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Personal health records (PHRs) may be useful for patient self-management and participation in communication with their caregivers and health care providers. As each potential participant’s role is different, their perception of the best uses of a PHR may vary.
The perspectives of patients, caregivers, and providers were all evaluated concurrently in relation to a PHR developed for colorectal cancer (CRC) survivors.
We explored group perceptions of a CRC PHR prototype. Scenario-based testing across eight use cases, with semistructured follow-up interviews, was videotaped in a human-computer interaction laboratory with patients, caregivers, and health care providers. Providers included oncologists, gastroenterologists, and primary care physicians. Discrete observations underwent grounded theory visual affinity analysis to identify emergent themes.
Observations fell into three major themes: the network (who should be granted access to the PHR by the patient), functions (helpful activities the PHR enabled), and implementation (how to adopt the PHR into workflow). Patients wanted physician access to their PHR, as well as family member access, especially when they lived at a distance. All groups noted the added value of linking the PHR to an electronic health record, self-tracking, self-management, and secure messaging. Patients and caregivers also saw information in the PHR as a useful memory tool given their visits to multiple doctors. Providers had reservations about patients viewing raw data, which they were not prepared to interpret or might be inaccurate; patients and caregivers did not express any reservations about having access to more information. Patients saw PHR communication functions as a potential tool for relationship building. Patients and caregivers valued the journal as a tool for reflection and delivery of emotional support. Providers felt the PHR would facilitate patient-physician communication but worried that sharing journal access would make the doctor-patient relationship less professional and had reservations about the time burden of reviewing. Strategies suggested for efficient adoption into workflow included team delegation. Establishment of parameters for patient uses and provider responses was perceived as good standard practice.
PHR perceptions differed by role, with providers seeing the PHR as informational, while patients and caregivers viewed the tool as more relational. Personal health records should be linked to electronic health records for ease of use. Tailoring access, content, and implementation of the PHR is essential. Technology changes have the potential to change the nature of the patient-physician relationship. Patients and providers should establish shared expectations about the optimal use of the PHR and explore how emerging patient-centered technologies can be successfully implemented in modern medical practice to improve the relational quality of care.
Personal Health Records (PHRs) have grown in popularity and functionality over time. PHRs are grounded in the idea that patients can improve continuity of care by transporting copies of their records from doctor to doctor. Originally, the term “PHR” stood for “patient-held records” and were paper-based systems [
In the United States, patients with chronic disease represented the first target populations for PHRs [
The patient is arguably the key stakeholder, or user, in PHR design. Nonetheless, the proliferation of both synchronous and asynchronous methods of communication has expanded the scope of stakeholders to include both caregivers and health care providers. To create the most effective PHR, the design process needs to account for the needs of all potential stakeholders. Prior studies have examined the perspectives of each stakeholder group individually or focused upon combinations of providers [
Our key study question was what are the areas of agreement and disagreement among patients, caregivers, and providers with respect to the benefits and appropriate uses of a PHR. Across stakeholders, we explored several questions, including “Who should be provided access to, share information, and communicate with the PHR?” and “What type of patient-generated information should be incorporated into the PHR?” Finally, we asked how the PHR impacts workflow and what best practices may guide the future design and implementation of PHRs for patients with cancer.
Four to six participants were recruited from each role group (patient, provider, and caregiver) on the basis of a previous study by Nielsen et al [
The initial, web-based CRC PHR prototype was created by a design team of clinical investigators and software developers. The functions of this prototype were informed by the IOM report on Cancer Survivorship [
The prototype used a tabbed browser format created with open-source software, the OpenMRS medical record system platform [
Functions of the personal health record of colorectal cancer survivors.
Tab | Functions |
My History | Allows review of cancer diagnosis and treatment, including specific type of surgery and adjuvant therapy (chemotherapy, and radiotherapy) |
My Follow-up Care | Two tables: a table with recommended surveillance tests based on initial diagnosis and a table of actual tests performed (date, test, and result) |
Side Effects | Tailored compendium of possible side effects of treatment and initial, straightforward self-management steps |
Communities | Web-based links to cancer information resources and cancer survivor support groups |
Relationships | Patients can share access to their personal health records with a set of role-based individuals (provider, caregiver, etc): relationship function enables tiered access to personal (My Mail and My Journal), medical (My History, My Follow-up Care, and Side Effects) or all components of their personal health record |
My Mail | Client-based email application enabling secure message exchange |
My Journal | Searchable, dated electronic journal, with an ability for in-line comments or responses by individuals to whom a Relationship has been granted |
Prototype screenshot created with open-source software—the OpenMRS medical record system platform.
Using the final PHR version, the participants all completed an individual session in the RVAMC human-computer interaction laboratory. Each session lasted 1 hour and was conducted by a member of the study team with a background in human factors engineering. None of the participants were familiar with the PHR prior to enrollment, nor was any type of tutorial provided before use so as to avoid bias on the basis of user experience, as well as assess the usability or intuitiveness of the interface. An interview guide was developed with expert clinical input from primary care (2) and subspecialty (1) providers, as well as scientific input from individuals with training backgrounds in human factors engineering (1 PhD and 2 Masters). At the outset of each session, all participants underwent the same semistructured interview, including questions concerning experience and expertise with technology. With content tailored to their role (cancer survivor, caregiver, or provider), participants were then given use-case scenarios to perform using the PHR (
Use-case testing scenario, with an example of a colorectal cancer survivor.
Task | Description |
1A | You recall that your doctor (Dr. Carter) wishes to know if you can grant him access to the electronic tool so he can view all of the information recorded there himself. He tells you to use the email: |
1B | You decide you want to grant your spouse access to this electronic tool so she can view all of the information within it herself. Your spouse’s email: |
2A | Dr. Carter performed a colonoscopy on January 8, 2020, and found an abnormality, so your doctor has asked you to return in six months. Please record this information using the tool. |
2B | After completing the last task, check to see when your next colonoscopy test will be and write your answer in the blank provided: Date of next colonoscopy test:_____________ |
3A | After your doctor reviews your list of past treatments through this electronic tool, your doctor informs you of a mistake in the records in the electronic cancer toolkit. You were recorded as having been treated with Xeloda, but in reality you were treated with Erbitux. Use the system to update this piece of information. |
3B | You want to share the radiation therapy you’ve received with your primary care doctor. Because your doctor cannot gain access to the toolkit, please write all the radiation treatment you’ve received in the spaces provided. |
4 | After updating your past treatment, please use the system to notify (via email) Greg Armstrong (Lance’s Caregiver), whose email address is |
5 | Use the system to record a personal experience involving what it’s like to live with cancer. Please use this opportunity to express yourself, and please entitle it: “My Cancer Experience.” |
For each role-based participant group, observations were analyzed using a grounded theory approach to determine the requirements for a CRC PHR and functions prioritized by each group. Two investigators, one of whom was not involved in the original interviews, performed the coding and analysis. The videotapes were broken into single, verbal or non-verbal, observations. The observations were recorded chronologically at the point in the session when they were collected and then grouped by participant role. Data analysis was inductive using the method of constant comparison, an iterative process consisting of an open and focused coding phase [
All 6 patients were male, with an average age of 62.2 years (range 54-72 years); 2 of 6 (33%) were African American. Four caregiver spouses were recruited; all were women and half were African American. Of the health care providers, 4 of 7 (57%) were female, 5 (71%) were White, and 2 (29%) were Asian American. Overall, most patients would recommend the use of the PHR to other patients. Patient, caregiver, and provider observations could be grouped into three major themes: the network, its functions, and implementation. The “network” encompassed those who should be granted access to the PHR by the patient, “functions” comprised the helpful activities which the PHR enabled, and “implementation” included how best to implement the PHR into workflow and communication. These themes interrelate dynamically; for example, the types of individuals included in the network (provider, caregiver, or patient) may influence the range of possible uses.
During review, six additional themes emerged within these overarching themes: Network (Access Privileges and Communication), Functions (Self-tracking and Self-management; Journal (Reflection and Communication), and Implementation (Workflow and Future Enhancements).
The PHR allowed only the patient the ability to grant access to others; many permutations in who should be granted access were observed. All patients wanted physician access to their PHR. Most patients wanted family members to have access to the PHR; when family member access was granted, their spouse was always included. Access for family members was guided by relational closeness, and how important individual family members were to the patient’s care. Without being prompted, 2 different patients suggested that researchers should also be provided access so as to create knowledge in the process of sharing information, expressing a sense of altruism: “probably use if I thought it would help other people.”
Another patient suggested a doctor-only network, established without individual patient permissions. Patients suggested a model wherein medical personnel would have one-time access to PHR data in an emergency: “In the past, I had an uncle who died of diabetes and no one knew it but his wife, and she was out of town; he went to the emergency room and they gave him the wrong medicine.”
Patients and caregivers saw the information recorded in the PHR as a useful memory tool because they “can’t remember everything.” One caregiver noted that this would be “great for keeping up with what is happening with 10 doctors.” All stakeholder groups observed that the PHR would enable the patient and caregivers to record and track future testing, leading them to be “more engaged.”
Patients and providers saw potential in the PHR for self-management. One patient said, “It would be nice to be able to keep up with how your treatment’s going, kind of knowing if you’re…getting better…A lot of times when you have cancer you always have a question mark over your head – where am I?” One provider discussed how the PHR could stimulate patients to ask questions. A caregiver noted that information from the PHR could be printed and brought to doctor appointments to address key issues. Patients and providers saw the potential for the PHR to track symptoms and perhaps deliver self-care approaches. Given the network of relationships that the PHR facilitated, patients saw an opportunity for collective self-management of their problems, facilitating help from caregivers.
Providers had reservations about patients viewing “raw data.” They felt that patients were not prepared to interpret the data, which led to confusion and anxiety, and that inaccurate data in the record might upset patients. Patients and caregivers did not raise any downsides to having access to more information. Regarding inaccurate information in the PHR, patients expressed greater interest in how errors might be corrected rather than who would be to blame. None of the patients raised concerns about privacy or security of the PHR, but caregivers and providers expressed such concerns.
Patients viewed the journal as a tool for reflection where they could record their personal thoughts, emotions, symptoms, and “vent” about frustrations. If shared, information recorded in the journal was seen as potentially reducing a sense of isolation: “Cancer is kind of a lonely illness to have; they can talk back and forth and share their experience of what they are going through and what medicines are working for them.” Patients and caregivers saw the PHR as providing a way for others, including the health care provider, to better “understand the patient’s issues”.
In addition to self-reflection, patients and caregivers viewed the journal as a tool for communication and a way for patients to receive support from others. The “comments” section in the journal appeared to them to make bidirectional communication possible between patients and providers. For more stoic individuals, the journal was seen as offering a tool to communicate in written form what they might have trouble expressing verbally. One caregiver noted that a patient may withhold information about prognosis to “protect” family members, and the journal may enable greater sharing of information: “helps with hope if we know what to expect.” Another caregiver suggested more multimedia resources in the PHR; for example, “songs or movies” that could help start conversations.
Two providers shared the view that the PHR would facilitate patient-physician communication, allow “sympathy,” and help the physician understand the patient “holistically.” However, another provider worried that sharing journal access would make the doctor-patient relationship “less professional.” Most providers were concerned about the time burden of processing a large amount of unstructured information. Potential malpractice liability owing to the provider having journal access was also raised, although a provider commented “you can’t spend life worrying about lawsuits.”
All stakeholder groups would prefer the PHR to be tethered to the patient’s electronic health record (EHR), and did not see themselves as performing manual data entry. One participant indicated concern that only young or “techie” patients would be able to reliably use the PHR. For certain types of data, providers did not trust the accuracy or completeness of patient-entered information, although one provider stated that “patients should record their own values so they will be more involved.”
The time burden of accessing the PHR was a common concern among providers. Strategies suggested for efficient adoption into workflow included nurse delegation; for example, email could be used for nurse-directed symptom management. Each stakeholder group believed the PHR should be well-integrated with other technologies to avoid creating multiple locations to access electronic health records or check email. PHR training was also perceived as necessary. Establishing parameters for patient uses and provider responses was considered good standard practice.
For email, providers were again concerned about the time burden but recognized that email could be both a “responsive” and “efficient” tool (eg, sending test results) for asynchronous communication. Patients expressed sensitivity to the time burdens of providers without prompting from the interviewer, suggesting that email may reduce the number of telephone calls, and expressing the opinion that email was more likely to reach their doctors.
Most providers considered email more efficient than the journal. A few providers indicated they would read the journal, but only if directed by patient request to a specific entry. For the journal, one provider suspected patients would record too much extraneous detail, thus making real issues harder to find. Providers suggested several types of structured information patients could enter, including review of systems, symptoms, and pain scores. Organizing tools, such as the use of subject headings and natural language processing, were suggested.
Patients and caregivers were interested in several specific enhancements to the PHR. They sought more guidance in accessing support groups and information regarding complementary medicine. Patients were interested not only in disease information, but also healthy lifestyle resources, especially nutrition. More capabilities concerning medication management were suggested, particularly a list of medications and side effects attributable to each chemotherapy agent. Other desired functions were the ability to refill medications, make appointments, and carry the PHR on portable devices.
The integration of multiple stakeholder perspectives regarding the potential use of a PHR for cancer survivors was a key strength of our study. Patients, caregivers, and providers all have unique roles and offer particular insights into the PHR’s potential to meet the needs of cancer survivors. All stakeholder groups perceived the PHR to be a valuable tool and would recommend this patient-centered technology to others diagnosed with cancer. Several areas of agreement emerged across different stakeholder groups. First, the broader the network of users provided access, the better. As in other studies, a majority of patients wanted clinician access to the PHR [
Patient preference for access among individuals who were not clinicians was less universal and connected with the closeness of personal relationships and geographic proximity [
Another area of wide agreement among all stakeholder groups was the use of the PHR for information-sharing. Pragmatically, health information delivered through the PHR may increase patient recall and prompt questions at follow-up visits. By enabling patients to review their health information beforehand, and potential test recommendations, patients may be more prepared and activated [
Areas of disagreement were also noted among stakeholder groups, particularly between patients or caregivers and health care providers. Patient and caregivers both saw the value of the PHR in relationship-building. Information the patient shared about their personal cancer experience, especially through the journal function, was viewed as a way to be better understood as a whole person. Previous studies of narrative medicine suggest that patients’ written stories of how illness has affected them can help them rediscover personal identity [
The messaging function, especially to communicate with their doctor, was highly valued by patients in this and other PHR studies [
A related area of disagreement between patients and providers was the perceived value of sharing unstructured information. Patients saw the ability to construct meaning and relate personal experiences from sharing information in more qualitative forms, but only a minority of providers shared this view. Providers saw the same information as potentially inaccurate, a time burden, and source of medical liability. Structured information of all types was suggested by providers, including symptom and pain scores. Such discrete information may be more manageable for tracking and quality improvement purposes, as well as secondary research; however, the use of standardized instruments reduces the expressive content of the information and the patient’s ability to articulate their unique circumstances.
Our findings deliver several key messages to be considered in the future design and implementation of patient-centered technologies.
In free-standing PHRs, data entry would need to be performed by either the patient or the health care provider. Neither cancer survivors nor health care providers could see themselves as having adequate time to enter such data into the PHR. Moreover, health care providers did not have full confidence in the accuracy of patient-entered data. Based on the medical literature, their skepticism is warranted; for example, patients tend to overreport the receipt of cancer screening and underreport screening intervals [
In this and other studies, patients expressed interest in allowing emergency care providers to temporarily access the PHR [
Tailoring across multiple dimensions of the PHR is possible, including access, content, and implementation approaches. As a matter of patient-centered principle, the patient was placed in control of PHR access; cancer survivors can then choose who to invite as well as what types of information those individuals can access. This flexible design appeared to be well-received, and patients reflected thoughtfully about to whom and why they would provide access. In our study and others, patients also wanted tailored guidance in searching for high-quality disease information and local support groups [
The organizational contexts in which patients are seen, and in which PHRs will be administered, are quite heterogeneous. The US health care system has a multiplicity of practice environments, including academic and community, private and public, hospital- and office-based, and single and multispecialty groups. The structure and workflow of individual practices will play a large role in the optimal approach to implementation. Helpful guidance was suggested by our participants, including the use of support staff and best practices in the use of emails. Observations collected in multiple clinical settings would more fully inform other approaches worth consideration for dissemination.
Structured information was entered to summarize the patient’s treatment and surveillance testing, and unstructured information was communicated in the journal and messaging system. Preferences for different types of information diverged between patients and providers. To resolve these varying perspectives, negotiation may be necessary between patients and providers to strike what both view as a fair balance. Different PHR systems may be tailored over time to reflect these compromises in the types of information delivered and received.
Patients almost universally valued the participation of health care providers in the PHR system. However, providers expressed reluctance about an open-ended engagement, especially in the case of patients expressing personal feelings or experiences in unstructured formats. While technology may initially appear to be a tool to facilitate patient-physician communication, it is worth considering how new tools such as the PHR could potentially change not only the mode, but also the content and qualities of communication. Broader sharing of the cancer experience may provide the opportunity for providers to more deeply understand their patients’ identities. Further, the low adoption rate of PHRs [
This study was limited by its size, although owing to recurrent themes in the analysis, investigators believed that thematic saturation had been reached. Further, many of the main findings were consistent across different subject groups. The participant population was completely male; while males represent the strong majority of the US veteran population (>90%), female veterans should be aggressively recruited in future studies. The age distribution was also representative of patients diagnosed with colorectal cancer. Future studies should consider other patient groups and cancer types. Finally, no major EHR companies have deployed oncology patient portals that make possible the clinically tailored care delivered by the PHR tested here. Hence, we focused on general PHR issues (networking and implementation) and functions (self-management and journaling) relevant across portals. However, we believe that tailored, disease-focused PHRs have the potential to deliver greater clinical value to patients and providers; therefore, they represent a future model for technology design when the industry’s business case can better support the degree of specialization required.
PHR perceptions are role-dependent, but there is marked consensus on many aspects of PHR design among stakeholders. This suggests that a single, integrated tool can be designed to meet several identified patient needs, including self-tracking and self-management, as well as more informed and shared medical decisions. Providers have unique concerns about the increased time burden and the accuracy of patient-entered data, and more fundamentally, how web-based communication tools may change the nature of the physician’s professional role. Patients perceive these tools as a potential pathway to personal understanding that can deepen their relationships with doctors. Nonetheless, to realize this promise, patients and caregivers may need to search for and encourage health care providers to partner with them in exploring how emerging patient-centered technologies can be successfully implemented in modern medical practice to improve the relational quality of care.
colorectal cancer
electronic health record
Institute of Medicine
personal health record
Roudebush Veterans Affairs Medical Center
The study was supported in part by VA HSR&D CDA 07-016, the VA Advanced Medical Informatics Fellowship Program (Carr), and the Livestrong Foundation. The funders had no role in the study design, collection, analysis and in the interpretation of data, writing of the report, or the decision to submit the paper for publication.
None declared.