§1. Overview

Health IT can be used to collect, manage and share health information more easily and effectively. This helps consumers and their care team make more informed health decisions. Also, eHealth tools (such as mobile health apps, personal monitoring devices, and personal health record systems) can help people manage their health conditions and stay well. When consumers and providers use health IT well, the results may include:

  1. better care that is more coordinated and individually appropriate;
  2. fewer unnecessary tests and procedures;
  3. fewer preventable illnesses and avoidable hospitalizations; and
  4. better management of chronic conditions.

The federal government wants to empower people to use health IT to improve their health and the way they interact with the health care system. Increasing consumers’ access to their own health information is one key step towards this goal. Increased access will lead to the free flow of patient data from separate electronic health record (EHR) systems. This in turn allows consumers and providers to take advantage of new applications that help people manage and make sense of their health information. In this post, ONC is looking for feedback on steps currently being taken to enable information access, and for ideas on how these steps could be even more effective in the future.

So far, the focus has been on increasing access to clinical data (information gathered or created by health care providers) and claims data (information from health insurance companies). To discuss new efforts in the area of information that consumers themselves gather or create, go to Patient-generated health data.

Two other key steps toward empowering individuals through health IT are: (i) encouraging consumers to use eHealth tools to manage their health and (ii) promoting use of health IT and eHealth tools to encourage providers and patients to think and act as partners in managing health and health care. You can discuss the steps currently being taken in these two areas at Current Efforts: Empowering consumer action and Current Efforts: Shifting attitudes.

§2. New regulations

New federal regulations give financial incentives to eligible providers that adopt and “meaningfully useEHRs in ways that improve health outcomes. Beginning in 2014, participating providers must allow patients to “view, download, and transmit” their health data. This means that consumers must be able to:

  1. see their health information online;
  2. download the information to their computers; and
  3. export it to a personal health record system or other electronic tool or application that helps them manage their health and coordinate the care they are receiving from all their providers.

The regulations also support better communication by requiring providers to offer patients secure email messaging so they can exchange information between office visits.

  • How can ONC encourage providers who may not be participating in the incentive program to offer their patients a way to view, download, and transmit their electronic health information?
  • What further steps would encourage providers to support their patients’ request to access their information?

For other discussions about the role federal regulation should play, see

Current Efforts: Shifting attitudes

Identifying useful health information

Supporting “shared decision-making” through health IT

Patient generated health data

§3. Enabling automated access

One way consumers can access their health information is through “Blue Button,” a tool that provides a simple, one-click method to view and download digital health records or insurance claims information securely.

Today, 88 million Americans have access to Blue Button through the Department of Veterans Affairs, Medicare, and several large health insurance companies, and there have been over 1.4 million Blue Button downloads.

ONC is working with health insurers and other organizations to encourage the use of Blue Button by their members. To make health data downloaded through Blue Button easier to read and understand, the federal government is encouraging developers to build apps and tools that combine the data with other information sources.

The government has worked with a group of organizations to develop a standard set of technical specifications for Blue Button that will allow consumers to choose a place where they’d like any updates to their health information to go. This will let them receive automatic updates when new information is added to their EHR.

  • How can ONC encourage consumers to access their health information through Blue Button and similar tools?
  • Are there reasons why patients are not currently asking providers to share their health data with them, or using the electronic information that is available?
  • Are there ways that ONC could better encourage and inform people of the benefits in receiving access to their health information?
  • How can ONC help providers better inform consumers that they have the right to access their health information?

§4. Creating interest/demand

ONC developed an animated video to educate people about the advantages of:

  1. getting electronic access to their health records;
  2. sharing information electronically with their providers and caregivers; and
  3. using eHealth tools to manage their health.

Recent video challenges have invited the public to share stories of how they use health IT to manage medications, cancer care, and other issues.

The Office for Civil Rights developed a memo that explains patients’ legal rights to see and get a copy of their health information. They can take this to the doctor’s office, hospital or health plan to request health information in the format they want (such as an electronic or paper copy).

  • What further guidance, policies and educational materials would encourage consumers to request access to their health information and use that information to become more engaged in their health care?
  • How can the federal government encourage consumers to become more comfortable asking questions and communicating electronically with providers about their health information?
  • What further guidance, policies and educational materials would enhance providers’ ability to give their patients better access to their records?

For other discussions about developing educational and training materials, see

Current Efforts: Empowering consumer action

Patient-generated health data

Decreasing health disparities through health IT

§5. Privacy & security

ONC recognizes that privacy and security concerns may impact the willingness of consumers and providers to use health IT to increase access to health information. Privacy and security are the topic of a separate section of the Strategic Plan (Goal 3), since these concerns cut across all areas of health IT. Although this public comment period is not targeted at updating Goal 3, ONC will be revising that section of the Plan and your discussion of these concerns, and ideas about addressing them, will help the federal government decide on appropriate future steps.

(You can read the current version of Goal 3 by clicking the Background Documents tab at the top of this page, and selecting 2011-2015 Federal Health IT Strategic Plan).

Check out all the available topics to consider privacy and security in particular consumer health IT contexts.

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March 27, 2013 6:22 pm

Allow for unidentified anonymous testing, patient visits and reporting. This can be achieved by many means – for example – issuing a single use patient ID number and passcode.

Additionally, one should provide meaningful security that does not allow for private information to leak out – even if your server security (or the patient’s device security) is breached. (The best way to ensure this is to allow for unidentified anonymous reporting, and to explicitly minimize the data regarding the user that is stored when they visit the site.)

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    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?

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    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?

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    March 28, 2013 10:21 pm

    Yes, asking providers to provide a Blue Button tool for consumers would help open up medical records for the consumer. To go thru 800 pages of medical records is overwhelming. My HMO will not digitize medical records from outside providers. I ended up doing a painful re-testing, because the clinc couldn’t locate my paper records from the outside provider in my HMO’s centralized medical records. What this says, is that I need control of my medical information, it’s in my best interest. Let the consumer be the check and balance to the medical institution/provider. Backed it up with legislation that ensures compliance.

    Sincerely, Sandra

    Use these buttons to endorse, share, or reply to the preceding comment by sandra.
      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?

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March 28, 2013 6:32 am

SUGGESTION – shift the focus away from data and information towards using health IT to strengthen the RELATIONSHIP AND OUTCOMES between everyone on the care team – including patients and their care givers. The “r” in EMR should be “relationship” not “record”

Example: I both worked at and received my care at Group Health Cooperative (owned by its 620,000 patient/members)and we have had an EHR since 2005 and over 60% of all members use it to not only download data like labs but to stay connected to our care team via a patient portal, mobile apps, email etc combined with new roles on the health care team like 24/7 consulting nurses, and workflows that include the patient at the design stage vs after the fact (engagement)

The goal isn’t… more »

…data but tool that allows connection anytime anywhere to the health care team.

PRO’S CON’S
Many people discredit the group health mayo models because they are integrated systems (docs on salary and investments from health IT are kept in house vs going out the door to the insurance co’s) but this works in the “private” sector as well

PERSONAL EXAMPLE -After I left GHC I got my care via the University of Washington (uses the same EHR as Group Health) I once started to get sick a few hours before I had to fly out of town on a business trip. I called the after hours consulting nurse and she pulled up my records, authorized an RX that was sent to a national chain in Boston, when I arrived I picked it up, the next morning my doctor’s office nurse called me up to check on me. The entire event happened on the phone and online and took my needs and workflow into account and the tech enabled it.

DATA OR REFERENCES – Group Health Cooperative started their EHR implementation by giving patients access first to their clincial records and online services and is now one of the top 10 ranked health plans in the US and the top ranked in the region – http://www.ghc.org/news/news.jhtml?reposid=/common/news/news/20120920-quality.html

Critical to their success was using healthIT to identify other areas that needed to change and they also shifted to the medical home model in the last few years. https://www1.ghc.org/html/public/features/20101001-medical-home.html “For every dollar Group Health invested, mostly to boost staffing, it recouped $1.50.”

CONCLUSION HealthIT wasn’t the sole solution but it was a critical foundational component to this change and the benefits are clear both in terms of quality, patient satisfaction and provider retention. It goes way beyond merely sharing information and data and is instead a core backbone of a health care system that meets the six pillars and 3 aims of a learning health care system of the future – foundational to that is patient centered design and care (vs after the fact consumer engagement) « less

Use these buttons to endorse, share, or reply to the preceding comment by cascadia.
    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.

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March 28, 2013 8:27 am

Administrative Data Quality-With the implementation of the electronic medical records comes opportunity for improving data quality. It is time for the DHHS to require all medical organizations that are reimbursed under Medicare that submits medical data to have at least one certified medical coder on staff to help maintain the quality of our administrative data.

Administrative diagnostic and procedural data is important to setting population health targets; it influences how the finite dollars of public and private health research is distributed and affects vital health research and processes, to say nothing about medical service reimbursement.

With the implementation of ICD-10-CM/PCS the complexity of the data has increased. It is time for a mandate for certified medical coders. This… more »

…would be similar to what happened with the implementation of the Clinical Laboratory Improvement Act. There was significant improvement in laboratory results due to the mandated quality assurance requirements.

The general Federal Sentencing Guidelines is no longer substantial enough for maintaining our national health information systems databases, which are derived from the providers of care. We need more detailed regulatory mandates and higher medical coding standards.
Dr. Meyer
« less

Use these buttons to endorse, share, or reply to the preceding comment by madelinemeyer3.
    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.

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March 28, 2013 9:02 am

The portals that the patients are given their data through are of very low quality, non user-friendly and usually unattended – I have seen more then one practice that didn’t answer the secure messages. The ones I had access to were implemented to check the boxes required to pass the meaningful use requirement rather than help clinicians and patients. The clinicians and patients are at the bottom of the ladder in this with so little say in the game.

Maybe one solution would be to survey clinicians and patients on how the tools they are given are working. Have the EP/EH pay a few patients to give feedback on the system. Have all clinicians give feedback on the tools and suggestion on priorities.

Have a mandated quality improvement effort for the HIT tools.

Don’t… more »

…ask for more, ask for quality, usability, and end user (clinician and patient) satisfaction.

It is very difficult for patients to complain to their doctors – we see how stressed out they are and how the systems do not help. A direct line between (certain, super-user) patients and the IT Department would be very useful. « less

Use these buttons to endorse, share, or reply to the preceding comment by ileana balcu.
    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.

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March 28, 2013 9:16 am

The tools that the patients have are low quality. Hospitals can force physicians and nurses to use them, but they can’t force patients. The key is to improve the tools.

Maybe ONC can help by getting direct patient feedback on the tools used and forcing vendors/ HIT departments to resolve the issues: usability and quality of data.

On the Pledge program for example, allow patients to feedback how the promised Blue Button works for them. In amazon.com style: rating plus comments.

Maybe this feedback should be an integral part of the Blue Button download? Once you tried to download you are asked how that worked for you.

Use these buttons to endorse, share, or reply to the preceding comment by ileana balcu.
    March 28, 2013 10:13 am

    In many ways I think ONC could help by getting out of the way. Many features we were intending to implement, based on patient feedback, had to be delayed in order to implement functionality in lign with the MU program.

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      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?

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      March 29, 2013 9:10 am

      For some hospitals/providers, I think this might be better indeed, but for a lot of others, just getting them to be aware of the things that IT should do: patient registries, giving patients their data, secure messaging, etc. needed to be done. Probably some hospitals/providers can do better without the handholding, while others need some nudging.

      A non-punitive, consultancy as needed on a case by case basis would be nice. If you’re doing well and have good plans to move forward, we just learn from you and go to someone else!

      Use these buttons to endorse, share, or reply to the preceding comment by ileana balcu.
        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?

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March 28, 2013 6:59 pm

HL7 is a poorly designed system. It should be more like XML.

Use these buttons to endorse, share, or reply to the preceding comment by tiger.lilly.7315.
    March 29, 2013 3:11 pm

    Thanks for your comment and welcome to Planning Room, tiger.lilly.7315. What specifically would you like a system like that to accomplish?

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March 28, 2013 7:59 pm

We need to detach privacy and security from the health care IT domain and realize that it is cross-cutting. People have varying preferences for information access protection and sharing, with a strong overlap with other domains such as finances, employment, social interactions, and personal communication. It would be ideal if there was a single place for people to state their preferences, with a default of opt-out rather than any assumed opt-in.

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March 31, 2013 10:01 am

I think that for those patients and providers who wish to be more tech-enabled I think the EHR efforts are at cross purposes with with HIPAA efforts. Before HIPAA my PCP and I exchanged emails about my lab results, my glucose numbers, etc. Now emails are blocked in the institution, partially because maintaining secure messaging for all brands of ISP, POP and readers is time consuming. It’s fine for me to be able to log into the patient portal and see my latest lab results, but not much improvement in treatment efficiency if I can’t communicate with my PCP about them.

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    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.

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    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?

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April 2, 2013 8:58 am

One obstacle to increased interoperability is the issue of patient identity resolution, so the data sent between providers can be filed with the correct patient…while probablistic/deterministic algorythms are available, why not provide a national health ID as part of the solution…which will help vendors be in sync on a key identifier, that could be used in conjunction with other identifiers, to increase the efficiency of data sharing

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    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?

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      April 13, 2013 1:27 pm

      I agree with gmartin but take into account that there are a few other identities to the equation. MyPatientID.com, MyProviderID.com, MyVendorID.com, MyBusinessID.com, MyHeathcareID.com, MyDoctorID.com, MyNationalID.com, MyInsuranceID.com, MyProviderID.com, MyChildID.com,MyDonorID.com,MyDataID.com,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 MyGeneticID.com data in the direct control and management of any one state, nation, or government.

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April 2, 2013 9:28 am

I recently was sent a copy of the infographic “EHR: How the connect you and your doctors”. I am sorry to say that this document is not appealing, useful or easy to read. It has too much info in it that is presented in a cofusing manner. I have asked colleagues if they will read it or use it and all have saaid “no”. To educate the public we need simple, straightforward clear info and not what has been created. Agasin, I am sorry to say, this infographic is a waste of our tax dollars and the time of the prson who created it. I can’t imagine who approved such a document either. This document is definitley a turn off.

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    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?

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April 3, 2013 12:36 pm

Creating a common protocol for fitness apps such as calorie counter by myfitnesspal, weight watchers mobile apps and many other apps, that could be easily viewed and sent to medical providers and researchers would be a noncontroversial beginning to give medical institutions familiarity with the process of patient inputted information.

Use these buttons to endorse, share, or reply to the preceding comment by eddie morgan.
    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?

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      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.

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    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?

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      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

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        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?

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April 7, 2013 2:25 pm

With the enormous amount of data, apps, programs, insurers, providers, etc. It is the patient with varied levels of intellect that will be lost. Simple identity name portals need to be created to route the individual and or services to the common identity profile. I told Obama years ago that they could use the following URL’s to create user centric UID’s specific to this cause and they are still free to use. This is a Global identity bridge and not a silo/silo approach. The portals I offered were MyPatientID.com, MyMedicalID.com, MyInsuranceID.com, MyHealthcareID.com, MyDonorID.com, and a few more. See complete list of identity bridge url’s at BridgeIdentity.com. Therefore, if a patient was created, it would have an email of xxxx@mypatientid.commore »

…or a medical record would follow the same. Keeping it this simple will save enormous time for end users as well as integrated support systems. Not to mention privacy. « less
Use these buttons to endorse, share, or reply to the preceding comment by planotim.
    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?

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      April 13, 2013 9:53 am

      Hardly, a person, patient, or healthcare provider would be issued a quantum generated UID number@MyPatientID.com, MyMedicalID.com and MyHealthcareID.com MyInsuranceID.com 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 MyBiometricID.com or MyGeneticID.com if they wanted that level of authentication. I would prefer that any provider or service create a URL with the prefix My(TrademarkName)ID.com and use this as there gateway identity encrypted service. If a person wanted a specific name, they would go to MyNameID.com 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 MyBaylorHealthID.com etc. Chained identities are user centric and managed to provide minimal duplication of data. ie. a person is authenticated at MyGovernmentID.com and then binds this to MyTravelID.com and then to MyRenterID.com, MyInsuranceID.com and to MyPhoneID.com. When the user presents the registered and authenticated NFC phone at the MyAvisID.com system, the process is painless and automatic. When the rentor is involved in an accident, the Authenticate MyResponder.com medic has access to a host of linked (MyEmergencyID.com)and authorized data by the vehicle, phone, and even MyFacialID.com 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 (MyDataID.com.
      The possibilities are endless and would saave cabillions!! « less
      Use these buttons to endorse, share, or reply to the preceding comment by planotim.
        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?

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      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 MyLoginID.com or MyComputerID.com, or MyPortalID.com. 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.

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April 7, 2013 2:44 pm

Two such portals that I can provide are MyOptInID.com and MyOptOutID.com. Senario..A student logs into MyStudentID.com then selects a bridge identity function to MyMedicalID.com and then to MyOptInID.com. There the student would be presented to repository of all medical related opt in selections from providers etc.. Same for the MyOptOut. Keeping it simple and standardized with specific name services will help all parties involved and minimize the maze or User interfaces.

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April 21, 2013 8:03 pm

Here is an actual example of why we need new regulations. A young couple were in the middle of a nasty divorce. The young man started seeing a psychiatrist. His father worked for his medical insurance provider. The father didn’t want his son to see a psychiatrist. So the father had his son’s checks from the insurance company mailed to his home. The checks were intended to be used by the son to pay his psychiatrist. Instead, the father was destroying them. The son found one of these checks in the father’s garbage. When he and the “shrink”, separately and together, contacted the company and were told there was nothing they could do. The problem has been rectified.

But, the most important fact is this, had the father not been employed by this company, he would… more »

…not have been aware of the fact that his son was seeing a psychiatrist.

There are a lot of parties involved in a consumer’s health care. Will the new regulations be taking examples such as the one I mentioned into consideration when drafting the laws? Consumers will need more than anonymous testing and coded files if their records are going to be made more accessable and private. Encryption codes might help with the privacy issues? « less

Use these buttons to endorse, share, or reply to the preceding comment by tanja meece.

Medicare-Medicaid covers approximately one third of patients nationally but we expect that providers participating in the Meaningful Use incentive program will make benefits like patient portals available to their entire patient populations, rather than only their Medicare and/or Medicaid beneficiaries. In this way, the meaningful use of certified EHR technology will gradually fold in large numbers of people. To reach even greater numbers, ONC should facilitate the development of public reporting on which providers offer consumers the ability to download their own health information, use secure messaging, etc., by making the CMS data from meaningful use attestation publicly available. In alignment with HHS’s Open Health Data initiative, this could enable private sector entities to develop… more »

…websites consumers can use to select providers that offer online access and other electronic tools. We believe that would incentivize more non-meaningful use eligible providers to begin offering these tools as a competitive market advantage. « less
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Requiring that patients have the ability to view, download, and transmit (V/D/T) their own health information was a monumental advancement for consumers in Stage 2 of Meaningful Use. We strongly encourage ONC to plan and implement corresponding beneficiary engagement and education efforts that will be necessary to fully realize the potential of patient access and use of their electronic health information. For example, current Medicare beneficiaries who download their claims data from CMS via Blue Button may easily be overwhelmed by the format, amount, and complexity of the information they receive. It is incumbent upon HHS and ONC to ensure that providers make consumers aware of (and link directly to information about) tools like iBlueButton and other applications that upload, organize,… more »

…and display this information in ways that are understandable and useful to patients, families, and providers.

ONC should be working with stakeholders to ensure that consumers can view, download, or transmit their health information in the patient’s preferred language. ONC should consider variations in both health literacy and health IT literacy, which may affect consumers’ likelihood and ability to electronically access their health information. ONC should develop guidance and resources promoting online patient access in plain language (as well as non-English languages) and accompanied by graphic explanations, which are often helpful to patient understanding.

HHS should also consider making very public the meaningful use registration and attestation database to enable consumers to identify and choose providers that have the ability to electronically exchange health information, and those offering View/Download/Transmit capability.
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A recent survey by the National Partnership on consumer trust and value in health IT found that perceived value of online access is driven both by patient preferences (such as for communicating in person) but also significantly by available functionality, such as secure messaging, making appoints and refilling prescriptions online, correcting information, etc.. Online access has the potential to be used on a more widespread basis if providers partner with patients in designing and selecting the functionality most useful to them. It is also essential that doctors or their staff themselves play a role in increasing the effectiveness and use of the access they offer. Survey data from NWPF shows doctors and nurses are trusted by patients. When patients have online access, 80 percent use it.… more »

…(National Partnership for Women & Families, Making IT Meaningful: How Consumers Value and Trust Health IT, 2012). « less
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(Q#4) First, we can inform patients of their rights but it is even more important to make access to health information easy for patients and their family caregivers. Advancing the Blue Button concept in the public and private sectors is key to this effort. In terms of education, ONC should use the MyMedicare.gov website, the Medicare handbook and other relevant Medicare consumer publications, and the Medicare Annual Wellness Visit as opportunities to inform consumers of their right to access their health information, and the benefits of doing so. It should consider similar avenues in Medicaid and CHIP.

We also recommend that the automated Blue Button feature (which directs a provider to transmit an individual’s health information to another location of the patient’s choice, such… more »

…as from specialist to primary care portal or non-provider affiliated personal health record) be a part of all CMS and ONC outreach efforts, policies, and models that advance view, download, and transmit capability.
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(Q#1) Recording and implementing patient communication preferences are vital to ensuring that patients receive information in a medium that is most accessible and meaningful to them, which promotes enhanced patient and caregiver engagement and follow-up. EHRs should have the capability to differentiate preferences for varying kinds of information. For example, individuals may want to receive lab results by email, but prefer phone call or text message reminders regarding upcoming appointments for follow-up care.

It is also critical to enhance non-English patient-specific education materials. ONC should encourage, if not require, providers to strive to offer materials in the language spoken by their patients, no matter what that language is, and certainly in the most common languages… more »

…other than English. Individuals may need or want to receive their health data in languages other than English, to ensure comprehension and correct treatment.

Providers remain one of the most trusted sources of information, and play a vital role in helping their patients understand what information is now easily accessible to them and how they can use it. It is also important for providers to expressly encourage their patients to access and use this information to participate in their own care, both during the visit and in signs and brochures visible in the waiting room and even the examination room. ONC should also consider developing a well-vetted set of materials that physician practices could use routinely, about both the patients’ right of access but also the benefits of online access. These materials should be available in multiple languages.

ONC should be using the infrastructure and support offered by the Regional Extension Centers (RECs) to train providers on best practices for engaging patients, including ways that providers can integrate online access for patients into their own workflow. High-performing practices focus on how it, as a practice, can benefit from online patient access; those benefits typically include significant efficiencies in provider and patient workflows. RECs should help providers understand best practices. RECs could also help train providers in how to convene a group of patients to collectively create strategies that enhance patient access and use of their health information.
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(Q#3) Survey data show that consumers are highly supportive of having online access to their health information, when it’s offered in easy and well-managed ways. (Making IT Meaningful: How Consumers Value and Trust Health IT, 2012; Markle Foundation 2011). It’s critical to ensure that electronic information made available is useful and beneficial to patients and their family caregivers. Providers should offer different functionalities for online access, such as for communication or correcting information.

ONC should encourage and/or require translation of patient health records into the patient’s preferred language, at least for the most common non-English languages. Encouraging patients to electronically access their health information is important, but it is critical that… more »

…patients and their family caregivers understand the records they are accessing.

We also urge ONC to add a criterion to the Meaningful Use program measuring timeliness of response from providers to their patients who use secure messaging. We do not propose requiring a specific timeliness standard, only the measurement and reporting of timeliness rates.

ONC should use the HIT Consumer Assessment of Healthcare Providers and Systems (CAHPS) questions to assess usefulness of providers’ use of health IT. ONC should also work with HHS to integrate a small number of the most important HIT CAPHS questions into other CAHPS surveys to maximize patient experience data on providers’ use of health IT.
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(Q#2) The Health Insurance Portability and Accountability Act (HIPAA) requires that providers provide patient access to their own health information. However, HIPAA is often mis-understood by providers. More provider education would be helpful, and making downloadable materials available online for patients who need them.

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May 8, 2013 3:34 pm

How can ONC help providers better inform consumers that they have the right to access their health information?

Have EPs endorse the use of Blue Button in Medicaid, CHIP and Medicare Advantage programs. Blue Button could also be a component of the new Health Insurance Exchanges of the ACA.

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May 8, 2013 3:46 pm

What further guidance, policies and educational materials would enhance providers’ ability to give their patients better access to their records?

Post-acute care providers, such as home health care and hospice providers, who serve 12 million patients in Medicare and Medicaid, need to be better equipped with educational materials and online resources on sharing health information electronically so that they can educate the patients and family caregivers they serve.

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May 8, 2013 8:07 pm

If diverse and underserved patients are to gain meaningful access to, and meaningfully use, their electronic health information, that health information must be available in “human readable AND useable formats”, including appropriate health literacy and numeracy levels, languages in addition to English, and formats appropriate for individuals with visual impairments and physical disabilities. The principle of using and making available multiple formats and channels for all electronic communication of health information must be a standard requirement for all patient-facing heath IT. For example, electronic copies of clinical summaries, care coordination documents, and discharge summaries will not be accessible or meaningful without alternate and multiple formats. Sending appointment reminders… more »

…by email in English to individuals who do not speak English as a primary language, or do not have low- or no-cost internet access will be ineffective. If these requirements are not explicit, then the implementation of health IT will only INCREASE disparities experienced by diverse and underserved patients and communities.

ONC should also work with other federal agencies such as the Federal Communications Commission to address and reduce digital divide issues (including the availability and cost of internet and broadband access, and data costs for mobile/smart phones) for racial and ethnic minorities, limited English proficient individuals, seniors, those living in rural areas, and individuals with disabilities.
-California Pan-Ethnic Health Network

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