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March 27, 2013 10:07 am

Hi bill rowe. Thanks for your comment. Do you have any thoughts on how ONC could address the problem you identified concerning the reliability of self-reported data?

March 27, 2013 5:46 pm

Thanks for your comment, royjbussewitz. How could Health IT be used to help consumers understand their decision in layperson language, so that they can make a truly informed decision?

March 27, 2013 7:17 pm

Welcome to Planning Room healthhats and thank you for commenting.

In thinking about multiple contributors to a single health record, do you believe it is important to label what person has input the information? (See § 3. Role of government for more information on “meta-tagging”.)

March 27, 2013 10:12 pm

Welcome to Planning Room, jherbert. Do you agree with bill rowe’s comment that there are issues with reliability and validity of patient-generated health data? If so, are the quality problems caused by patients misusing eHealth tools or are they caused by something else?

March 27, 2013 10:13 pm

Thanks for your comment, peter groen. Are you suggesting that if consumers had access to better technology, the transition to new eHealth systems would be easier? If so, what type of health IT would be most effective?

March 27, 2013 10:14 pm

Welcome to Planning Room, srtupper, and thanks for your comment. Are you proposing that ONC help develop education programs and curriculum to so that patients and providers can communicate with each other better? What do you think the biggest communication problems are?

March 28, 2013 7:07 am

Welcome to Planning Room Sandra and thank you for sharing some of your experiences with your HMO.

It sounds like you have had difficulty viewing your health records on your computer after receiving them from your HMO. Do you think ONC should focus on encouraging the development of tools that make EHRs easier to search? Would a tool like “Blue Button” (discussed in §3) be valuable in solving some of your current problems?

March 28, 2013 9:53 am

Welcome to Planning Room, suggestion, and thank you for your comment. In mentioning an anonymous patient ID, are you suggesting that a patient could use the anonymous patient ID number to access specific health records online?

March 28, 2013 9:57 am

jherbert, do you think that patients will accept that their de-identified data will no longer belong to them? What could ONC do to help patients accept this?

March 28, 2013 11:05 am

Thank you for your comment, cascadia, and welcome to Planning Room. You can tell us more about how you think HealthIT can strengthen the relationships and outcomes between patients and their care teams here.

March 28, 2013 11:32 am

Welcome to Planning Room, madelinemeyer3, and thank you for your comment. Both quality of data and identification of which data is most valuable to providers and patients are important parts of ONC’s plan. You can comment more on those specific issues here.

March 28, 2013 11:39 am

Thanks for your comment, jherbert. Could you give an example of some of the delays you encountered trying to implement functionality in line with the Meaningful Use program?

March 28, 2013 12:45 pm

Thank you for sharing this experience, srtupper. Could you tell us a little more about a time when you witnessed communication challenges related to patient attitudes?

March 28, 2013 12:55 pm

Welcome to Planning Room, ileana balcu. Thank you for your comment. ONC is concerned about the different ways in which the government can act to both improve HealthIT tools and to shift both patient and provider attitudes towards HealthIT. You can read more about these issues and share any other ideas you have, here.

March 28, 2013 6:49 pm

Thank you for your reply, royjbussewitz. What do other commenters think about royjbussewitz’s suggestion that the government should require that all federally funded studies contain a substantive summary written in lay language?

March 28, 2013 9:25 pm

Hi glenfmarshall. ONC is looking for information on how people supply clinically-relevant data about themselves in this section Patient Generated Health Data. Your comment would be helpful in furthering the discussion there.

March 28, 2013 9:26 pm

Thank you for your comment, glenfmarshall. How can the government help define a wider sense of what data is “health information”?

March 28, 2013 10:43 pm

Thank you for your response, sandra. Have other commenters out there had similar experiences to sandra’s, either on the consumer side or the provider side?

March 28, 2013 11:17 pm

Thank you for your comment, glenfmarshall. Do you have any suggestions for how ONC can address those questions?

March 28, 2013 11:30 pm

Thank you for your comment, sandra. Under this section of the plan, ONC is focusing on empowering patients to use Health IT to make healthy choices and better health care decisions. At the moment, ONC is not looking into patient billing practices. However, do you have any ideas about how ONC could encourage HealthIT that does not leave the consumer out in the cold?

March 28, 2013 11:47 pm

Do you have any suggestions for what specific information the government should require that providers include in after visit notes?

March 28, 2013 11:47 pm

Thanks for your comment, glenfmarshall. What do others think about the idea of a hyperlinked “translator” tool?

March 29, 2013 12:58 pm

Hello Ileana balcu and thanks for your comment. It seems that you are saying that certain providers will need to be educated about various ehealth tools before they will feel comfortable using these tools. Do you think that the non-punitive consultancy will help enhance these providers’ ability to give their patients better access to their records?

March 29, 2013 3:11 pm

Thanks for your comment and welcome to Planning Room, What specifically would you like a system like that to accomplish?

March 29, 2013 4:28 pm

Welcome to Planning Room, sue dementad. We wanted to let you know that Planning Room is run by the Cornell eRulemaking Initiative (CeRI). The site is part of an open government project to improve public participation in policymaking by government agencies. The main goal of the site is to provide useful and effective comments to the agency. Our job is to help every person air his or her views in the most effective way – whatever those views are.

March 30, 2013 12:13 pm

Welcome to Planning Room, curious and thank you for your comment. Ensuring that consumers have adequate access to, and control of, their health information is an important goal of the ONC.

March 30, 2013 5:50 pm

Thanks for your comment, tanja meece. How do you think eHealth apps could keep users interested in entering information? For the smartphone apps that you do use all the time, what sort of things keep you interested in using them?

March 31, 2013 1:58 pm

Welcome to Planning Room, paulwinner and thanks for your comment. Ensuring that consumers have adequate access to their health information and are able to share in decisionmaking with their providers are important goals of ONC. You can read more about shared decisionmaking here.

March 31, 2013 2:20 pm

Thank you for your comment gyan patra, and welcome to Planning Room. Can you provide any examples of how patients might be unobtrusively given reminders regarding their medications? Do you know of any existing mobile technologies that provide the alert or scheduling features you suggest?

April 1, 2013 8:08 am

Welcome to Planning Room, rondtroy, and thank you for your comment. It sounds like you may have participated in an ONC training program for IT professionals. Do you have specific suggestions for how ONC could have improved the training program to promote health IT?

April 1, 2013 8:17 am

Welcome to Planning Room, and thank you for your comment, icarewave. You can read more about ONC’s approach in using health IT to enable research here.

April 1, 2013 3:25 pm

Welcome to Planning Room, broadthinking. How could ONC encourage people who work in underserved communities to take the lead in developing training or educational material?

April 1, 2013 3:27 pm

Thank you for your comment, broadthinking. Do you have any suggestions for what ONC can do to promote standardization? Can you elaborate on how Blue Button could enhance the discussion as a possible framework for interoperability and ease of use?

April 2, 2013 10:14 am

Welcome to Planning Room, and thank you for your comment. It sounds like you have had good experiences using eHealth apps. What features of Noom and FitBit make them attractive to use? You mention that you wish you did not have to use so many apps to keep track of similar things. Do you think that individual apps need to be able to do more?

April 2, 2013 10:16 am

Thank you for your comment. Can you explain how you use NFC tags on your medications to avoid reminders? Do you agree with gyan patra’s suggestion that medication management programs should include auto scheduling?

April 2, 2013 10:43 am

Welcome to Planning Room, eddie morgan, and thank you for your comment. You mention that you had difficulty finding information in a quick search for medical records apps. ONC would like to use as a “one-stop shop” for the public to learn about health IT and eHealth tools. Do you have any suggestions for how ONC can improve or what else ONC can do to encourage consumers to use medical apps?

April 2, 2013 1:18 pm

Thank you for your comment, gmathews71. Could you describe what universal standards you think the government should create?

April 2, 2013 1:49 pm

Thank you for your comment claudia brown, and welcome to Planning Room. You can read more about, and comment on, ONC’s efforts in health IT education here. Have you used any other educational resources from ONC?

April 2, 2013 3:31 pm

Welcome warwick, and thank you for your comment. Do you have any thoughts on how the government can encourage patients to provide PGHD and encourage providers to incorporate this data into treatment strategies?

April 2, 2013 3:33 pm

Thank you for your suggestion, eddie morgan. It sounds like you have some background in armed services health care. Do you have any thoughts on how the government could facilitate sharing the data you discuss beyond the armed services context?

April 2, 2013 6:12 pm

Welcome to Planning Room, gmartin. Do you think having a national health ID will encourage providers to offer their patients a way to view, download, and transmit their electronic health information?

April 3, 2013 11:11 am

Thank you for your comment, gmathews71. You raise interesting points about the time and resource constraints providers face. The feedback ONC receives will help them evaluate where they should focus their health IT efforts, which may include working with agencies to develop new regulations and working with legislators and others to develop new legislation.

Given the current fee for service payment model, what do commenters think the government can do to make it easier for providers to incorporate PGHD into their work flow?

April 3, 2013 1:35 pm

You mention correction of the entries. How would that work? Would everyone (the patient, the family, professionals and designated caregivers) all have access to the information in order to correct it, or do you have some other idea in mind?

April 3, 2013 2:15 pm

If ONC sponsored a collaboration to create a shared dictionary, how do you think they should approach that project?

April 3, 2013 9:06 pm

It sounds like you’re saying that ONC should help create a common protocol for information first, before it works to improve the quality of patient inputted information. Do you (or anyone else) have thoughts on whether this is the right order?

April 3, 2013 11:15 pm

Thank you for your comment egombrich, and welcome to Planning Room. You mentioned two Apps your company uses to create strong links between health information and the numerous parties involved in patient care. Are their specific ways the government could incentivise other companies to adopt these Apps and other eHealth tools?

April 3, 2013 11:16 pm

Welcome to Planning Room iamherring, and thank you for your comment. It sounds like you had a positive experience with online health records and would like to see them expanded. You mentioned that you would like the government to encourage standards to include the ability to track health issues throughout the year; could you say more about this? Do you mean that you would like the ability to add to your health records at any time?

April 4, 2013 9:00 am

Thanks for telling us about a tool that works well for you, tanja meece. So that others know which hydration reminder tool you are referencing, could you share its name?

You mention that unobtrusive monitoring is an important feature to you in a health management app. Does the app work as just a reminder alarm with nice bells and whistles or does the app monitor your health unobtrusively in other ways?

April 4, 2013 1:19 pm

Thanks for your response, healthhats. Does anyone else have ideas for what this collaborative project would look like?

April 6, 2013 9:17 pm

Thank you for your comment, tanja meece. Do you have any suggestions for how the government can identify the uses of PGHD that will achieve these benefits?

April 6, 2013 9:23 pm

Hi hrdahlman. Thank you for your comment, and welcome to Planning Room. How can the government best support the uses of Patient Portals that you suggest?

April 6, 2013 9:37 pm

Thank you for your comment, hrdahlman. It sounds like you are suggesting a need to balance information sharing with guidance. How have you been able to accommodate that balance in practice?

Do you have any suggestions for what the government can do to encourage patients to take ownership of their information and health?

April 7, 2013 5:08 pm

Welcome to Planning Room planotim, and thank you for your comment. In trying to make health IT more accessible for patients, you suggest the use of a patient’s name @ a specific URL as their log-in. Could you elaborate on the benefits this approach would have, as compared to a user-selected name? Would the likelihood of duplicate names make your system confusing for providers?

April 8, 2013 12:52 pm

Thank you for sharing your experience, tanja meece. What experiences have others had using mobile apps to manage their daily and long-term health?

April 8, 2013 9:17 pm

Thank you for your comment, hrdahlman. Can you elaborate on how you foresee statewide HIEs supporting your practice and patients in the future?

April 11, 2013 8:50 am

Welcome to Planning Room, health lead-er, and thank you for your comment. What do you think is the best way for ONC to connect the right community groups to the patients in underserved communities who do not know about the resources they are eligible to access?

April 11, 2013 9:04 am

Hi hrdahlman, thank you for your comment. You mention research which shows that patients experience higher quality care when they have access to their health information. Could you share some more detail about those studies or any links to the research? Also, it sounds like you think that setting standards for Patient Portals would improve patient care. Do you have any particular standards in mind?

April 11, 2013 9:21 am

Welcome to Planning Room, christine.sinsky. Thank you for your comment. How can the federal government best encourage development of EHRs with improved usability for practices which have developed a team based model of care?

April 11, 2013 10:21 am

Welcome to Planning Room, Ispikol, and thanks for your comment.

You note that electronic health records could be set up as a communication device to take care of populations outside the office. In your experience, have you seen any services that do this effectively?

April 11, 2013 10:21 am

Thanks for your comment, Ispikol. You note that a large problem is that different systems do not communicate with one another. Can you give examples as to how this issue has impacted your workflow as a physician?

Do you have any suggestions as to how electronic health record companies could be incentivized to make this easier?

April 11, 2013 12:14 pm

Hi lee jarm. Welcome and thanks for commenting. royjbussewitz appears to have identified informed consent as one issue for government to focus on in helping a provider communicate a patient’s treatment choices with other relevant providers. Are there other ways that you think the government could help facilitate this goal?

April 11, 2013 12:46 pm

Thank you for your suggestions, Ispikol. Does anyone have other suggestions for how developers could be incentivized to make products that are compatible with each other?

April 13, 2013 9:15 am

Thank you for your comment, lee jarm. Educating patients through health IT is an important part of ONC’s plan going forward. You can read more about what ONC has already done and also comment on what they should do in the future, here.

April 13, 2013 11:55 am

Thank you for your response, planotim. What do other commenters think of planotim’s suggestion of creating a common identity profile that providers and services could access when authorized?

April 14, 2013 2:12 am

Thank you for your comment, concernedcitizen1952, and welcome to Planning Room. Ensuring that consumers have adequate access to, and control of, their health information is an important goal of the ONC.

April 15, 2013 12:05 pm

Hi lets get a grip and welcome to Planning Room.
ONC’s work on EHRs and health IT is governed by HITECH Act regulations. The Health Information Technology for Economic and Clinical Health Act (HITECH Act or “The Act”) is part of the American Recovery and Reinvestment Act of 2009 (ARRA). For more, see:
It sounds like you don’t think Health IT can assist providers in delivering compassionate care. How, if at all, do you see such systems being valuably utilised by healthcare providers in order to improve their service to patients rather than draining resources and time?

April 15, 2013 7:57 pm

Thank you for your reply, lets get a grip. Do you have any suggestions for what ONC can do to enhance the ability of small primary care practices to deliver quality compassionate care and encourage patients to become more engaged in their health care?

April 16, 2013 8:47 pm

Welcome to Planning Room willr, and thank you for your comment. Can you elaborate on what specific challenges there are relating to interoperability and tracking patients across different care settings?

April 25, 2013 4:55 pm

Welcome to Planning Room susanchull and thanks for your comment. What do others think about this system of ONC challenges that encourage HCOs, ACOs, PCMHs and Payers to work with innovators?

April 25, 2013 5:03 pm

Thanks for your comment susanchull. Several other commenters have noted problems of interoperability with PGHD. Could you describe the work being done by the MOHR Project and eQueri to deal with the interoperability problem in Section 1: Benefits and challenges?

April 25, 2013 5:13 pm

Thanks for your comment susanchull. What can the federal government do to support the development and adoption of person-centric profiles maintained and updated by the consumer?

April 25, 2013 5:21 pm

Thank you for your comment susanchull. Does anybody else have ideas for incentivizing virtual and mobile care outside of the 4 walls of hospitals?

April 27, 2013 11:28 am

Welcome to Planning Room, doctormd1985, and thank you for your comment. In this strategic plan, ONC has not proposed to adopt specific technology standards. ONC wants to help promote eHealth tools that are useful for patients and providers. How can the government promote the development of these technologies, especially for underserved populations, without encountering the problem you’ve identified?

April 27, 2013 11:42 am

Welcome to Planning Room, ajchen, and thank you for your comment. Do you have examples of platforms like this that would guide ONC in developing something similar? How could ONC overcome problems like inaccurate translations?

May 2, 2013 11:02 am

Welcome to Planning Room and thanks for the comment thanga prabhu. From your experience as a physician have you seen the benefits of EMRs in helping patients become more active in their care?

May 2, 2013 10:43 pm

Thank you for your response, thanga prabhu. Have others had similar (or different) experiences with EMRs in helping patients become more active in their care?

May 8, 2013 6:59 pm

Welcome to Planning Room, rich, and thank you for the comment.

It sounds like you’re saying that clinical data needs to be processed to make it helpful to consumers. How should this data be presented to consumers to “empower, educate, and reinforce” healthful choices?

May 9, 2013 6:20 pm

Thank you for your comment and welcome to Planning Room, sean cahill. It looks like you are already familiar with the commenting process. However, commenting on our site is a little different. The issue posts and sections on Planning Room are designed for targeted commenting, which encourages discussion on specific issues. You can visit our about section for more information. It may be helpful to remove the headings from your comments to give yourself some more room while also making them easier for other commenters to read.

March 27, 2013 11:11 am

I think that so long as the data is tagged as patient generated there is no problem. For various purposes you may want to exclude this data and for others you could include it.

March 29, 2013 7:02 pm

In addition to providing consumers the tools they need to accurately record their PGDH, ONC should evaluate the reasons why a patient would not provide accurate information in any case.
For example, a patient who has health insurance through an employer, which includes incentives for participating in “wellness programs”, may not be willing to share all relevant health data. They may simply want to benefit from lower premiums used to incentivize participation. However, it may be that employees believe that not participating in “wellness programs” indicates health issues, so they don’t really see themselves having much of a choice.
Patients may also believe, based on evidence easily found online, that their employers can access their PGHD on from the data aggregators… more »

…associated with the health plan or other sources, e.g., credit reporting entities. Patients may fear that their employers as well as other entities such as workers compensation, disability, and life insurers or their credit card issuers and mortgage lenders may use this information when making decisions about this patient.
There are likely other examples of pragmatic reasons that a patient might not provide accurate information through patient tools or to their providers for incorporation into an EHR. Similar reasons might prompt a patient to pay for services and prescriptions out of pocket to avoid, e.g., data mining of their health information being used for purposes to which they did not consent. (Unfortunately, the logistics for a consumer to exercise this right will likely make it infeasible to exercise – an example of patient “disempowerment”.)
Having outlined the problem, here’s the requested action item: ONC should find mechanisms to ensure that PGHD will be used appropriately, and with patient knowledge, authorization, and consent as required by law. « less
March 28, 2013 4:24 pm

It’s the existing Doctrine of Informed Consent that requires health care providers to communicate information in lay language so patients can make truly informed decisions, not HIT. However, HIT could and should move beyond its initial role of simply being a conduit to allow patients’ access to more medical information (e.g., research/studies/reports funded by the federal government… which, of course, are paid for to a great extent with health care consumers tax dollars) to an active role of helping to assure that the information conveyed is in language understandable to patients. Specifically, the various HIT organizations, including, ONC, could help persuade all federal health care agencies and/or Congress, to require that all federally funded studies contain a “substantive”… more »

…Summary written in lay language… this could be a prerequisite for federal grant money etc. Information content can, and must, be written to allow consumers to be more informed about their medical procedures, medical treatment, and pharmaceutical options. Other content contributors include the various health care provider professional associations. Those associations should work with their members and their respective professional schools, to require writing parallel study results for the consumer. HIT has an active role there as well because every health care profession has an active HIT component. The bottom line of this work product, which will be ongoing, is that it will create the optimal health care system based on allowing patients, with real time access to more lay information, and the help of their health care provisdders, to make the best truly informed decisions about their own health care. « less
April 3, 2013 10:22 am

yes, tagging entries solves several dilemmas: tracking who entered what for follow-up, correction, more information

March 28, 2013 11:54 am

Yes. Development of education programs & curriculum for pts & providers that is specific to communication techniques, expectations would be great. I have witnessed communication challenges related to patient attitudes (“my provider knows best, I don’t want to insult them by asking a question”). I think active listening, reflective listening, humility are key skills to teach/learn for a pt/provider interaction. Thanks for asking.

March 28, 2013 10:04 am

It will be a challenge but I think attitudes can change. I think education will be the key. Helping patients and providers to understand the societal benefit of being able to study this data in the aggregate would be a good start. Also, insuring that once this data goes into the cloud that it cannot ever be traced back to the patient will be important – that’s an area where ONC could help a great deal by setting standards.

March 30, 2013 1:32 am

In order to meet jherbert’s challenge to convince patients that they should have no control over their “de-identified” health records, ONC could attempt to convince patients that all the scientific literature on the ease with which de-identified information can be re-identified is fallacious.
Compensating patients who wish to contribute de-identified information to the research community, which is well compensated for their efforts, might prompt some patients to agree to this. ONC could conduct an economic analysis on this approach to determine whether the price that researchers are willing to pay is sufficient for patient participation. However, arguing that patients should have an altruistic interest in furthering research, which isn’t demonstrably altruistic in… more »

…its contributions to improving overall health of their communities, may be a “hard sale”.
Unfortunately, in many cases, even getting on the candidate list for a clinical trial, which may not even exist yet, a patient has to agree to disclose all health information (no guarantees of de-identification) into the future to all entities involved in the research community in which a current (or future) clinical trial is being conducted.
So the question of how to convince patients that they don’t own their de-identified health information may be moot due to the research community’s “contract of adhesion” approach to forcing authorized disclosure of the patient’s health information. Interesting that this approach is similar to that used by insurers who are not governed by HIPAA. « less
March 28, 2013 10:34 pm

I strongly recommend that ONC engage with HL7 to expand the definition of “health information”. They have already considered much of the data identified in my original comment and have key experts in knowledge vocabulary and data structures who can further the work. Assembling the necessary expertise absent HL7′s help will be difficult, and you’d likely engage the same experts that HL7 has in any case.

I also recommend involving the ISO TC/215 US TAG, as they share expertise with HL7.

March 28, 2013 11:29 pm

As far as the gap between clinical vocabulary and layman’s terms, I recommend that ONC form a task group (under an existing FACA) to identify the gaps and prioritize addressing them. As a specific deliverable from the task group’s efforts, we need a “translator” that renders clinical content readable by laypeople and provides hyperlink references where reliable consumer sources exist, e.h., NIH articles.

I also recommend ONC (or another HHS agency) establish a “hotline” service to help people sort the difference between urgent and non-urgent care, and to direct them to self-help as medically appropriate. After it is up & running, a transition plan to non-government operation would be appropriate. As part of this effort, public health education would be very helpful and help reduce ongoing costs.

April 3, 2013 10:51 am

PatientsLikeMe has been awarded a $1.9 million grant from the Robert Wood Johnson Foundation (RWJF) to create the world’s first open-participation research platform for the development of patient-centered health outcome measures. Hopefully, operational definitions of experience terms and concepts would be part of this. If not, ONC could sponsor a collaboration to create a dictionary of concepts and terms for the professional and the lay person. In writing my blog – – I find it very challenging to discuss anything related to the health journey in language that anyone can understand. A major role of a change agent in health is translator

April 4, 2013 11:55 am

Question: If ONC sponsored a collaboration to create a shared dictionary, how do you think they should approach that project?
Answer: Creating a shared dictionary is an open-ended project. I’d suggest starting with a small group with patient, caregiver, literacy, policy, reps with at least one person experienced with managing Direct or BlueButton, or a standardized data set like the Cancer research database. This small group could design an ongoing methodology

March 29, 2013 12:10 am

As some clinics have identified clinic infection control staff, patient advocacy staff, let’s have a IT consumer advocacy staff. In my large HMO, my typical response after sending a note to my HMO IT is no or limited response. Often they will send a form e-mail, or they will described a consumer website application that exists in California, but not in Colorado. It took about three HMO customer service staff to say, no you can’t do this in Colorado. It appears as these on-line applications are cascaded thru this large HMO, it is done with limited staff training to answer consumers questions. Colorado’s is the IT step-child of California in my HMO. It creates inequalities in service and access. It makes me want to move to California for the better IT services.

April 1, 2013 4:17 pm

I am a Type 1 Diabetic, I use Accu-Check 360 to remind me to test my blood sugar even thought I have an Omnipod, but do not put in the results, since I can download them to my PC, seems like double entry. I love Noom for Weight Loss, and FitBit, wish I did not have to use SO MANY APPs to keep track of similar things.

April 4, 2013 12:13 am

The self health management apps I have used from Day One is a hydration reminder tool. It has an alarm, musical tones and/or vibration options, an easy to use interface with a variety of liquid measurements corresponding pictures of the cups and sports bottles associated with the ounces or litres held in each.It tracks the daily user input, factoring in weight and height of the user, and creates a graph comparing their daily liquid intake with the suggested daily requirements.It tracks consumption from day to day and week to week. Pretty graphics, ease of use and unobtrusive monitoring and reminders are important bells and whistles.

April 1, 2013 4:19 pm

I have NFC tags stuck on my meds, when I tap the lid with my Smart Phone, I avoid an annoying reminder.

April 1, 2013 4:54 pm

VA, United, Aetna, Kaiser, TriCare are supporting the platform – I would look to those folks for feedback on what marketing and outreach efforts have resulted in their members using the app. Clearly interoperability is not an issue since all of those organizations run on different platforms. Then ask what data (inputs or extracts) have been problematic. I’m not close to the project, but it appears the adoption of BlueButton is taking off. If so, focusing ONC resources on increasing that adoption sounds like a good plan.

April 13, 2013 1:27 pm

I agree with gmartin but take into account that there are a few other identities to the equation.,,,,,,,,,,,,and a few more that are required for these transactions to occur in order for the Patient to have user centric control of the data. In order for the issued ID to maintain its value, it must not be issued nor controlled by any government. This is a global identity issue if I may say. I would not want data in the direct control and management of any one state, nation, or government.

April 4, 2013 11:09 am

Thinking linearly as to 1st, 2nd, 3rd step can be counterproductive in organizational development. The thrust of my argument is creating momentum, so when quality formats for patient inputted information is created; clientele, patients and clinicians will be accustomed to getting and giving information from different assortments of devices and methods.

Think of a Gantt chart in project management where different phases run concurrently. Also, as more individuals transfer information back and forth to their medical institutions a clearer picture of what people actually want will emerge.

April 3, 2013 11:18 pm

Yup, you got it.

April 10, 2013 8:37 am

I think the government could challenge to providers, hospital centers, etc to see the wisdom of transparency and information sharing with patients. Research shows that patients experience higher quality care when they have access to their information. I also believe it contributes to patient safety and lowers cost by avoiding redundant tests (for example, the patient knows when the last colonoscopy was). Models like the PCMH will likely push for more information sharing with patients through Patient Portals. It would be good for the government to set standards for Patient Portals so that the vendors develop features that improve patient care.

The more useful information and the more features (like secure messaging and self-scheduling appts) will improve patient adoption of Patient… more »

…Portals. Over 50% of our recent patients have signed up. They love it, and so do we.

As far as HIE, I am not sure how you could design it so that a patient could access/view what information is shared on a platform; however, I believe this might settle the anxiety of people who are concerned about privacy.

In Maryland, we have also talked about whether MOLST/POLST forms could be posted through HIE so that end-of-life orders are available across the care transitions. I think it would be a nice addition to also allow patients, perhaps via their PCP, to post Advance Directives to the HIE. « less

April 8, 2013 8:39 am

1. Existing Patient Portals: Let’s give patients access to their information. First, we need challenge doctors and other healthcare providers to accept the wisdom of information-sharing with patients (perhaps giving mental health an exception, due to sensitive information). Then, challenge the vendors to expand patients’ access to their charts through existing secure Patient Portals (eCW has an excellent one). Also challenge them to provide a mechanism where a patient can upload information to their chart which, upon review and categorizing by PCP or primary care office, would find a place on the shared electronic medical record.

2. HIE access for patients: I favor single secure login wherever possible. I believe patient portals have to have banking-level security already,… more »

…so perhaps make a way for a patient to see his/her health information that is on HIE from within the Patient Portal of his/her respected PCP. 1st, this increases the market value of providers using EHR. 2nd, it accounts for security concerns. 3rd, it allows patients to see what is on the HIE. How HIE would be available to patients strictly on their own information? Not sure how to solve this. Fingerprint/live doppler/heat-sensitive access? Banking-level security with government-sponsored Patient Portal? The latter idea gets away from single sign-in, though.

The government should support patient-empowerment movements like PCMH. « less

April 13, 2013 9:53 am

Hardly, a person, patient, or healthcare provider would be issued a quantum generated UID, and etc. Emails are unique addresses and if not duplicated, can only be linked to a new ID internal identity database by the use case. If a user prefers a common name email, then they could bridge that to the assigned using two or three factor authentication or even better to or if they wanted that level of authentication. I would prefer that any provider or service create a URL with the prefix My(TrademarkName) and use this as there gateway identity encrypted service. If a person wanted a specific name, they would go to and create… more »

…a unique name and authenticate. Once authenticated, they could bridge this ID to any of the three hundred or so My-ID sites or any registered provider/service My..ID site..say etc. Chained identities are user centric and managed to provide minimal duplication of data. ie. a person is authenticated at and then binds this to and then to, and to When the user presents the registered and authenticated NFC phone at the system, the process is painless and automatic. When the rentor is involved in an accident, the Authenticate medic has access to a host of linked ( authorized data by the vehicle, phone, and even if the person is unconscious. An individual and or service can therefore access specific data without even knowing the name of the person unless the person pre-authorized that data (
The possibilities are endless and would saave cabillions!! « less
April 13, 2013 1:52 pm

To clarify the log-in part of the moderator response..
A login in my mind is an “identity” just like any other item of user ID control. The next generation of login management will be defined as to what you have selected.. maybe at or, or These and maybe other third party Identity management services will propagate your “Login ID” to link your user selected services. So, in a nut shell, select any ID in any capacity, authenticate, bridge, and enjoy. We need to get more simple with this to enjoy life a bit more than discussing this all the time.

April 10, 2013 8:49 am

We are implementing the encounter notification service (ENS), which is still being tested by CRISP. Our hope is that our workflow can encompass the following strategy: use ENS to locate our patient in the healthcare system, go to the Provider Portal to access information, communicate provider-to-provider, obtain test results and discharge summaries prior to patient visit here, and see our patients within a week of discharge from the ER or a hospital.

We are hopeful that CRISP will evolve a single login, embedded within our EMR, that will allow us to access all of the useful features of the HIE they envision: ENS, Provider Portal, secure platform for in-writing provider-to-provider communication, and MOLST/POLST form access/update.

An added icing on the cake, which we believe is crucial,… more »

…is interfacing small practices TO the HIE so our key information is accessible at the point-of-care for our patients (at ERs or hospitals). I believe this will help our hospitalists and specialists to esteem the role of primary care providers more and ensure they have the whole picture. Hopefully, electronic communication won’t totally replace phone calls, especially in urgent cases or where a more involved conversation would be of benefit.

I agree with a recent comment that we are working with real patient, not an iPatient. Nothing will replace the in-person encounter. « less

May 1, 2013 2:48 pm

I work for a NPO called Health Leads which has developed a web-based community resource database. Paired with a structured way to screen for basic resource needs & active follow-up with families, I think we have a model which leverages IT but also helps keep families connected to the clinics where they receive care. The trouble is, because this type of work is not reimbursable with the current fee for service payment structure, it is difficult to justify paying for this service for their patients.

May 1, 2013 2:57 pm

Here is an example of the type of basic resource need I am referring to: a child from a low income family has asthma, which is triggered by the cold weather. In winter-time, the child has more visits to the hospital or primary care clinic. The family is screened for basic resource needs and we learn that the heat has been shut off in their home. The family is referred to a service (such as Health Leads) with a robust database of community resources, and is connected to a resource providing utility shut-off protection services. Health Leads follows up with the family every 10 days until the resource is secured. The basic need for heat in the winter becomes one less factor in keeping this child with asthma healthy during the cold months.

May 1, 2013 3:04 pm

In the example I provide, the effect on the health care system is that the physician does not need to worry about connecting the family with heat & can focus on other reasons (if they exist) that the child’s asthma may be hard to control. If lack of heat was the primary reason, than restoring heat in the home decreases the need to use the emergency dept/primary care clinic, decreases days a parent may have to stay home from work to care for a sick child, and decreases the days a child might miss school. This can be accomplished with a technology backbone which identifies a basic resource need, facilitates referral to a service equipped to both match the patient or family with a resource in the community which can help address their need and follow-up with them until resolution is reached.

April 12, 2013 10:41 pm

To moderator – perhaps some guidance around standardizing or creating guidelines for content review of decision aids. There are several organizations which produce decision aids intended to help people make informed decisions about their medical conditions. It is likely difficult for a consumer to know the level of quality of the information and/ or content of the decision aid.

April 15, 2013 12:59 pm

Correct, in that I do not think it helps primary care providers deliver quality compasionate care. My system is perfectly adequate currently. From the exam room I can link to our hospital’s data base. I receive faxes from the specialists’ consults the same day. I receive lab and xray from outside facilities in 1 day. An EHR would just add more hastles to our day. I already e-prescribe, e-bill and have e-medicine lists, allergy lists and diagnosis lists. I have medication crosschecking prescribing modules and I have Up-To-Date module for current care protocols. The only thing I don’t do is e-records.
I admit that EHR would be available to the specialists and that would facilitate their record keeping, but as a solo primary care practice including OB and inpatient care… more »

…as well as 30% of my time being spent on regional and national efforts, I cannot afford the time or expense to launch and pamper an EHR for the sake of the specialists charting. I provide them with a succinct medical record when referals are made. They are charging huge fees for 15 – 60 min spent with the patient. Yet they are heading to the parkinglot at 4:30 PM while I am there till 8-10 pm most nights and later when on call. Primary care small practices cannot afford the expense. There is no return on investment. My primary care colleagues that have started EHR’s and their staff have suffered greatly and some never even received the reimbursements to which they were entitled.
I did not intend to whine, it just does not make sense for my staff, my patients or my sanity. My patients receive excellent, up to date, compassionate care with time available for listening and excellent access to our office.
I do not see how an EHR will improve that.
If it is true that the marketplace should decide, we are getting requests every day from patients wanting to switch from practices with an EHR to our practice. So it would seem that the consumer doesn’t see the benefit either. « less
April 17, 2013 4:54 pm

Thanks for your question. Not all providers are eligible for HIT incentives and under existing payment schemes are not encouraged to adopt HIT. This includes important care centers for complex patients, like long term care facilities. Changing that would require a legislative fix, so I’m not sure it is appropriate for this strategic plan, but it is still critical.

Even for those providers that have adopted HIT, their systems often do not communicate. For example, when a PCP sends a referral document to a specialist, their systems may be unable to process it. Hospitals may be able to communication electronically with their own outpatient providers, but not with providers outside of their system. These gaps in the technology make it difficult to track patients across care settings, do medication… more »

…reconciliation and maintain shared care plans – all of which are important for coordinated, effective care.
« less
April 28, 2013 9:23 pm

I have not seen anything close to the platform I’m advocating. This platform idea came from the feedback I’ve got from talking with many people as well as my industry experience. It’s also pretty obvious that you have to apply disruptive technology approach to build it and make it adopted across the safety net. Traditional approaches are too costly and can’t be scaled up. To demonstrate this is possible, I’m building prototypes and

April 29, 2013 12:14 pm

continue my thoughts…

I’m building a prototype to demonstrate it’s feasible to cost-effectively build the comprehensive patient engagement services and provide it for free to patients and the safety net.

The language barrier is a typical example to illustrate how disruptive thinking is essential. We know we have to have health professionals to translate ACA enrollment education contents and tools to other languages in order to ensure the quality. Everyone will also tell you this is a very very costly and time-consuming process, particularly when you are talking about all common minority languages. In one word, impossible.

But, as I talk with people at Palo Alto Medical Foundation’s cultural competency group, Asian & Pacific Islander American Health Forum,… more »

…Kaiser Family Foundation, I see commitment from public health organizations and care providers to translate ACA enrollment education tools and doctor visit summary to serve their patients better. To me, the question really becomes: How can we provide an information system to engage these health professionals and harness their translations for the benefit of everyone? For example, navigators will explain how insurance marketplaces work in whatever languages their clients understand. Is it possible to give the navigators a tool to make the translation process super-efficient for everyone? I bet it is entirely possible to build a website with ACA enrollment education and tools fully functioning in all common minority languages just in time when the enrollment starts. « less
May 2, 2013 9:10 pm

Yes. We ran a PHR (smart card based portable health record) which patients adopted to track blood sugar, BP, vitals, mood etc. Face-to-face encounter is a brief interlude to the continuous healer-patient engagement for chronic diseases, obesity,psychiatry, elder care etc. In spite of the rush that ED workflows have, I take time to explain the disease/problem and get patient buy-in to actively engage them in care. I have seen many myths crumble…patients dont understand medicine, they will lose the records, they will shop around using the info, can lead to litigation. etc.

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