§ 1. Benefits and challenges

Health-related data that the individual patient creates or gathers is called “patient-generated health data,” or PGHD. People collect and share their PGHD through various consumer eHealth tools (such as mobile apps, Internet-connected monitoring equipment, personal health record systems, and patient portals connected to EHRs).

PGHD are different from traditional clinical data in two important ways. First, consumers, not providers, collect and record this information. Second, consumers choose how to share or distribute the information to health care providers and others. Sharing PGHD can give providers more complete information about the individual’s health. It can also help providers understand more about how effectively the individual manages his or her health. Providers can use this information to monitor patients remotely, reducing office visits and perhaps even emergency room visits.

However, providers may need to build in processes and time to evaluate this information and determine whether to incorporate it in the patient’s record–as well as to determine when to promote PGHD use (such as encouraging a patient to use a food choice or cholesterol tracking app as part of the care plan). Usability, innovations in technology, education, health literacy, economic disparities, and similar factors can be barriers to gathering and using PGHD.

  • What policies, tools, resources or educational materials would be most useful to help consumers adopt and effectively use eHealth tools that generate PGHD?
  • What policies, tools or resources can best help providers integrate PGHD into care plans and work flow processes?
  • What type of data would be most useful for patients to generate for providers to help create a more individualized care plan?
  • How can the government leverage current partnerships, such as working with participants in the Blue Button Pledge Program and with other public-private consumer and provider collaborations, to identify opportunities and barriers to PGHD?

For other discussions about developing educational and training materials, see:

Current Efforts: Enabling information access

Current Efforts: Empowering consumer action

Decreasing health disparities through health IT

§ 2. Researching how PGHD can benefit health

Consumers can use a wide variety of tools to capture health information, but it can be challenging to identify the ways in which PGHD might improve outcomes and the user experience. For example, an individual with well-managed diabetes might not improve overall health through a mobile app to track and submit glucose readings to his/her provider, but he/she might benefit from the increased communication with the care team that the app allows.

Additionally, providers likely will need guidance to change their practice patterns to incorporate the data, and to identify how office staff and resources can help patients (who may be new technology users) to use PGHD effectively. Research and “best practices” identification should help providers and the care team shape their role in evaluating and “prescribing” the most effective PGHD to improve consumers’ ability to self-manage their care.

Researchers can help identify:

  1. what PGHD is most useful to improve health and care processes;
  2. what types of consumer and provider education and support can ease the generation and use of PGHD; and
  3. how best to integrate consumer eHealth tools, and the information they generate, into people’s daily lives as well as into provider work flow.
  • How can ONC gather use cases or survey best practices to identify how consumers and providers use PGHD?
  • Are new or proposed research activities occurring on PGHD that the government should be aware of?
§ 3. Role of government

PGHD covers many kinds of data, including consumer-generated lists of issues to cover at a clinical appointment. Federal and state policies will need to answer important questions about what should (and should not) be documented in medical records, and who controls the data. Other issues to consider include the operational support and management of PGHD received at the point of care.

In addition, integration of PGHD into an EHR poses many challenges. ONC and many researchers are currently working to come up with solutions around “data provenance” (that is, the ability to trace where information originally comes from, how it has been changed, etc.) The goal is the technical capability to add labels (“meta-tagging”) to data elements that show their origin, even when they are shared with a third party. Understanding where PGHD comes from is essential to deciding whether and how it should be added to the patient’s EHR.

  • How can regulations, certification, and standards support PGHD-sharing either prior to a consumer’s clinical visit or at the point of care?
  • What are the primary obstacles to the use and integration of PGHD in these contexts?
  • How can regulations, standards, and other policies best address these obstacles and support the efficient use of PGHD, protect patient privacy, etc?

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

Current Efforts: Enabling information access

Current Efforts: Shifting attitudes

Identifying useful health information

Supporting “shared decisionmaking” through health IT

§4. 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).

People's Comments

(50)
Comments RSS Feed
This discussion is now closed.
show all (50)
There are no comments. Click the text to your left to make a new comment.
March 26, 2013 3:18 pm

This seems an obvious way to record medical history. Both health related events and personal tests using new personal apps could be recorded. There is an problem of reliability and validity of patient provided data, but that has always been a problem.

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

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

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

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

        Use these buttons to endorse, share, or reply to the preceding comment by Moderator.
March 27, 2013 4:58 pm

Clinicians think in terms of problems, I think in terms of health goals. The whole health team (me, designated caregivers, professionals, family) should be able to enter and track health goals.

Use these buttons to endorse, share, or reply to the preceding comment by healthhats.
    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”.)

    Use these buttons to endorse, share, or reply to the preceding comment by Moderator.
      April 3, 2013 10:22 am

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

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

        Use these buttons to endorse, share, or reply to the preceding comment by Moderator.
March 28, 2013 9:57 am

Yes – I do agree with Bill Rowe that data quality is a potential issue. There a wide range of possible causes for these issues ranging from a lack of technical savvy to misinterpretation of the data needed to bias. For instance, a patient may feel uncomfortable reporting the actual amount of alcohol s/he takes in daily.

Use these buttons to endorse, share, or reply to the preceding comment by jherbert.
March 28, 2013 10:36 pm

People are often seen as unreliable suppliers of clinically-relevant data about themselves. This needs to be examined and, to the extent it is true, remedied.

For example, clinical vocabulary used by providers is more precise than how patients might speak of their health. How best do we bridge that semantic canyon? Similarly, many people do not understand how to determine when they need urgent care versus self-care or non-urgent care. How do we triage more effectively, involving the patient in the process?

Use these buttons to endorse, share, or reply to the preceding comment by glenfmarshall.
    March 28, 2013 11:17 pm

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

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

      Use these buttons to endorse, share, or reply to the preceding comment by glenfmarshall.
        March 28, 2013 11:47 pm

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

        Use these buttons to endorse, share, or reply to the preceding comment by Moderator.
      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 – http://www.health-hats.com – 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

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

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

      Use these buttons to endorse, share, or reply to the preceding comment by healthhats.
        April 4, 2013 1:19 pm

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

        Use these buttons to endorse, share, or reply to the preceding comment by Moderator.
March 30, 2013 2:05 am

Consumer ehealth apps, capable of compiling an individuals self-entered data and then generating a printable report would be beneficial to both medical professionals snd their clients and empowering for the client. But, there is a serious drawback involved with this type of tool, once the new wears off will the users become lax about entering information on a regular basis or enter false information to keep from hearing a lecture from their doctor? I have many apps on my smartphone that I have forgotten downloading and have never used or used frequently in the first weeks after downloading them and then lost interest or had little time available, due to one thing or another, to make daily entries into on a regular basis. Those are still great apps to have available, but in my case, they may… more »

…not get the regulsr usage and input necessary to show a pattern of patients’ self-health management and history. « less
Use these buttons to endorse, share, or reply to the preceding comment by tanja meece.
    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?

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

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

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

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

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

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

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

    Use these buttons to endorse, share, or reply to the preceding comment by Moderator.
April 1, 2013 8:54 pm

UCSF is currently doing research on using different apps to track heart rate in the field, comparing multiple modalities against each other. Our institution is looking at behavioral triggers for congestive heart failure patients, and trying to combine choice architecture with mHealth apps to help modify habits as well as monitor patients outside of the hospital. And lastly, we will be applying for research grants to see what is the ‘limit’ on the number of monitoring devices and data streams for patients before they hit ‘monitoring fatigue’

Use these buttons to endorse, share, or reply to the preceding comment by gmathews71.
April 2, 2013 12:30 pm

Not all data are the same. Patients are the BEST source of data for some data (Social History, Family History for example) and good validators of other data (medications they are taking, allergies they have, current problems). Doctors are better at capturing clinically relevant symptoms, diagnostic findings etc.
We have so devalued and ‘de-informed’ patients over the last few centuries that it is easy to dismiss “all their input” – Additionally, patients are not used to giving it, dont know how to, and dont know the form to submit it in. These are not reasons to not persist in the goal of getting PGHD or in recognizing its inherent value.

As patient contributions are made easier and they get validation for the good content vs the bad, so will this become… more »

…a very important data source.

I agree “source” of data is an important data label. « less

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

    Use these buttons to endorse, share, or reply to the preceding comment by Moderator.
April 6, 2013 2:17 pm

There are many benefits possible, but a possible long-term benefit might be fewer unnecessary trips to hospital ERS and doctors’ offices. If consumers are able to easily find information online, using apps on phones or communicate by phone, text messages or internet,, live chats and instant messaging, they are better capable of making an informed decision about making those trips. Or a better understanding of how to explain their health problems or symptoms in a manner medical professionals wi understand.

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

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

    Use these buttons to endorse, share, or reply to the preceding comment by Moderator.
April 11, 2013 11:22 am

Funny you should ask-

About two years before I stop working at the hospital system, I saw patient who was transferring to me because of insurance issues from the other large group in town. The interesting thing about this is that the hospital and the other large group in town used the same electronic health record and it was still impossible to transfer data from one system to the other even though both records were the same. (Apparently the records were different enough and customizable enough that it was impossible to transfer digital data). What the heck is going on. Disgraceful.

Sure, here is my suggestion. Since most of the large players in the industry supply enterprise systems which are very costly, my suggestion would be to withhold Medicare money from hospitals who have products… more »

…with companies that will not play ball with regard to interoperability. That should get someone’s attention. « less
Use these buttons to endorse, share, or reply to the preceding comment by lspikol.
    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?

    Use these buttons to endorse, share, or reply to the preceding comment by Moderator.
April 25, 2013 3:14 pm

Harmonizing standards (across regulations, certifications) for PGHD is a high priority, including developing minimum data sets and semantic interoperability across current modalities (e.g. EMRs, PHRs) as well as new mobile and virtual health apps. Several efforts are in play, e.g. the MOHR project, eQueri. Of concern with the rapid proliferation of mobile apps, we are already defining healthy behaviors, such as sleep, risky drinking, eating habits, societal determinants of health, in different ways. See current work underway, Estabrooks, Paul A, et.al., “Harmonized patient-reported data elements in the electronic health record: supporting meaningful use by primary care action on health behaviors and key psychosocial factors, J Am Med Inform Assoc 2012;19:575-582 doi:10.1136/amiajnl-2011-000576

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

    http://planningroom.org/healthit/issue-posts/pghd/#1

    Use these buttons to endorse, share, or reply to the preceding comment by Moderator.
April 25, 2013 3:19 pm

As new tools emerge supporting consumers to enter, maintain, share and update their PGHD, consumers should have rights to carry mobile, portable granular consent for determining which categories of information they are willing to share, at different points in time, across different care settings,with defined care team members. Audit tools should be in place, to provider consumers, the level of information desired, similar to current credit reporting tools, whereby consumers can see who has Viewed, Downloaded and Transmitted their PGHD.

Use these buttons to endorse, share, or reply to the preceding comment by susanchull.
April 26, 2013 8:55 pm

I’d like to know how the government plans to regulate PGHD without interfering with market forces. This seems like a delicate balance to deal with.

Use these buttons to endorse, share, or reply to the preceding comment by doctormd1985.
May 7, 2013 11:26 am

One of the most powerful ways that PGHD can support improved care is by promoting the patient’s ability to oversee the quality of their records. In fact, as more data is automatically flowing into a record, there will be more data to check, some of it questionable, and less time on the part of the provider. Importantly, the patient and/or their family can help with quality control – while also filling in gaps in the record. For instance, a parent can review and manage a child’s health record through a patient portal that allows them to identify missing information that could impact the child’s care, rectify any errors, and use the data to populate consistent information across family records and applications.

Use these buttons to endorse, share, or reply to the preceding comment by bmorrow.
May 7, 2013 11:28 am

• The federal government should establish standards and requirements to promote the inclusion of an immutable audit trail that includes read, write, edit, and download tracking in electronic records. In order for PGHD to be trusted and used by providers, it must be easily identifiable – and, they must know that they can rely on the information they put into the record being there when they return to use it. So, it is important that patient generated corrections and/or additions to the material input by a provider be visible along side the original information from the provider and that a standardized process exist for accepting the corrections.

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

(Q#1) Patient-generated health data engage patients and their family caregivers as sources of information and positions them as equal partners with providers in their care. Providing patients with an ability to offer amendments to their health record or reconcile competing information online is one method of engagement, as patients are often the first to identify errors in their own records.

It is important for ONC to ensure that EHRs are capable of integrating PGHD in the areas that are most valuable to providers and patients. These areas could include depression screening, functional status, and much more. Making the information usable by and useful for providers is essential.

Secure messaging is another important source of patient-generated data. Allowing secure messages sent… more »

…and received by a family member or other caregiver approved by the patient is advisable, and would reinforce their essential role as members of the care team. We also urge ONC to begin 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. « less
Use these buttons to endorse, share, or reply to the preceding comment by national partnership for women families.

(Q#2) Providers should clearly explain to patients and their families and other personal caregivers the value of PGHD collection and submission to the patient’s health and health care. (How will availability of PGHD enhance a patient’s quality of life or help with a specific health condition? How will PGHD help a patient’s providers and their subsequent treatment recommendations?) Providers should also have a process in place for providing feedback to patients regarding PGHD they have provided.

Use these buttons to endorse, share, or reply to the preceding comment by national partnership for women families.

(Q#3) The kinds of information that consumers believe have highest value for their providers to know, but are not limited to:
-Goals for care and wellness
-Medication allergies and non-tolerated medications (i.e., those which in the past have caused negative side effects for the individual), including over-the-counter drugs and herbal supplements
-Family (or other personal) caregiver status (using DECAF ) and additional professional care team member name(s), contact information, and role(s)
-Family history
-Functional limitations, functional status, and/or Activities of Daily Living info
-Supports and services necessary for independent living
-Patient values and preferences for care (e.g., advance directives, no blood products, etc.)
-Patient experience
-Behavioral and mental health… more »

…history and status, including depression and pain scales
-Identification of problems or concerns from the patient’s perspective
-Psycho-social information, such as family support, caregiver limitations, financial constraints, living situation, independent living skills, and activation level
-Data recorded by patient for monitoring of progress toward patient goals
-Risk factors indicated by structured surveys (such as health risk assessments)

(Comments submitted by the Consumer Partnership for eHealth to the HIT Policy Committee in response to the Meaningful Use Stage 3 Request for Comment, dated January 14, 2013.) « less

Use these buttons to endorse, share, or reply to the preceding comment by national partnership for women families.

(Q#2) At its heart, the use and integration of PGHD is fundamentally tied to the health care system’s view of patients as passive recipients of care, rather than essential partners with information and the ability to take actions that only they can. Focusing PGHD efforts on collecting data that is high-value for both providers and patients/families will help change this viewpoint. Once providers have experience with the benefits of PGHD, it is likely to continue.

We underscore the importance of patient identity-proofing and information authentication in the shift toward patient-generated information. ONC should prioritize dissemination of the newly adopted best practices for identity proofing and authentication for private and secure use of patient portals, developed by the Privacy and Security Tiger Team.

Use these buttons to endorse, share, or reply to the preceding comment by national partnership for women families.