing everyone’s ideas!!!

Pat Mastors Panelist Replied at 3:58 PM, 28 Oct 2013

Sphie, thank you for the opportunity, and John, thank you for your comments about the very interesting VA patient engagement project.

It is a challenge to get insights and meaningful, proven ideas adopted into clinical practice, especially during a time when digital solutions are so popular. They are easily digested and it seems everyone is looking for "an app for that". Are you affiliated with or is your hospital a member of any of the Hospital Engagement Networks (HENs)? The Partnership for Patients is looking for engagement tools, which they disseminate to the network through webinars. It has just been funded through 2014. Additionally, the Institute for Healthcare Improvement in Cambridge has a mandate to seek, vet & share solutions that fulfill the "Triple Aim" of health care. Have you gone down either of those avenues?

And, how wonderful you are getting buy-in for your program from older vets! I love it!

I'll have more thoughts shortly on the general questions posed here, but thoyght I'd start with that.

Marie Connelly Replied at 4:23 PM, 28 Oct 2013

Very much looking forward to hearing from everyone on these important topics - thank you, John for sharing some of the details about your study with Patients Like Me!

It seems many innovative approaches are coming from the VA (any discussion about engaging patients would be remiss if it didn't mention Blue Button, linked below). I suspect some of us shared John's initial hypothesis that veterans (on the whole) would be less interested in the self tracking methods of engagement that seem be coming to the fore these days - it's great to hear that hasn't really been the case.

I think this ties into one of the questions Sophie posed earlier, about how technology solutions are being developed for, and adopted by, underserved patient populations. Too often, we think of "innovation" as the newest, shiniest piece of technology, and in some ways, I feel like a lot of what we're seeing right now is coming from the consumer/wellness market (FitBits, Jawbone UPs, etc.) - arguably, technology developed for "the worried well".

I'd be very eager to hear from more of our colleagues here about technologies and innovative approaches being developed for underserved populations - whether that's Americans living in remote or rural parts of the country, elderly patients, low-English proficiency patients, or others.

Looking forward to learning from our exceptional panelists and community members this week - thank you all for sharing your thoughts and insights with us!

Attached resource:

Alicia Staley Panelist Replied at 4:43 PM, 28 Oct 2013

Hi everyone!
Thank you for including me in this conversation. It's an honor to contribute to this week's panel. A little bit more about me:

I'm a 20+ year, 3x cancer survivor. I was first diagnosed with Hodgkin's Disease when I was a sophomore in college at Syracuse University. I went through surgery, radiation, and chemotherapy to knock out the Hodgkin's. Way back in 1991, the idea of virtual communities were non-existent. I like to say I was diagnosed in the technical "dark ages". I wanted to research my disease and learn more about it. I spent long hours at the cancer center library with my mom, scouring through research reports and briefs about the different treatment options and possible outcomes for Hodgkin's. I completed treatment in 1994. In 1999, after hearing that a fellow hodgkin's survivor had passed away from heart disease, I became very interested in learning about long term side effects of my initial treatment. I stumbled onto and joined the long term survivors listserv. I consider this one of the best (and original) representations of how "health IT" can help patients connect with other patients.

In 2004 I was diagnosed with breast cancer. What was the first thing I did when I got home from my oncologist's with the news of this new diagnosis? I went straight to and posted a note to the listserv and then went to and typed in "breast cancer after hodgkin's." It was a whole new world - and information overload set in. I was able to shift through massive amounts of information and quickly learned how to determine a trusted online resource from a bad one. In 2007 I was diagnosed with breast cancer a second time. I learned a great deal about online information sources and how to build strong support networks with patients from around the world. I've been very fortunate to battle through cancer three times and come out on top. I'm healthier today than ever before, and I know it's because I've been a truly engaged patient with engaged caregivers (thanks MOM!) from the very first diagnosis in 1991.

The role of health IT in a patient's journey is absolutely critical. I feel like I have a very unique perspective on this aubject because I've been in information systems for my whole career. I've worked on large scale IT implementations and I know what it takes to roll out a new system to thousands of users and the coordinated effort that's required. I wear both the patient and IT analyst hats. There's two ways to look at the health IT question - 1) from the IT infrastructure perspective that will support the physician/provider/patient relationships and 2) from the tech tools perspective that a patient uses to support his/her own health. In a perfect world - there would be a seemless integration between these two perspectives, but right now, that isn't the case.

Let's look at the Health IT infrastructure: As a patient, I expect this to work. I expect to see computers in my doctors offices and I expect they can "share" information with other doctors in other offices or practices. That works great if all your care is within one physician network - but as soon as another specialist or provider is involved on the care team, that begins to break down. I think of all the times I have hand carried my medical records, scans, X-rays, lab work, and other papers between hospitals right here in Boston. The frustration at the inability to effectively share information has been constant theme throughout the past 20+ years for me as a cancer survivor. There’s unnecessary anxiety and stress that goes along with the responsibility for personally carrying your own medical records to a doctor’s appointment. During a snow storm in Boston in 2007, I had the misfortune of slipping on some ice on the way to an appointment. My body slid one way and my x-rays films went flying in another, landing in a snow bank. The rest of the morning was wasted away with worry; did the snow ruin my films? Will I have to retake all those x-rays?

Now, from the tech tools perspective. A Patient can literally find apps for almost anything. Exercise trackers, heart monitors, oxygen saturation apps. But, does this app overload create even more fractures in the healthcare world? What about populations that aren't wired 24/7? Does the average patient really understand Health IT and the possibles for more centered/collaborative care? That's the one issue that really concerns me when talking about health IT advances. Are we building systems that will leave people behind?


John Hixson Panelist Replied at 6:26 PM, 28 Oct 2013

Thanks all….great dialogue and ideas. Pat, we have not worked through the Hospital Engagement Networks (although that is a great idea!). We’ve utilized an ‘in-network’ consortium of epilepsy providers within the VHA (the Epilepsy Centers of Excellence); this is essentially a pre-existing network of 17 centers…but going forward with this concept, I absolutely feel that Hospital Engagement Networks would be a preferred mechanism for disseminating useful information and lessons from research like this.

In terms of patient interest, I do hope that we are able to bring some useful and objective data to the discussion on patient engagement. In some respects, it’s a matter of whether you take a ‘glass half-full or half-empty’ view. For instance, during our initial recruitment efforts for the full study, we conducted a phone outreach effort to the Veteran cohort (after providing an opt-out mailer); the majority of those reached were either not interested or didn’t have computer access. However, over a quarter of the Veterans were interested. Taken across the entire Veteran patient population (again, NOT typical ‘self-trackers’), this would actually be a highly significant number of people…

The other observation I’ll make is that this might be more than just ‘tracking’; as you know, there is a forum and education component to this particular platform. I can’t tell yet which elements of the experience might be most utilized, but it’s certainly possible that the participants are more drawn to the community aspect, rather than the tracking tools.

Aaron Beals Replied at 2:33 PM, 29 Oct 2013

Thank you, panelists, for taking the time this week to share your experience with us.

John, were you able to modify the user interface based on the direct observations from the pilot, or did you share the results with PatientsLikeMe so they could make changes? Given that the cohort you ended up with skewed a little older than you anticipated, have you found the PLM user interface easy for them to pick up without training?

Alicia, you raise a great point about patient expectations regarding information portability and connected systems -- patients *do* expect it to just work. And connecting that to Pat's point about patients looking for (and being inundated by) apps and the user-centric functionality they provide: what is the best path forward when a solution has been rolled out that hasn't been built for patient-centered care? Implementations of larger systems are so time- and resource-intensive that telling a hospital they need to cut their losses and switch systems is a non-starter.

John Hixson Panelist Replied at 4:58 PM, 29 Oct 2013

Thanks your first question, yes, we absolutely made some changes to the user interface and experience based on the pilot. This study has been a partnership with PLM, so they were involved throughout the entire experience. We learned a lot from observing user in our clinic during the pilot. For instance, the entire study registration and informed consent process was completed online, so we had to streamline that sequence of events, while ensuring that participants were fully informed. Additionally, as a research study, we were very committed to identifying the best outcomes measures; in the pilot, we tested 10 different surveys, which took an excessive amount of time. For the actual full study, we dropped that to just two short tools; the downside is that we sacrificed some research data but the user experience was much better. And that is the most important element.

In terms of the older cohort, it is still too early to tell how they found the user interface. We haven't digested all of the data yet, so the jury's still out on that. I will say that I find it comforting that it is an older population, since it accurately reflects the Veteran population and demonstrates a willingness and interest to try digital tools. I can only view that as a positive.

Rebecca Weintraub, MD Replied at 8:02 AM, 30 Oct 2013

Great discussion!

A colleague in France, shared all her patients have their data on a smart card, piloted in 1978, and rolled out in 1997! Hoping some of our members in France can comment.

Today, as an internist in the US, I see patients researching their symptoms and treatments with their handhelds on the wards. It would be ideal to learn how, as a care team, patients and providers can incorporate all of the data collected, in our environments, to alert and guide care delivery.

How can we detect when a patient is unable to adhere to their medical regimen? Or a change in behavior has affected their nutrition, sleep or cognition?

What role could start ups like play?

The app collects data about motion and then looks for deviations. What early warning signs could assist us in caring for vulnerable populations from a far?

How can we signal to patients that their environment has changed?
Any thought on the use of Propeller Health's GPS tracker that monitors inhalers to detect when environmental conditions, could trigger asthma?

Many thanks for your thoughts! Rebecca

chris macrae Replied at 8:17 AM, 30 Oct 2013

Here are some follow up links to my post 7 asking whether Robert Kenned Foundation Health evillages is part of the collaboration we are searching - most come from twitter analyzing my interest in

Tomorrows conference at Mountain View recommended by Matthew Holt of Health Care Blog and Health 2.0

Neil Versel journalist at As a board member of Health evillages he occasionally posts on its progress eg

Open Mhealth which is also followed by Tedmed and mhealthsummit - and which recommends conference ny nov 14.15 and
the social business of health is one of 7 youth practice movements friends of Youth Capitalism and Open Society are trying to massively connect around a new 501 Foundation inspired by Muhammad Yunus and launching 22 Nov Atlanta with Opinion Leader support of eg Ted Turner and Jimmy Carter - would welcome ideas on who to collaboratively linkin first ...

Alicia Staley Panelist Replied at 10:48 AM, 30 Oct 2013

Aaron - Great question. "what is the best path forward when a solution has been rolled out that hasn't been built for patient-centered care?"

Here's the question posed with a slight variation - what do you do with a system that was designed with the thought it *does* address patient-centered care, but falls way short of the mark? That's a problem! Patients need to be involved from the very beginning of the process. When that doesn't occur, the patient perspective will never be properly addressed.

Patient-centered care will only occur when you build an environment that incorporates the best technical tools coupled with a mindset that's firmly patient-centered. The best technical tools (EHRs, EMRs, etc) will never be successful without this shift in thinking. How do we truly represent a patient-centered perspective within an IT infrastructure? By building a system that allows for a total 360 degree view of the patient - every interaction, or touchpoint, the patient has with the healthcare team needs to be represented in an actionable way. What does this mean for me as the patient? When I see my oncologist, she knows the minute I walk through the door, that my PCP ordered my blood work 3 weeks before today's appointment. She knows I've seen my cardiologist. She knows my last visit to the hospital was for my flu shot the previous week. She has a clear picture of what my status is as a cancer survivor at that very moment.

I've become very involved with the Patient & Family Advisory Council at the hospital that's looked after me for the past 19 years on my cancer survivorship journey. I recognize that medicine is a business and I understand that there's a delicate balance between costs, quality, safety, and delivering a truly exceptional patient experience. However, I'm finding that the more involved the PFAC becomes at the hospital, the more the mindset shifts to patient centered thinking. That's a good thing.

Sophie Beauvais Replied at 11:45 AM, 30 Oct 2013

All great points Alicia! Any good technology solution for a central EHR for
me - the patient - needs to revolve around the common understanding and
agreement by all my health care providers - from my primary care physician
to any and all specialists I need to see on a regular or ad hoc basis -
that they need to communicate with each other's team and transfer/share
information. Right now, my experience is that my PCP is asking me to get
copies of lab results or anything done outside of her office to her. This
means that I'm the one in charge of asking the admin team at a specialist
office to fax over to my pcp office and then make sure it's included in my
record... otherwise the 2 records are not in sync (and still they probably
are not because they're different systems). I do not call that
"patient-centered." Patient-centered for me would be the admin office at
the specialist asking me if they should fax results/info to my PCP (note, I
said "fax" not transmit electronically because I have yet to see that...).
And this is my small experience with a big private employer-sponsored
insurance in the Boston area, one of the leading health hubs in the US, so
would be curious to hear from others in different states/countries.

Now, as regards to technology EHRs, as a non-tek, I see more profits being
made in the creation and push for multiple EHRs and personal health
management systems than for a push for a unified, standardized model.
Having multiple platforms may bring in more jobs in the short term, and
maybe more "iteration/advancements" of the technology... But in my opinion
it is very difficult to achieve Interoperability of multiple EHRs without
some regulation in place, either forcing for companies to abide by one
language/code or standard whereby systems can at the least
communicate/receive input from other systems, or forcing the use of one
standard system...

This leads me to my next point on France. I think the card that Rebecca
mentions is the "carte vitale"
Anyone 16 or older gets a card as part of the public health insurance
scheme. I've been in the US for 10 years but from what I remember when in
France the card is personal, works with a secured chip and is mostly used
for facilitating the reimbursement process at the doctors' offices and at
pharmacies with both your public and your private insurances information
registered in there. Most people in France are covered by both the basic
public option and a "complementaire" or "mutuelle sante" insurance (see the
example of AXA a world leading insurance company "formules optimales" means
top-of-the-line, private room if you have to be hospitalized, your choice
of any specialists, etc. starting at 44 euros/month per person)

The carte vitale stores basic bio information (DOB, where you live,
personal status, blood type, etc) and records visits and administrative
info (, your
pharmacy record, but not lab results or images or detailed patient notes.
Anytime you see a doctor, you hand him/her your card at the end of the
visit for updating. That's also how the payment is figured out - you pay
your co-pay and the reimbursement request is sent to your insurance
company. My PCP here has an admin office that takes care of that. More than
10 years ago my family doctor in France did not need anyone to do these but
just the card.

It seems that the new version (2007 - "Carte vitale 2" can have more
info like your choice of primary care physician as well as some specialists
names but my guess is that you still have to hang on to physical copies of
exams, labs, etc for detailed info, but I'd love to be proven wrong! I
tried to find articles in English about this but there's almost nothing...
so these 2 for now:

Best, Sophie

Marie Connelly Replied at 4:32 PM, 30 Oct 2013

Alicia, you raise many important points about both the need for patient-centered care, and how hard it is to go back and modify existing systems once they're already in place. It's encouraging to hear that your hospital has made progress on this front over the years - that's definitely an example of the direction we need to be heading in!

I'd be interested to hear from all of our panelists about the role you think patients can play in advocating for greater use of health technologies in the doctors offices and hospitals where they receive care.

I don't want to place the burden of changing entrenched systems on the shoulders of patients, and I know that many patients aren't able to "vote with their feet" and walk away from providers or delivery systems that don't take full advantage of the kinds of technologies we've been discussing, but there are so many patients, caregivers and families out there who want to help make these systems better - how can they do that? What advice do you have for them, and what advice would you offer to providers or systems that want to engage their patients more fully around the health technologies used in delivering care?

John Hixson Panelist Replied at 4:44 PM, 30 Oct 2013

Alicia, Marie, all---

Well, I think this line of dialogue is indeed quite critical, and unfortunately, I'm not sure there are any definitive answers. If medicine were a purely market-driven ecosystem, I suppose the health technologies that executed the best service and design would naturally 'win' with the patient community...but as you've all already mentioned, we don't live in that world (nor do I think that world is possible for healthcare). So indeed, you are left with incorporating the patient voice into the development process; the most forward-thinking institutions are being proactive about including patient focus groups and usability assessments in the initial stages of IT development. But even that can be tricky: how much is enough, and if a 'course correction' is needed, how is this incorporated into the service or project lifecycle? I think the first step is making NO assumptions about what patients want, performing iterative pilot testing with patients, and then taking the time to actually make the changes identified in the pilot testing...

I'll also point out that demonstrating the VALUE to the patient is really critical. Some patients will be avid tech adopters from the beginning, but most will need to see a real-world benefit in their healthcare experience. It might be a more efficient appointment because they were able to complete parts of their health history in advance. It might be a seamless method for ordering medication refills. Or it might be pre-recorded video explanations of 'what the doctor or nurse' said during the visit. These type of intuitive 'value-add' services are much more likely to gain traction than a technology that is patient-facing but is really designed to deliver content to the provider without an obvious use case to the patient......

Aaron Beals Replied at 4:49 PM, 30 Oct 2013

I wanted to share this piece of news, since it's directly relevant to the discussion at hand: there was a major shift in the market today connecting the patient and provider worlds, as WebMD announced they've acquired Avado. (More information in the attached link.)

Obviously, it's hard to predict what impact this will have on patient engagement until they announce new products, but will this end up as a good thing for the patient?

Attached resource:
  • WebMD Acquires Avado (external URL)

    Link leads to:

Joe Welfeld Replied at 4:52 PM, 30 Oct 2013

Patients can advocate the use of online communications between themselves and the physician's office. This communication can be asynchronous and can be structured messages via email or text. I am working with two companies who do that today. It is clear that physicians would be more comfortable with these types of activities in reimbursement systems like ACOs and/or bundled payment and not in the fee-for-service model since it is taking up a portion of their day. Given the unrest in the healthcare insurance market in the US these types of services will be in demand from patients and can act as a differentiator. A few years ago I worked with a health system and a health plan that was offering the service through a vendor and actually made "on-line" communications one of the criteria that could be used to search for physicians.

John Hixson Panelist Replied at 4:56 PM, 30 Oct 2013

Agree, Joe....won't work in the present fee-for-service model, where as we all know, physicians and nurses are effectively disincentivized from spending any time communicating with a patient outside of the office. But new models could be different, not only for online communications, but for many of these digital tools that collect many forms of patient-generated data....

The real question is how the value of these services will be translated into practice...

Patrick Crisp Replied at 5:18 AM, 31 Oct 2013

Hello all
I am a family doctor in Tauranga, New Zealand. Also, I write software for individuals and medical practices.

One of the most promising approaches to the problem of patient data being stored by multiple providers has just started in Australia: a 'personally controlled eHealth record' (PCEHR):

Every individual in Australia will have their own record. Healthcare providers and individuals via their software solutions will be able to access relevant parts of this record for viewing and updating. This means that software vendors can still innovate - the proviso is that their software needs to be able to update the PCEHR (and jump through the many security hoops).

Attached resource:

Sophie Beauvais Replied at 1:05 PM, 31 Oct 2013

Dear All,

Many thanks for the great exchange so far. Today we'd like to ask our panelists and participants to answer this question: What are the facilitators for the use of Health IT by patients?

Here are a few, please complete this list and share some examples and thoughts on how to integrate the user’ experience in Health IT.

- When it facilitates a feedback loop with the patient/improved communication between patient and caregiver with tailored recommendations or advice
- Perceived benefit for using the system
- Integration into daily activities

Sincerely, Sophie

Attached resource:

John Hixson Panelist Replied at 5:14 PM, 31 Oct 2013

Thanks Sophie....well, from my perspective, I believe that one critical element is 'buy-in' and facilitation by the provider team. Perhaps this is what you are already referencing in terms of communication, but from personal observation, it is clear to me that patients will use technology more if their care providers (physicians and nurses) show them how to use it AND incorporate it into longitudinal care in a way that is meaningful to the PATIENT. So it is not enough to ask the patient to provide information that only the providers can use in a manner that is largely opaque to the patient. The patients have to see and understand the value. I think a good example would be feedback on medication scheduling....providing feedback on medication dosing and adherence, and then using this data to answer any patient questions about accuracy of the dosing schedule, side effects, etc......

Sandeep Saluja Replied at 5:28 PM, 31 Oct 2013

One crucial factor is making the software easy to use.

Another issue relates to literacy levels in the population and I have been trying to overcome that by enlsting volunteers within the community to help others.

Joe Welfeld Replied at 6:12 PM, 31 Oct 2013

As we were deploying our patient-physician communication solution, we found that an electronic invitation to the patient from the PHYSICIAN was the most successful approach. Practice staff and even nurses did not get the same response.

Sophie Beauvais Replied at 11:05 AM, 1 Nov 2013

Dear All,

For the last day of our panel discussion, we wanted to focus on discussing monitoring and evaluation. How do you measure the impact of health IT applications on health care provided and on health outcomes? Benefits for the patients – in health and in care received – is a clear factor for uptake and usage. One point that the AHRQ report makes is that there is a lack of longitudinal studies on the impact of these tools. Can you share how effectiveness and usefulness plays into your decision of using – or not using – a tool? How does it factor into the development of Health IT tools?

To add to this, here’s a recap of an AHRQ review on measurements and impact from studies consumer health informatics (CHI) applications:

- In terms of the impact of CHI on intermediate health outcomes, significant positive impact was demonstrated in at least one intermediate health outcome of; all three identified breast cancer studies, 89 percent of 32 diet, exercise, physical activity, not obesity studies, all 7 alcohol abuse studies, 58 percent of 19 smoking cessation studies, 40 percent of 12 obesity studies, all 7 diabetes studies, 88 percent of 8 mental health studies, 25 percent of 4 asthma/COPD studies, and one of two menopause/HRT utilization studies. Thirteen additional single studies were identified and each found evidence of significant impact of a CHI application on one or more intermediate outcomes.

- Eight studies evaluated the effect of CHI on the doctor patient relationship. Five of these studies demonstrated significant positive impact of CHI on at least one aspect of the doctor patient relationship.

- In terms of the impact of CHI on clinical outcomes, significant positive impact was demonstrated in at least one clinical outcome of; one of three breast cancer studies, four of five diet, exercise, or physical activity studies, all seven mental health studies, all three identified diabetes studies. No studies included in this review found any evidence of consumer harm attributable to a CHI application.

- Evidence was insufficient to determine the economic impact of CHI applications.

Many thanks in advance, Sophie

Attached resource:

Julie Rosenberg Replied at 1:38 PM, 1 Nov 2013

This discussion has been incredibly rich and many thanks to all who have shared.

From reading the posts, it seems like there are two areas in which health IT for patients is growing or being explored: moving previously in-person or non technological proven communications/tools/interactions/interventions that are known to be effective into a virtual or technology driven platform to improve spread, uptake, and efficiency (i.e., appt reminders, support groups, patient education or communication with providers) and then a second area that improves or adds to what is already proven and brings new ideas and tools, new potential, to bear (i.e., using technology to monitor patients or look for early warning signs). In thinking about improving the value of health care delivery, that is outcome per spending, do you think one of these areas of development is more effective? If we could make all of our known interventions/delivery mechanism more effective via technology, is that sufficient? What is most likely to have the biggest impact for under-served patients? Is it useful to think about this dichotomy?

Thanks for sharing your thoughts!

John Hixson Panelist Replied at 1:39 PM, 1 Nov 2013

Well, I feel that defining meaningful and measurable outcomes with a value analysis is a key element for studying digital health applications. The consumer-based model (focusing on self-trackers with a multitude of gadgets) is totally fine, but I doubt that model is going revolutionize healthcare without some academic rigor. Currently, the biggest momentum in this space still relies on benchmarks from the fee-for-service system--the best of example of that is the focus on reducing readmissions for CHF and other conditions. That's a nobel outcome measure from a clinical standpoint, but one of the primary reasons that is chosen is because there is a very defined cost associated with it. But it is highly likely that digital health technologies will produce benefits that are NOT currently tied to clear cost, and that makes it very tricky. For instance, if a digital education tool teaches a person more about their health condition, and they are able to better manage it on their own, there won't always be a clear fee-for-service style outcome that makes sense. In those situations, we have to use other non-traditional benchmarks, and then demonstrate that these outcomes measures DO have value (even if not in the fee-for-service sense)....

John Hixson Panelist Replied at 2:02 PM, 1 Nov 2013

Great questions Julie! I suppose I could take the easy route, and say that both types of digital innovation are important and have potential! :) But realistically, I think that the products/services that simply move an existing in-person/non-tech solution onto a digital platform are going to be more successful in the immediate term. People are already accustomed to these services, there is an evidence-base to support them, and in some cases, there are even viable cost strategies. As you likely know, a number of companies are developing tools for diabetes management, cardiac rehabilitation, and many other conditions based directly on proven non-technological paradigms. So I believe that this approach probably faces less of an uphill climb.

Now, in terms of elegance or science fiction vision, the digital monitoring space is probably more compelling. But reaching that vision is a lot trickier. That area really reflects an entirely different way of thinking about medicine in the US...from the participation of the patient, the monitoring responsibilities of the provider, expectations of alerts, privacy/security of data, economic models.....a lot of unknowns with that direction. But certainly exciting to consider!

Sophie Beauvais Replied at 7:50 AM, 4 Nov 2013

Dear All,

Thank you to everyone who participated in this virtual Expert Panel. We will be sharing some lessons learned in a Discussion Brief to be published here in the coming weeks. Starting today until Monday, November 11 9AM EDT, we would like to invite you to take a short follow-up survey at this link:
Results from this survey will help us understand the impact of our Expert Panels and how we can improve.
Best, Sophie

Sophie Beauvais Replied at 7:24 AM, 27 Jan 2014

Dear All,

Thank you again to everyone who participated in our virtual Expert Panel, "Connected Health for Patients: Information Technologies for Better Care", late October/early November 2013. Starting today until Monday, February 3 at 9AM EDT, we invite you to take a final short 5-question follow-up survey at this link:

Results from this survey will help us understand the impact of our Expert Panels 3 months later and how we can improve.

Best, Sophie

Isabelle Celentano Replied at 12:09 PM, 31 Jan 2014

Many thanks once again to all of our colleagues here in the community for taking the time to share such important insights and expertise during this Expert Panel discussion.

We have summarized some of the common themes and key points shared here in a new Discussion Brief, which can be accessed on the GHDonline website by visiting:

We encourage everyone to continue the conversation by sharing examples of innovative digital health technologies or possible "non-traditional benchmarks" that could be used to demonstrate the value of particular health technologies that support patient-centered care.

Also, one final reminder about our 3-month follow-up survey, which closes on Monday morning.

The survey is 5 questions long, but should only take 2 - 3 minutes to complete (really!) - your responses help us understand the impact of these Expert Panels and how we can improve these kinds of discussions in the future.

If you haven't taken the survey already, your feedback would be greatly appreciated:

Many thanks,

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