Filling the patient–provider knowledge gap: a patient advocate to address asthma care and self-management barriers

Abstract

Introduction:

In an ongoing study, a new clinical role adapted from a patient navigator called the patient advocate (PA) met with patients before medical visits, attended appointments and afterwards reviewed provider instructions. This qualitative analysis examines the perspectives of PAs and providers regarding their experiences with patients to understand how a PA can help patients and providers achieve better asthma control.

Methods:

PAs recorded journal entries about their experiences with patients. Provider focus groups and interviews were conducted by researchers and transcribed. Analysis was based on the Grounded Theory approach for qualitative research, using open and then focused coding. Two researchers independently coded these sources until intercoder agreement was achieved.

Results:

Upon review of 31 journal entries on PA experiences with 24 patients and transcripts from 2 provider focus groups and 12 provider interviews, 5 themes emerged surrounding asthma care and self-management: medication adherence, follow-up, communication, social determinants of health and time. While patients shared with PAs specific socioeconomic barriers to medication adherence and follow-up, providers often did not know about these problems and cited barriers to communication. Time restrictions on medical visits further limited communication.

Conclusions:

Perspectives reported here illustrate a gap in knowledge and understanding between patients and providers. The PA’s unique relationship with patients and presence inside and outside of medical visits allowed them to learn contextual patient information unknown to providers. PAs and providers cited numerous ways PAs can help to improve patient–provider mutual understanding.

Introduction

Asthma disproportionately affects certain demographic groups, including Black and Puerto Rican populations and persons with a family income below the poverty level. Additionally, adults are more likely than children to die from asthma [1,2]. However, few asthma interventions have targeted low-income, Black and Puerto Rican adults [3–6]. The National Institute of Medicine found that health disparities occur and subsequently must be addressed at two levels: the operation of health systems/practices and patient–provider interactions [7]. To address disparities at these two levels, Harold P. Freeman, M.D. introduced the “patient navigator” concept specifically for low-income cancer patients living in Harlem to overcome barriers to early diagnosis and treatment [8–10].

In an ongoing study, we adapted a patient navigator called a patient advocate (PA) to address provider–patient communication barriers in adults with uncontrolled asthma from low-income, urban neighborhoods with large Black and Puerto Rican populations [11]. PAs help patients prepare for medical visits, attend medical visits with patients, review provider instructions, perform check-in calls and assist with other health system navigation tasks. In this role, PAs have the opportunity to observe and learn about patient–provider relationships and the patient experience, as they are present with patients both inside and outside of medical visits. Thus, the PA perspective can offer a unique illustration of the patient experience.

For this qualitative study, we analyzed PA and provider perspectives, obtained through journal entries, focus groups and interviews, regarding their experiences with the PA program to evaluate how a PA can help patients and providers achieve better control of asthma.

Methods

An overview of the HAP2 study

This qualitative study was conducted within the context of a larger clinical randomized-controlled trial: the ongoing Helping Asthma Patients 2 (HAP2) Study [11]. HAP2 investigates whether a PA intervention is associated with improved asthma control and other asthma-related health outcomes for adults with moderate to severe asthma. Patient participants were randomized 1:1 to the PA intervention or usual care. The intervention was administered over a 6-month period, and data collection was performed with all participants five times over the course of 1 year. Written informed consent was obtained from all participants. The University of Pennsylvania Institutional Review Board granted ethical clearance to the protocol. The study is registered at ClinicalTrials.gov (NCT01972308).

Participants

Patient advocates

PAs are recent college graduates with an interest in healthcare careers, research experience and working with patients. At least two PAs are fluent in Spanish, and Spanish-speaking patients were matched with a Spanish-speaking PA.

Providers

Providers were recruited to talk about their experiences with the PA intervention. Providers who had at least one patient visit where a PA was present were eligible to participate. Providers were contacted by email and were asked to participate in one of two focus groups or, if unavailable at the times offered, a one-on-one interview that could be completed at their convenience. All providers gave verbal informed consent to participate.

Data sources

Journal entries

PAs were asked to write journal entries about any notable experiences with patients, particularly those that may be helpful in understanding a patient’s medical or health situation. It was left up to the PAs to decide which experiences they would record. These entries were kept open-ended to allow for a broad range of topics and the journal was kept on a secure drive accessible only to the study team.

Focus groups

We prioritized a focus group approach for providers, as this allows expression of individual ideas and group synthesis [12]. Focus groups were 2 h in length, and were led by a RIVA Institute-trained moderator with extensive experience in focus group moderation [13]. The moderator followed a guide that contained questions regarding providers’ experiences with the PA, the impact of the PA on patient interaction, providers’ understanding of the PA’s role, suggestions for future PA roles and how to show value of the PA to patients and providers (See Appendix for moderator guide). The moderator used probes when appropriate to elicit further information from providers. While individuals’ responses in focus groups may be influenced by social pressure, moderator techniques limited such pressure and also ensured the discussion was not dominated by a single point of view. A note-taker was present during focus groups and recorded and transcribed the sessions.

One-on-one interviews

Although our preferred method for obtaining provider feedback was focus groups, due to the demanding nature of their occupation, many providers were not available during the scheduled focus group times. Because we valued the perspectives of an array of providers, we chose to also offer one-on-one interviews that could be completed at the provider’s convenience. Interviews were 30 min in length, and were conducted by phone. The interviewers were trained by the focus group moderator to conduct qualitative interviews, and all had experience in conducting semi-structured interviews. The interviewers followed the same moderator guide that was used for focus groups. With permission of the provider, interviews were recorded and transcribed by the interviewer.

Analysis

Analysis was based on the Grounded Theory approach for qualitative research, which involves systematic open and then focused coding to identify common concepts and categories which may generate a new theory [14]. A researcher trained in qualitative methods for coding and analyzing data reviewed journal entries and transcripts of focus groups and interviews and identified topics that were commonly mentioned. These were used to create a codebook (Table 1). The researcher coded quotes from all three data sources based on the codebook. A second researcher also trained in qualitative methods independently coded the quotes, and the two researchers reviewed and revised the codes until intercoder agreement was achieved [15]. Common themes emerged regarding PA and provider perceptions and experiences within the context of the PA program. The terms used to identify these themes were based on phrases commonly used by PAs and providers (e.g. follow-up) and concepts with accepted definitions in the literature (e.g. social determinants of health: the conditions where people live, learn, work and play, affecting health outcomes) [16]. Although themes were organized into discrete categories, themes were often connected or overlapped, and PAs and providers sometimes addressed multiple themes in the same thought. For example, for many patients, follow-up was connected to social determinants of health, and problems that arose with medication adherence were linked to patient–provider communication.

Table 1.

Codes, definitions, sub-codes with their sources used in the codebook.

Code	Definition	Sub-code
Medication adherence	Patient’s ability to take medications in the manner that the medication was prescribed	Compliance; ICS; Insurance; Cost; Prescription; Refill; Copay; Beliefs
Follow-up	Degree to which the patient follows nonmedication related provider instructions outside of a medical visit; degree to which the provider believes these instructions are followed	Patient engagement
Communication	Exchange of information between the patient and provider; ability of the provider and/or patient to convey his or her message effectively	Language barrier; Provider-Patient relationship
Social Determinants of Health	“Conditions in the places where people live, learn, work and play that affect a wide range of health risks and outcomes” [16]	Environment; Housing; Transportation; Caregiving; Support system; Employment; Education; Family
Time	Time the provider spends with the patient; time the patient spends waiting to see the provider; time the provider has to complete tasks	Busy; Wait
Usefulness of PA	Degree to which the provider or patient benefit from PA or believe that the PA could be helpful

Results

There were 5 PAs; 1 Black/African American, 2 Hispanic/Latina, 1 Asian and 1 White. All were women ranging in age from 23 to 30. PAs completed 31 journal entries about their experiences with patients out of 172 encounters (18%). Out of 99 patients with at least 1 PA visit, 24 patient participants were discussed in journal entries (24%). These patient participants were mostly female, African American and low-income, with at least one comorbidity and a high rate of emergency department and hospital utilization (Table 2). Table 3 presents characteristics of provider participants. Of 18 providers, the majority were non-Hispanic white and most worked in specialty allergy or pulmonary practices. On average, providers had been in practice more than 10 years (range 2–30). Two focus groups took place with a total of 6 providers (3 providers in each focus group) and 12 one-on-one provider interviews were conducted. Major patterns in provider responses were similar in both the focus groups and interviews. After analyzing these data, common themes emerged from all three sources surrounding patient care and asthma self-management. These themes were medication adherence, follow-up, communication, social determinants of health and time.

Table 2.

Characteristics of patients in PA blog entries (n = 24).

Agea	48 (30, 93)
Female	20 (83%)
Race/ethnicity
Non-Hispanic Black/African American	16 (67%)
Non-Hispanic White	4 (17%)
Hispanic/Latino	2 (8%)
Other	2 (8%)
Reading comprehensiona,b	34 (8, 36)
Numeracya,c	2 (0, 4)
High-school graduate	20 (83%)
Household income < $30,000/year	16 (67%)
Asthma severity
FEV1 percent predicteda	71% (16%, 94%)
# With at least one Emergency Department visit for asthma in past year	13 (54%)
# Hospitalized at least once in past year for asthma	9 (38%)
Comorbidities
Hypertension	12 (50%)
Diabetes	9 (38%)
BMIa	32 (25, 66)

^aMean (minimum, maximum).

^bShort test of functional health literacy in adults range 0–36, with score>23 adequate.

^cAsthma Numeracy Questionnaire, range 0–4.

FEV₁: Forced expiratory volume in 1 s.

BMI: Body Mass Index.

Table 3.

Characteristics of provider participants (n = 18).

Agea	51 (33, 75)
Female	10 (56%)
Race
Black/African American	2 (11%)
White	14 (78%)
Asian	1 (5.5%)
Other	1 (5.5%)
Ethnicity: Hispanic/Latino	0
Type of Practice
Primary care	6 (33%)
Specialty	12 (67%)
Years in practicea	16 (2, 30)

^aMean (minimum, maximum).

Medication adherence

PAs reported instances of patients experiencing difficulty affording medications, which subsequently impacted their medication adherence:

[The patient] expressed to her doctor that she was unable to obtain her inhaler because she could not afford it. She has health insurance but no prescription coverage and already pays for all of her other medications out of pocket. She admitted that she sometimes uses her daughter’s even though she is prescribed a different asthma medication.

–PA

PAs saw that some patients had preconceived beliefs or misconceptions regarding their medications that made medication adherence less likely:

[The provider] asked if [the patient] was taking her ICS [inhaled corticosteroid] and she answered about three times a week. When asked why not daily she replied because she did not want to gain weight.

–PA

PAs also witnessed logistical issues impeding medication adherence:

The patient is a veteran who sees a doctor in an academic health center for her asthma but gets her prescriptions filled at the VA. She had not taken her ICS in a few days because she needed a refill. In order to do so, she had to get a paper prescription from her asthma doctor and bring it to the VA. She said this makes things difficult because she is a crossing guard and has to be at work in the morning and afternoon, and is also a new mother. The provider also said if what he prescribed was not covered by the VA, the patient would have to come back to pick up another prescription.

–PA

Providers identified medication nonadherence as a problem among their patients. Similar to PAs, providers identified medication costs or insurance problems as barriers to adherence:

I say I want to start you on an ICS and I write you a prescription and tell you a little about it and then it’s out of my hands and I don’t know what happens. Half the time the patient goes to the pharmacy and the medication is $250 a month and the patients says he’ll come back when he can afford it, and then he goes 3 months without the medication.

–Provider (Specialist)

However, some providers believed that patients are not always honest about taking their medications:

A lot of providers ask if there are problems with their medications. The patient says no but that doesn’t mean they’re taking them. Patients want to please us so they often tell us what we want to hear.

–Provider (Primary Care)

Follow-up

PAs reported cases of patients forgetting to follow provider instructions after medical visits:

The patient had high blood sugar at the time of the appointment and the doctor reminded her that at her previous appointment, the doctor wanted her to measure her blood sugar every day and bring in her glucometer to review her readings. The patient did not remember this nor had she been checking her sugar levels unless she felt symptoms like blurry vision.

– PA

Additionally, PAs found that patient beliefs sometimes conflicted with provider follow-up instructions:

The patient came in for a follow up however he had not gotten his chest x-rays done nor had he attended his pulmonary appointment or the lymphedema clinic. He told the doctor that he had not seen the pulmonologist because the last time he went he was not breathing right and all the tests came back normal, so he feels like he’s going for nothing again.

–PA

Providers often did not know whether patients obtained recommended lab tests or procedures, and explained that when patients did not follow up with these recommendations, it could hinder their progress:

I have a lot of patients who I send out for tests and they come back and haven’t done them and we’re at the same place we were before because they didn’t do anything I recommended.

–Provider (Specialist)

Providers also acknowledge that patients often forget or are unable to attend follow-up appointments:

A lot of times they don’t show and after a couple of no shows, they aren’t allowed to come back. I think a lot of times it’s unintentional – they forget they have an appointment and can’t get a ride there.

–Provider (Primary Care)

Communication

PAs found instances of patient–provider miscommunication or misunderstanding:

The provider asked the patient why she was not taking her medication despite the prescription being up to date. The patient explained that her pharmacy did not dispense individual prescriptions of the ICS, and insisted she get 3 refills at once. However, she was unable to afford copays for 3 prescriptions at once. The provider did not seem to understand the patient and repeated that it would be cheaper to buy 3 refills at once.

–PA

PAs witnessed language barriers impeding communication between patients and their providers:

The patient, an older Spanish-speaking gentleman, was scheduled to see his regular doctor, but a different provider entered the room, introducing herself and saying that she would be seeing him instead. She was speaking in Spanish but was not fluent. After, when I sat down to do teach-back with the patient, it was apparent he had missed a lot of the doctor’s instructions. He certainly benefited from teach-back, but the amount of information he missed was concerning.

–PA

Providers expressed worry that patients may be afraid to be honest with providers about their symptoms:

I think a lot of patients are afraid when things aren’t going well because they think they’re going to be judged.

–Provider (Specialist)

Providers were also concerned that patients don’t always communicate problems they are experiencing outside of medical visits:

A lot of times patients will wait until their appointment even if they’re having a problem and I often find myself saying “why didn’t you call?” and they’ll say, “well I knew I had an appointment in a few weeks,” but if we knew you had this problem we maybe could have done something and prevented you from ending up in the hospital.

–Provider (Primary Care)

Providers reported being unsure whether they explained medical instructions to their patients at the appropriate literacy level or whether patients understood everything they said during a visit:

We’ve all been told in all those doctoring classes that what patients hear is “bla bla cancer … bla bla,” or whatever it is. They don’t hear a lot of that stuff you try to tell them. You think you’re speaking to them at the right level but regardless, most of the time you’re throwing information at them and they’re not hearing it.

–Provider (Specialist)

Additionally, providers reported patients forgetting to bring up questions or concerns during a visit which may indicate a lack of preparation for the visit:

When I ask, “what brings you in today?” They say: “because you told me to come back,” or they’ll say “I’m here for a visit’ but then end up calling 2 days later saying ‘Oh my God! I forgot to tell you I need a referral for this.’”

–Provider (Primary Care)

Social determinants of health

PAs reported many instances of patients experiencing barriers to health management due to social determinants of health such as suboptimal housing, caring for a sick loved one or having a close family member in jail:

The patient stated that her current residence is full of mold.

–PA

The patient’s mother had a stroke and she has been taking care of her. She complained that her siblings have not been of any help. She talked to me about the issues she was dealing with as she tried to take care of her mother and herself (she has many other illnesses in addition to asthma). We also talked about her husband who has been in jail for the past four years.

–PA

Patients volunteered most of this information to PAs during encounters outside the context of a medical visit. While PAs learned about the specific social determinants affecting patients, providers alluded to these social determinants in vaguer terms such as “barriers to care,” “a lot going on in their environment” or “influence from home.” Providers observed that patients often do not share this sort of information with them during medical visits:

I was thinking about all of my patients with moderate to severe asthma, and the ones that are very difficult to control I think have things going on in their environment and it takes a long time to discover that because often they’re ashamed or don’t realize that it’s relevant to their symptoms.

–Provider (Specialist)

Time

PAs documented instances of patients having long wait times to see their provider, leading to diminished quality of teach-back, as patients were often exhausted or hurrying to leave:

The patient had an 8AM appointment. She always requests the first appointment of the day so that she does not have to wait a long time to see the provider. We ended up waiting an hour. The appointment itself took an hour and 45 min, as the provider entered detailed notes about all of the patient’s medical conditions for another hospital where she was being evaluated for a heart transplant. When we did teach back, the patient did not seem engaged and I felt she was just trying to rush through it. This is understandable considering we spent almost 3 h waiting for and seeing the provider and she was likely exhausted. I myself felt exhausted.

–PA

Due to busy clinic schedules, providers reported not having enough time to complete important patient-related tasks, such as medication reconciliation or teaching proper inhaler techniques:

In an ideal world when we do medication reconciliation we’re supposed to be doing it with every medication and obviously it’s helpful to know what medications a patient is on for interaction purposes, but we barely have time to reconcile the asthma medications.

–Provider (Specialist)

Discussion

Through analyzing PA journal entries and provider interviews and focus groups, five themes emerged surrounding patient care and asthma self-management that revealed a gap in knowledge and understanding between patients and providers. These themes were medication adherence, follow-up, communication, social determinants of health and time. Because PAs were present with patients outside of medical visits and developed a unique relationship with patients, they often learned contextual patient information not known to providers. For example, providers often did not know about specific social determinants of health or financial constraints that affected patients’ medication adherence and follow-up. Patients did not always share these sorts of problems with their providers. Providers recognized this, and feared they weren’t always communicating effectively with patients. Time constraints on medical visits could exacerbate this gap, as providers may not be able to spend as much time as they would like discussing these topics with patients.

This gap in knowledge represents a critical challenge to achieving shared understanding of patient care plans and treatment goals. If providers are unaware of the social determinants of health patients face, for example, they may fail to make important prescribing adjustments based on insurance constraints, or miss opportunities to schedule labs or imaging on the same day as a clinic appointment to alleviate patient transportation barriers. Similarly, if patients do not feel comfortable sharing barriers with providers, there is a missed opportunity for a common understanding about why appointments are missed, treatment instructions are not followed, or prescriptions are unfilled. Further, misaligned understanding of barriers may increase provider frustration and lead to provider perceptions that patients are not engaged or responsible for their health. Table 4 shows examples of ways the PA’s role may help to fill this gap in understanding between patients and providers by addressing unmet patient needs and providing patient support.

Table 4.

Examples of ways PA helped or can help fill the patient–provider knowledge gap.

Theme	Quote
Medication adherence	“A participant talked about having trouble affording his ICS copay and was considering taking fewer doses to save money. 1 suggested contacting his insurance about cheaper ways to obtain his ICS and speaking to his doctor about more affordable substitutes. He followed suggestions and learned of a cheaper mail order option.” -PA “1 reminded the participant to bring all his medications with him to the appointment as the doctor had asked at his last visit. There had been some confusion over which medications he was taking.” -PA “The provider was reviewing medications and asked the patient if she was taking her ICS. The patient said yes, when she remembers to. The provider told her that she could not skip a day- she needed to take it every day, as her asthma was currently out of control. After the visit, 1 inquired why the patient was not taking her ICS every day. She said that she works night shifts as a nurse’s assistant, and often forgets to put her ICS in her purse and ends up leaving it at home. 1 asked her what she could do to help remember, and she said she would leave it in her purse at all times. 1 also suggested she put an alarm on her phone as a reminder or make a checklist to check before leaving the house. She liked that idea and said she would give it a try.” -PA “The advocate really helped review what [medications] the patient was and was not taking and helped talk with me and the patient about it.” -Provider (Specialist)
Follow-up	“While in the waiting room after the visit and his lab work, the patient asked me to help him schedule some of his appointments because he admittedly had not done it on his own before. 1 helped him get his referral for the lung center and called to make the appointment for him.” -PA “At the end of the visit [the patient] said, ‘Please keep calling me to remind me about my appointments. 1 have a lot going on at home with the kids and 1 forget sometimes.’” -PA “My sense is that [the PA] was very helpful in making sure that [the patient] got to her appointments.” -Provider (Specialist) “Often the patients are overwhelmed with the complexity of the health care system and the amount of their own activity and involvement that is required. So having someone to help shepherd them through the process is very helpful.” -Provider (Primary Care) “We do not have a way of seeing how the patient is doing at home- it’s all self-reported. It’s nice to have somebody who is with the patient more often and could have different insight.” -Provider (Specialist)
Communication	“The patient was telling her doctor about new symptoms she had recently experienced, when she stopped mid-sentence, looked at me and said in Spanish, “What is that Spanish proverb about menopause? Tell the doctor in English so he can understand exactly how 1 feel.” During teach-back, the participant thanked me for accompanying her to the visit because she said sometimes she has difficulty expressing accurately in English how she feels to providers.” -PA “1 think the part where the advocate goes over what’s about to happen, like “What questions do you have?” “Do you understand how to take your medicines?” “Do you understand what to do if…?” that kind of stuff to prime the patient into thinking about what’s about to happen in the visit—that’s important.” -Provider (Specialist) “There was one instance where the advocate interjected in the end and confirmed if the patient had any questions— “Is everything okay?” “Do you understand this or that?”—That felt a lot better having somebody in the room that was going over things with me and the patient.” -Provider (Specialist) “1 felt a lot more confident being able to explain some aspect of their illness or their medication and knowing that because there were two people hearing it, there was the opportunity that after they left my office, they would be able to discuss it and make sure it was okay—that everyone understood what was going on.” -Provider (Specialist)
Social determinants of health	“[The patient stated] she appreciates being able to talk about herself, her health, and her asthma for the study and seemed much happier and relaxed at the end of the visit. She feels she needs more time for herself and away from the needs of her family, and she feels she is able to do so at doctor’s visits and for this study.” -PA “1 found it to be supportive and helpful especially for patients who do not have a support system or for some reason may not be able to communicate for themselves or need extra support.” -Provider (Primary Care) “It made me think more about the social determinants of health when 1 saw a patient who 1 knew was in the program which sort of then expanded it to other patients because 1 just was thinking about it more.” -Provider (Specialist)
Time	“Could they make sure ahead of time that the medication list is correct? And that the myriad of medications that aren’t correct are out of there? That is one thing that we cannot do- we don’t have the time to do it.” -Provider (Specialist) “The one piece that’s very helpful for the patient is inhaler techniques, because 1 probably don’t do that enough because of time constraints.” -Provider (Specialist) “The feedback that 1 got from patients in general was that they appreciated the extra attention and the fact that we were trying to do more with the limited amount of time the doctors have to spend with them.” -Provider (Primary Care)

Past qualitative studies have discussed perceived barriers to asthma medication adherence among patients and providers, identifying many of the same barriers we present in our analysis [17–26]. Our study, however, examines a clinical role that could help to mitigate these barriers by assisting patients with medication concerns and helping patients to carry out provider recommendations. A 2014 study describing feedback from providers and patients regarding a patient navigator intervention for patients with breast cancer in a low-income setting reflects findings similar to ours such as improved continuity of care (similar to our theme of “follow-up”), and reduced provider workload and patient waiting time (similar to our theme of “time”) due to the presence of the navigator [27]. The PA distinguishes itself from the patient navigator described above by being tailored to the specific needs of low-income, minority adults with asthma.

Our study has limitations. The analysis uses observations of the PA to illustrate patient experiences, rather than reporting the patients’ voices directly. The PA, however provides a new perspective of patient experiences and includes useful insights that may not have been captured otherwise. Additionally, provider interviews and focus groups were conducted at least 6 months after providers interacted with PAs, allowing the potential for recall bias. Because providers were interviewed by study personnel, it is also possible that their awareness of being observed could have influenced their responses (social desirability bias). While a total of 30 providers were invited to participate in focus groups and interviews, only 18 agreed to participate. It is possible that providers who declined to participate or did not respond to the invitation may have reported different perspectives (selection bias). Finally, due to the design of the parent study, we compared three separate data sources: PA journal entries, provider focus groups and provider interviews, however the same themes emerged from all three data sources, emphasizing the importance of these themes to both patients and providers.

In our study, PAs documented numerous examples of how social determinants of health affected patient medication adherence and follow-up, yet few providers expressed interest in knowing more about social determinants of health and how they affect their patients’ health. This raises the question of what providers would do with this information were PAs to share it with them, and if they are equipped to address such barriers. Future research should investigate whether providers have the communication tools to tackle conversations about social determinants of health and how this knowledge could change patient care and the patient–provider relationship.

Conclusions/key findings

The PA’s presence both inside and outside of clinic visits and their unique relationship with patients allows them to capture important information regarding patient circumstances that otherwise may not be obtained. After examining this perspective in conjunction with the provider perspective, a gap in knowledge and understanding appeared to be present between patients and providers. The PA can help to fill this gap by carrying out tasks and providing additional support to patients. Thus, PAs may fulfill a necessary and unfilled role.

Appendix: Focus group/interview guide

Section 1: Overview and experience with program

• 1.Over the past 2 years, you have had patients in practice who had a patient advocate from this program working with them. We sent you a list of patients when we invited you to participate. If you do not remember these specific patients, I would like to re-assure you that I will not be asking about specific patients and interactions. Also, I am still interested in your thoughts and opinions about possible changes to the program in the future.

  If you are aware of any of your patients’ experiences with the program or you had any interactions with the patient advocate, I would be interested in hearing about them now.

• 2.What changes, if any, did you notice in the patient and their interactions with you before the program vs. after they participated in the program?
• 3.To what extent did you have interactions with the patient advocate when you saw these patients in your practice?
• 4.How, if at all, has the patient advocate program made your job as a health care provider easier or more effective?
• 5.How, if at all, has the patient advocate program made your job as a health care provider harder or less effective?
• 6.If you were telling another provider about this program, who had not yet heard of it, what would you say?

Section 2: Evaluation of PA activities and proposed improvements

• 7.What is your understanding of the patient advocate’s responsibilities currently?
• 8.
  Here are the activities that the patient advocate currently performs before the visit:

  • Communication-related activities such as calling the patient to remind him or her of appointments or assisting the patient with preparing a list of questions and/or asthma-related problems to address with the clinician
  • Medication-related activities such as reviewing medication list or discussing any problems with obtaining, refilling, or taking medications
  • Logistical activities such as assisting the patient with forms or other documents needed for the visit
  • Organizational activities such as giving patient a binder to organize and keep appointment and medication information

  What are your thoughts about these activities?
  There has been some discussion about possibly modifying the patient advocate’s role in the future to include the following new activities before the visit:

  • Ask patients what refills they need. Facilitate preparation of a list.
  • Ask patients to bring all their medicines to their appointments
  • Ask patient for name and contact number of pharmacy where they would like prescriptions to be sent. Encourage patients to bring this to the appointment.

  What are your thoughts about these activities?
• 9.
  Here are the activities that the patient advocate currently performs during the visit:

  • PA speaks only if invited by the participant
  • Takes notes to assist with teach-back

  What are your thoughts about these activities?
  There has been some discussion about possibly modifying the patient advocate’s role in the future to include the following new activities during the visit:

  • Teach patients correct inhaler technique
  • Get practice permission to reconcile medications, check allergies, get vital signs, get spirometry
  • With practice permission, do some scribing
  • Help with referrals

  What are your thoughts about these activities?
• 10.
  Here are the activities that the patient advocate currently performs after the visit:

  • Facilitates scheduling follow-up and other recommended appointments
  • Assists with completion of any paperwork
  • Reviews instruction given to the participant at the appointment
  • If the participant has questions for the clinician after review instructions, the PA and participant complete a report of items needing clarification for the clinician or staff

  What are your thoughts about these activities?
  There has been some discussion about possibly modifying the patient advocate’s role in the future to include the following new activities after the visit:

  • Help with patient portal
  • Report to clinicians pertinent information patients tell patient advocates, but may not tell their providers
  • Follow-up with participant on any orders asked for by providersWhat are your thoughts about these activities?
• 11.
  Here are the activities that the patient advocate currently performs between the visits:

  • Calls patient and checks how the patient is feeling, general well-being, and whether the patient has sufficient medications
  • Review upcoming appointments
  • Asks whether there are new problems surrounding obtaining care or obtaining or taking medications and whether there have been ED visits or hospitalizations

  What are your thoughts about these activities?
  There has been some discussion about possibly modifying the patient advocate’s role in the future to include the following new activities between the visits:

  • Provide a report to provider to let them know what the advocate did with each patient

  What are your thoughts about these activities?
• 12.Currently patient advocates are college educated non-medical professionals with an interest in research and health-care. In the future, who should be the patient advocates?
• 13.Now I would like to know more about the ideal relationship with providers. How should the patient advocates be communicating with providers?

Section 3: Optimizing and showing value

• 14.Based on our discussion today, which patients should have access to a program like this?
• 15.To what extent would you like to be more aware of the PA program?
• 16.I would like your thoughts on the best way to show the value of this program to providers.

  What would your reaction be to the following options?

  • Tracking patients’ % of kept appointments and reporting back to providers

  • Providing a log of what information is covered in the Teach-Back sessions between the PA and the patient

  • Discussing medications in teach-back, and following up with a letter to providers if patients seem to be struggling

  • Identifying patients for providers who have English as a second language that are having difficulty in teach-back, so different solutions can be sought for better communication

  • Other ideas?

• 17.If a new report was created to capture some of these items that we just discussed, would this type of report be best by practice, or by individual clinician, or by individual patient?
• 18.Is there anything else that we did not discuss today that could improve the program for the future?
• 19.On a scale from 1 to 10, with 10 being highest, how likely would you be to recommend the program to other providers for use with their patients?