Fateme Rajabiyazdi

Charles Perin
email: 2charles.perin@city.ac.uk

Jo Vermeulen

Haley Macleod
email: hemacleo@indiana.edu

Diane Gromala
email: gromala@sfu.ca

Sheelagh Carpendale
email: sheelagh@ucalgary.ca

Differences That Matter: In-Clinic Communication Challenges

Keywords: H, 5, m, Information Interfaces and Presentation (e, g, HCI): Miscellaneous

We provide an integrated view of patients' and clinicians' perspectives on the communication challenges faced when patients present their medical issues to the clinicians. By combining the results of a literature review from both the HCI and medical literature with the results of clinician interviews explicitly about in-clinic communication issues, we are able to offer a more complete picture of these crucial in-clinic communication challenges. We discuss similarities and subtle but important differences between patients' and clinicians' perspectives. While patients and clinicians are often talking about the same issue, we found that they differ considerably in opinion and attitude. Drawing upon these subtle yet significant differences and ideas raised by the interviewed clinicians, we offer research suggestions for the design of future in-clinic communication tools.

INTRODUCTION

Extensive research has demonstrated that effective in-clinic clinician-patient communication is essential for building good relationships between clinicians and patients, as well as achieving the best results in improving people's health [START_REF] Ong | Doctor-patient communication: A review of the literature[END_REF][START_REF] Cegala | The impact of patients' participation on physicians' patient-centered communication[END_REF]. While effective clinician-patient communication positively impacts patients' lives, misunderstandings between clinicians and patients can cause substantial harm to patients, at worst, even death [START_REF] Mentis | Invisible emotion: Information and interaction in an emergency room[END_REF]. Thus, it is important to work towards the improvement of clinician-patient communication; both to provide clinicians with access to the best, most focused, and richest information about the patients' conditions and to ensure patient comprehension and perception of support [START_REF] Ong | Doctor-patient communication: A review of the literature[END_REF][START_REF] Coulter | Partnerships with patients: The pros and cons of shared clinical decision-making[END_REF][START_REF] Asan | How physician electronic health record screen sharing affects patient and doctor non-verbal communication in primary care[END_REF]. In this paper, we focus on expanding our understanding of the clinician-patient face-to-face communication challenges that occur during a day-to-day clinician-patient visit. For example, we are interested in visits in which a patient presents For example, Ni et al. [START_REF] Ni | AnatOnMe: Facilitating Doctor-patient Communication Using a Projection-based Handheld Device[END_REF] explored the use of a projectionbased handheld device for educating patients about their knee injury during an in-clinic visit. To inform the design, researchers conducted interviews with both physiotherapists and patients. Their technology, AnatOnMe, supported projecting body anatomy details on the patient's knee. AnatOnMe offered sufficient functionality for physiotherapists and they were keen to include more medical content for different injuries. Patients also found it engaging and fun to learn about their body.

Piper et al. [START_REF] Piper | Supporting medical conversations between deaf and hearing individuals with tabletop displays[END_REF] designed a tabletop display for information sharing between a deaf patient and a clinician. The researchers conducted interviews with both deaf patients and clinicians about the specific communication challenges they face. Then they designed a technology that presents visual information and supports keyboard entry from a deaf patient and speech input from the clinician. Evaluation indicated that such technologies might offer a substitute to using an interpreter (difficult due to cost, availability, and privacy) and facilitate medical interviews while maintaining patients' privacy.

To support sandtray therapy -a form of art therapy often used for young people -Hancock et al. [START_REF] Hancock | Supporting sandtray therapy on an interactive tabletop[END_REF] designed a virtual sandtray for a tabletop display to support communication between the therapists and their patients. The design of this prototype was informed by interviews with therapists and patients. The researchers found that their prototype was sufficient for therapists to gain insights about patients' psyche through their interactions with the virtual sandtray.

These examples show that technology can be a solution to some clinician-patient communication challenges when carefully designed by considering both perspectives. While promising, these technologies were designed for specific use cases. In order to facilitate the design of in-clinic communication technologies in a general context, we need to have a broader understanding of the challenges patients and clinicians face.

METHODOLOGY

Our intention is to expand our understanding of the communication challenges that occur during in-clinic visits when patients present their medical issues to clinicians. To this end, we first conducted a literature survey. We found many studies interviewing patients and considerably fewer studies interviewing clinicians. While this may be due to factors such as difficulty in obtaining interview time with clinicians, it showed that a balanced view may need more clinician input, because communication always involves both parties. Also, the clinician interviews in the literature rarely consider day-to-day in-clinic visits and tend to be focused on specific medical situations such as when a clinician needs to impart a difficult fact to a patient. To learn more about the communication challenges of day-to-day patient visits, we augmented our literature review with clinician interviews about the communication issues experienced across many in-clinic visits. The literature survey and the clinician interviews provide complementary insights. By combining these, we can offer more details about clinicianpatient communication and, in particular, discuss and contrast clinicians' and patients' perspectives.

Literature Review

We started our literature search with a broad set of keywords to collect papers that investigated the challenges patients and clinicians face when communicating during an in-clinic visit. We searched PubMed, the ACM Digital Library (DL), and IEEE Xplore for all combinations of the following keywords: "physician/clinician/doctor + patient + communication/interaction + challenge/problem/issue/difficult". This search resulted in an initial set of 2145 articles: 1781 from PubMed, 222 from ACM DL, and 142 from IEEE Xplore. We went through all the papers' abstracts and selected 312 papers that contained at least one of the search keyword combinations in their abstract.

Given our focus on day-to-day visits, we excluded articles on clinician-patient communication that happens in more extreme cases such as ICU care, surgery care, delivering bad news to patients, and end of life discussions. In addition, since we are focusing on a more general patient population, we have not included papers discussing special circumstances such as caring for patients with cognitive/physical disabilities, patients with extreme financial issues, and patients with different spirituality beliefs. We further excluded papers that only focused on the design and development of technology and have not investigated the communication requirements or challenges that patients or clinicians face. We divided these papers into four categories: patients' perspectives (22 papers); clinicians' perspectives (5 papers); both perspectives, interviews (4 papers); and both perspectives, observations (8 papers). We carefully read these papers to identify communication challenges using open coding techniques [START_REF] Strauss | Grounded theory in practice[END_REF] which resulted in 21 codes.

Clinician Interviews

To broaden the understanding of clinicians' perspectives on the communication challenges they face when communicating with their patients, we conducted semi-structured interviews with 10 clinicians. We interviewed a range of clinicians (both specialists and primary care doctors) who are directly involved with patients in understanding and diagnosing their condition, and suggesting treatments, corresponding to our focus on a day-to-day visit. Like 80% of the papers in our survey, we conducted interviews, in which we asked questions directly about communication challenges, since we are interested in the major challenges that clinicians are already aware of.

Participants. Finding physicians willing to give interview time, and with a wide variety of expertise, was a challenge. We recruited 10 clinicians (4 female, 6 male) from two different cities using snowball sampling. To maintain clinicians' requests for privacy, we do not explicitly report their length of practice but can say that we have a good spread from moderately junior to very senior clinicians. We recruited two physician pain specialists from two separate pain clinics, an established physiotherapist, a physiotherapist trainee, a neurologist, a neurology resident, and a primary care doctor, two diabetes specialists, and a chronic condition specialist.

Why a mix of clinicians? This set of clinicians provides a good range of perspectives from the clinician's point of view. Also, and importantly from our perspective, all these clinicians regularly do have day-to-day visits in their practice where they see patients in their office/clinic for diagnosis or treatment

C 1 . A N X IE T Y C 2 . F A C T S A N D E M O T IO N S C 3 . D IF F E R IN G E X P E C T A T IO N S C 5 . IN C O M P L E T E IN F O R M A T IO N C 4 . E N G A G E M E N T C 6 . IN F O R M A T IO N S O U R C E S C 7 . M E D IC A L T E R M S
STEP ET AL. [START_REF] Shields | Patient-centered communication and prognosis discussions with cancer patients[END_REF] CLAYTON AND DUDLEY [START_REF] Chung | Boundary negotiating artifacts in personal informatics: Patient-provider collaboration with patient-generated data[END_REF] SHIELDS ET AL. [START_REF] Perin | Revisiting bertin matrices: New interactions for crafting tabular visualizations[END_REF] HUDELSON ET AL. [START_REF] Greatbatch | Interpersonal communication and human-computer interaction: an examination of the use of computers in medical consultations[END_REF] OBSERVATIONS INTERVIEWS CHEN ET AL. [START_REF] Cegala | The impact of patients' participation on physicians' patient-centered communication[END_REF] UNRUH ET AL. [START_REF] Sun | Messaging to your doctors: Understanding patient-provider communications via a portal system[END_REF] AGGARWAL ET AL. [START_REF] Aggarwal | Doctor, can you see my squats?: Understanding bodily communication in video consultations for physiotherapy[END_REF] WEIBEL ET AL. [START_REF] Thorne | Hope and probability: Patient perspectives of the meaning of numerical information in cancer communication[END_REF] SADA ET AL. [START_REF] Ong | Doctor-patient communication: A review of the literature[END_REF] CLINICIANS AND PATIENTS

LITERATURE REVIEW OUR CLINICIAN INTERVIEWS

CASARETT ET AL. [START_REF] Brown | Does the use of a glossary aid patient understanding of the letters sent to their general practitioner[END_REF] CHUNG ET AL. [START_REF] Chen | Unpacking exam-room computing: Negotiating computer-use in patient-physician interactions[END_REF] HAHN [START_REF] Gorter | Doctor-patient interaction: standardized patients' reflections from inside the rheumatological office[END_REF] PATIENTS INTERVIEWS AND SURVEYS SIU [START_REF] Root | Communication barriers between older women and physicians[END_REF] THORNE ET AL. [START_REF] Strauss | Grounded theory in practice[END_REF] JULLIARD ET AL. [START_REF] Huh | Patient moderator interaction in online health communities[END_REF] BROWN ET Al. [START_REF] Broom | Virtually he@lthy: the impact of internet use on disease experience and the doctor-patient relationship[END_REF] KLITZMAN [START_REF] Jackson | Communication about symptoms in primary care: impact on patient outcomes[END_REF] MOFFAT ET AL. [START_REF] Macleod | Rare world: Towards technology for rare diseases[END_REF] THORNE ET AL. [START_REF] Sullivan | How computers can help to share understanding with patients[END_REF] JACKSON [START_REF] Hancock | Supporting sandtray therapy on an interactive tabletop[END_REF] NETTLETON ET AL. [START_REF] Matthias | The patient-provider relationship in chronic pain care: providers' perspectives[END_REF] GORTER ET AL. [START_REF] Falvo | Assessing residents' behavioral science skills: Patients' views of physician-patient interaction[END_REF] JACKSON AND KROENKE [START_REF] Hudelson | Interpreter-mediated diabetes consultations: a qualitative analysis of physician communication practices[END_REF] ABYHOLM AND HJORTDAHL [START_REF] Abyholm | Being believed is what counts. a qualitative study of experiences with the health service among patients with chronic back pain[END_REF] VAN WIERINGEN ET AL. [START_REF] Thomasma | Beyond medical paternalism and patient autonomy: A model of physician conscience for the physician-patient relationship[END_REF] ARAI AND FARROW [START_REF] Arai | Access, expectations and communication: Japanese mothers' interaction with gps in a pilot study in north/london[END_REF] CONSTANTINO ET AL. [START_REF] Clayton | Patient-centered communication during oncology follow-up visits for breast cancer survivors: content and temporal structure[END_REF] BERTAKIS ET AL. [START_REF] Attfield | Patient information needs: pre-and post-consultation[END_REF] ROOT [START_REF] Nunes | Self-care technologies in hci: Trends, tensions, and opportunities[END_REF] FALVO AND SMITH [START_REF] Constantino | Interaction between diabetic patients, their general practitioners and a hospital diabetic clinic[END_REF] LIM ET AL. [START_REF] Julliard | What latina patients don't tell their doctors: a qualitative study[END_REF] SUN ET AL. [START_REF] Spruill | The impact of perceived hypertension status on anxiety and the white coat effect[END_REF] GONZALES AND RIEK [START_REF] Crampton | Computers in the clinical encounter: a scoping review and thematic analysis[END_REF] MACLEOD ET AL. [START_REF] Lim | it just seems outside my health": How patients with chronic conditions perceive communication boundaries with providers[END_REF] VEGNI ET AL. [START_REF] Thorne | Patient real-time and 12-month retrospective perceptions of difficult communications in the cancer diagnostic period[END_REF] MATTHIAS ET AL. [START_REF] Loos | Wearable health monitors and physician-patient communication: The physician's perspective[END_REF] LOOS AND DAVIDSON [START_REF] Klitzman | patient-time" "doctor-time", and "institution-time": Perceptions and definitions of time among doctors who become patients[END_REF] CLINICIANS NI ET AL. [START_REF] Mentis | Invisible emotion: Information and interaction in an emergency room[END_REF] GIROLDI ET AL. purposes. Therefore, we did not differentiate between primary care doctors, specialists, or physiotherapists.

Procedure and Analysis. We used semi-structured interviews to let the clinicians influence the conversation and deviate from our questions. Our interview questions were general, regarding the interaction between clinicians and patients and were not related to the clinicians' field of medicine. The questions covered four main topics: 1) Clinicians' views on patients' difficulties describing their medical issues; 2) Strategies clinicians employ to facilitate communication with the patients; 3) Problems clinicians' face when presenting information to patients; and 4) Clinicians' approaches to simplify information for patients. Given their busy schedules, we conducted the interviews at the clinicians' convenience. Eight interviews took place in the clinicians' offices/clinics, one in a public place, and one via Skype. According to the consent received, interviews were either audio or video recorded. The interviews lasted 30-60 minutes depending on clinician availability and the interview process. We transcribed and analyzed the interviews using inductive qualitative methods [START_REF] Strauss | Grounded theory in practice[END_REF]. One researcher coded all the transcripts and another researcher independently coded a subset of transcripts. We then discussed, refined, and verified the codes. From this phase, we gathered 52 codes.

Relating the Literature Review to the Interviews

We coded both the selected literature and the interviews. We arrived at 21 codes from the literature and 52 from the interviews. We further split up the interview codes in two groups: 22 codes describing the challenges clinicians mentioned, and 24 codes about the strategies clinicians used to address these challenges. We kept the strategy codes separate. The remaining 6 codes were not used (see later).

To reveal the major issues from both the clinicians' and the patients' challenges, we created an affinity diagram from literature codes [START_REF] Constantino | Interaction between diabetic patients, their general practitioners and a hospital diabetic clinic[END_REF] and the interview codes regarding the challenges [START_REF] Coulter | Partnerships with patients: The pros and cons of shared clinical decision-making[END_REF]. From this process, 7 themes of challenges emerged: C1. Anxiety, C2. Facts and Emotions, C3. Differing Expectations, C4. Engagement, C5. Incomplete Information, C6. Information Sources, and C7. Medical Terms. This process is illustrated in Table 1, where columns are the 7 themes and rows are the 39 selected papers and the 10 interview participants, ordered by similarity [START_REF] Perin | Revisiting bertin matrices: New interactions for crafting tabular visualizations[END_REF]. Papers are grouped according to whether they consider patients and clinicians together, patients alone, or clinicians alone. The dark squares indicate which themes were mentioned in a paper or by a participant.

After consolidating the codes into these seven overarching themes, we were left with 6 remaining codes. These consisted of three topics: treating patients with cognitive deficits, delivering bad news to patients, and the variation between different clinicians' performance. Given our focus on communication during day-to-day visits, we excluded the above codes. We use the strategy interview codes to inform our discussion on possible methods to address the communication challenges.

COMMUNICATION CHALLENGES: PATIENTS' AND CLINICIANS' PERSPECTIVES

For each of the seven themes of challenges that we extracted (C1-C7), we use the following structure:

• For the patients' perspectives on communication challenges, we provide results from the literature review. • For the clinicians' perspectives on communication challenges, we combine the results from our interviews with the clinicians' perspectives found in the literature review. • We discuss, contrast, and identify similarities and subtle differences between both perspectives. • We present technological and non-technological strategies that clinicians currently use to address the challenge.

ANXIETY

CLINICIANS PATIENTS Notice the patient's anxiety and talk about the result of anxiety

Talk about the cause -about what they think makes them anxious Mention how a patient's anxiety leads to: forgetting details; getting lost in words, and being confused Think the environment might be the problem -the white coat, the office, the computer Table 2. Clinicians' and patients' perspectives on anxiety.

C1. Anxiety

Patients' Perspectives: From the literature review, we found that patients sometimes find it stressful to present their medical issues to clinicians. They think stress interferes with establishing a smooth communication and sharing the necessary information with their clinicians [START_REF] Nettleton | Understanding the narratives of people who live with medically unexplained illness[END_REF]. Patients say that the lack of time is one of the factors that makes them anxious. As a result, they may not be able to share some of the information they have in mind [START_REF] Julliard | What latina patients don't tell their doctors: a qualitative study[END_REF]. Patients also are not happy with the way clinicians usually structure the time. They think the waiting time to see clinicians enforces a feeling of hierarchy, causing more anxiety [START_REF] Klitzman | patient-time" "doctor-time", and "institution-time": Perceptions and definitions of time among doctors who become patients[END_REF]. Patients expressed their concerns about the physical set up of the room. For instance, the presence of computers can increase stress, especially when the display is not shared with the patients [START_REF] Chen | Unpacking exam-room computing: Negotiating computer-use in patient-physician interactions[END_REF][START_REF] Asan | How physician electronic health record screen sharing affects patient and doctor non-verbal communication in primary care[END_REF]. They are unsure what clinicians are doing behind the screen.

Clincians' Perspectives: From our interviews, we found that clinicians are aware of patients' anxiety. They expressed their concern about patients' confusion on how much and what type of information to share. Clinicians find it challenging to cut patients off when they are telling their story. They do not want to dismiss the necessary information but at the same time not all the information that patients share is necessary useful for diagnosis. The clinicians observe that patients may not know how to describe their symptoms or may get lost in trying to use the right words, resulting in extra stress on the patients.

Clinicians added that stressed patients may misremember or forget incidents related to their health: "there is that degree of information that the patient may be expected to have but does not have" (P2). This is even harder when patients are experiencing a symptom for the first time. To mitigate this problem, the clinicians offer help by providing examples or giving patients adjectives to describe their symptom. However, they are careful in suggesting descriptions of symptoms in order to avoid leading patients or giving patients the feeling that they are looking for the right answer. They are also concerned about not contributing to the patient's feeling that clinicians are dominating the interaction: "If they can't figure something [out] by themselves, you give them a bunch of suggestions, being careful not to make someone feel frustrated or someone who has got low self-esteem, you have to be careful [to not] make them feel more inadequate" (P3). Clinicians also feel that patients may think that the clinicians are not listening to them while they are looking at their computer: "The electronic medical record is the third person in the room who seems to ask for more attention than the patient" (P1). To mitigate this problem, P1 mentioned that to record a patient's history, he could use a mobile phone instead of a computer while he is talking to his patients. Since mobile phones are FACTS AND EMOTIONS CLINICIANS PATIENTS Are mainly looking for medical information Are looking for an emotional exchange Feel they often get emotional information rather than factual details Share emotions to get more attention and to make clinicians happy Table 3. Clinicians' and patients' perspectives on the impact of emotions on communication.

small and movable, patients get less distracted and clinicians can maintain a face-to-face conversation with patients.

Differences in Perspectives:

Combining the literature review with our clinician interviews, both patients and clinicians found patients' anxiety to be a problem for in-clinic communication (See Table 2). Clinicians are aware that their patients are anxious. They talk about how this anxiety affects their patients. They think that their patients' anxiety leads to forgetting details, getting lost in words, and being confused about what and how much information to share. Patients also state that they feel anxious when they visit their clinicians. However, patients do not talk about how their own anxiety might affect their behaviour. Instead, they indicate external causes for their anxiety, such as the clinical environment [START_REF] Spruill | The impact of perceived hypertension status on anxiety and the white coat effect[END_REF], clinicians wearing a white coat [START_REF] Spruill | The impact of perceived hypertension status on anxiety and the white coat effect[END_REF], and the clinicians' use of computers [START_REF] Greatbatch | How do desk-top computers affect the doctor-patient interaction[END_REF][START_REF] Greatbatch | Interpersonal communication and human-computer interaction: an examination of the use of computers in medical consultations[END_REF][START_REF] Chen | Unpacking exam-room computing: Negotiating computer-use in patient-physician interactions[END_REF].

C2. Facts and Emotions

Patients' Perspectives: In addition to medical help, patients seek the need to share their life situations with clinicians [START_REF] Sada | Primary care and communication in shared cancer care: a qualitative study[END_REF][START_REF] Thorne | Patient real-time and 12-month retrospective perceptions of difficult communications in the cancer diagnostic period[END_REF]. They do not necessary expect much to be done by their clinicians rather they just need them to listen. Patients think that they will get more attention from clinicians and that clinicians will take their conditions more seriously if they share their frustrations and emotional downs [START_REF] Chung | Boundary negotiating artifacts in personal informatics: Patient-provider collaboration with patient-generated data[END_REF]. Patients also like to share their happiness with clinicians when they have progressed in their treatment or recovery with their disease. They think the good news will make their clinicians happy [START_REF] Sun | Messaging to your doctors: Understanding patient-provider communications via a portal system[END_REF].

Clincians' Perspectives: Clinicians were aware that patients feel a need to share their emotional state with clinicians and the clinicians talked about trying to express their support for their patients to some extent [START_REF] Matthias | The patient-provider relationship in chronic pain care: providers' perspectives[END_REF][START_REF] Hahn | Physical symptoms and physician-experienced difficulty in the physician-patient relationship[END_REF]. The clinicians in our study told us that they are willing to sympathize with patients to some degree and may gain useful information from patients telling their mixed story. The clinicians note that patient are often unable to articulate their symptoms because their thoughts are disorganized. Therefore, they try to narrow down patients' thoughts into a concise format, which in some cases might be complicated for patients. P1 gives the example of Twitter as way to restrict a description since patients tend to be vague and disorganized: "Twitter forces you to really think about what you are saying cause you only have 140 characters so you are not able to include unnecessary details" (P1). Another participant, P10, encouraged her diabetes patients to email or text message their sugar level and blood pressure numbers to get advice on their insulin intake.

Differences in Perspectives: Both patients and clinicians found patients' emotions to be a problem for communication (see Table 3). Patients have a different understanding of the in-DIFFERING EXPECTATIONS CLINICIANS PATIENTS See patients who come with preconceived ideas and want quick fixes Look for the clinicians to take patients' individual needs into consideration Feel that patients should do the 'homework' they are given Look for something they understand -medication they know, instructions that make sense to them Table 4. Clinicians' and patients' perspectives on differing expectations.

formation that they need to share with clinicians. Previous studies showed that patients seek emotional support and recognition when they visit their clinicians [START_REF] Chung | Boundary negotiating artifacts in personal informatics: Patient-provider collaboration with patient-generated data[END_REF][START_REF] Sun | Messaging to your doctors: Understanding patient-provider communications via a portal system[END_REF]. Patients think clinicians' emotional reaction to their complaints will give them more trust to share their medical issues [START_REF] Abyholm | Being believed is what counts. a qualitative study of experiences with the health service among patients with chronic back pain[END_REF]. As a result, they feel more satisfied with their visit [START_REF] Shields | Patient-centered communication and prognosis discussions with cancer patients[END_REF][START_REF] Bertakis | The relationship of physician medical interview style to patient satisfaction[END_REF] when they share their emotions. However, clinicians are trained to efficiently interpret medical history and establish diagnosis, based on precise factual information (e.g frequency, severity). Therefore, there seems to be a conflict between clinicians thinking that patients share their emotions for "wrong" reasons and patients thinking that they share their emotions for "good" reasons.

C3. Differing Expectations

Patients' Perspectives: Previous studies have shown that the most common expectations that patients have from a medical visit are: being informed about all processes [START_REF] Brown | Does the use of a glossary aid patient understanding of the letters sent to their general practitioner[END_REF][START_REF] Thorne | Hope and probability: Patient perspectives of the meaning of numerical information in cancer communication[END_REF], and having their clinicians taking into consideration their individual needs [START_REF] Clayton | Patient-centered communication during oncology follow-up visits for breast cancer survivors: content and temporal structure[END_REF][START_REF] Constantino | Interaction between diabetic patients, their general practitioners and a hospital diabetic clinic[END_REF][START_REF] Jackson | Communication about symptoms in primary care: impact on patient outcomes[END_REF][START_REF] Vegni | Difficult encounters with a hemophilic patient: The inner perspective of physicians[END_REF], age [START_REF] Step | Differences in oncologist communication across age groups and contributions to adjuvant decision outcomes[END_REF], gender [START_REF] Root | Communication barriers between older women and physicians[END_REF][START_REF] Siu | Communicating under medical patriarchy: gendered doctor-patient communication between female patients with overactive bladder and male urologists in hong kong[END_REF], and culture [START_REF] Arai | Access, expectations and communication: Japanese mothers' interaction with gps in a pilot study in north/london[END_REF] when prescribing treatment.

For instance, elderly patients are more receptive to clinicians' treatment preferences than young patients but they have more difficulty discussing sensitive subjects with their clinicians, such as their sexual activities [START_REF] Julliard | What latina patients don't tell their doctors: a qualitative study[END_REF]. In some cultures people feel more comfortable and safe to be told what to do [START_REF] Arai | Access, expectations and communication: Japanese mothers' interaction with gps in a pilot study in north/london[END_REF]. However, some patients prefer a more equal type of relationship with their clinicians [START_REF] Julliard | What latina patients don't tell their doctors: a qualitative study[END_REF][START_REF] Arai | Access, expectations and communication: Japanese mothers' interaction with gps in a pilot study in north/london[END_REF][START_REF] Gorter | Doctor-patient interaction: standardized patients' reflections from inside the rheumatological office[END_REF]. Therefore, patients are expecting their clinicians to pay attention to their individual characteristics and treat them accordingly.

Clincians' Perspectives: Clinicians think some patients have unrealistic expectations about receiving easy treatments [START_REF] Hahn | Physical symptoms and physician-experienced difficulty in the physician-patient relationship[END_REF]. The few studies that investigated clinicians' perspectives showed that clinicians sometimes think patients expect them to "do it all" and support patients in all aspects of their disease, including dealing with their family [START_REF] Giroldi | i still have no idea why this patient was here': An exploration of the difficulties GP trainees experience when gathering information[END_REF]. The clinicians in our study observed varying expectations from patients, some of which can sometimes be unrealistic. For example, P3 said "the patients tend to be a strange combination of more passive in their own health, at the same time feeling more entitled, they expect there will be a simple fix to everything and if a doctor can't provide [it], then he's not a good doctor." Patients sometimes look for options that make sense to them; "people want fancy scans where as physicians, we say all that will show you is more details about something that is irrelevant " (P3). The clinicians noted that sometimes patients come with preconceived ideas from their cultural background and expect their clinicians to follow them: "I have a sore throat, I need to get antibiotics and when you look at the culture, all want antibiotics no matter what, antibiotics is the cure because that is what the culture says"(P1).

Differences in Perspectives:

The patients and clinicians have divergent expectations from a medical visit (See Table 4). Clinicians in our study and from the literature mentioned that some patients are looking for easy fixes instead of self-managing their condition or changing their life-style. In contrast, previous studies revealed that patients have a different take on this problem. Patients expect their clinicians to present them with more familiar and tailored information [START_REF] Falvo | Assessing residents' behavioral science skills: Patients' views of physician-patient interaction[END_REF] and failing to meet their expectations can negatively influence their treatment outcome [START_REF] Jackson | The effect of unmet expectations among adults presenting with physical symptoms[END_REF].

C4. Engagement

Patients' Perspectives: Before the 20th century, medical paternalism [START_REF] Thomasma | Beyond medical paternalism and patient autonomy: A model of physician conscience for the physician-patient relationship[END_REF] was the most common model, where clinicians expected patients to follow their lead and apply the prescribed treatment plan [START_REF] Bodenheimer | Patient self-management of chronic disease in primary care[END_REF]. Since the late 20th century, expectations of both clinicians and patients have changed towards a model of less passive patients [START_REF] Thomasma | Beyond medical paternalism and patient autonomy: A model of physician conscience for the physician-patient relationship[END_REF][START_REF] Bodenheimer | Patient self-management of chronic disease in primary care[END_REF]. However, increasing patients' engagement in their care and in the clinical conversation still is a communication challenge. The literature identified several factors that disengage patients from a medical conversation. Patients think that sometimes the speed of information exchange is too fast, causing them to lose track of the conversation [START_REF] Unruh | Transforming clinic environments into information workspaces for patients[END_REF]. This is an even more serious issue for patients who do not speak the same language as their clinicians [START_REF] Julliard | What latina patients don't tell their doctors: a qualitative study[END_REF][START_REF] Weibel | Interpreter-mediated physician-patient communication: Opportunities for multimodal healthcare interfaces[END_REF]. Although there is an option to ask for an interpreter or a family member to translate, some patients are embarrassed to express their need for a translator [START_REF] Julliard | What latina patients don't tell their doctors: a qualitative study[END_REF] and feel like they may lose direct interaction with their clinicians [START_REF] Hudelson | Interpreter-mediated diabetes consultations: a qualitative analysis of physician communication practices[END_REF].

Patients want to be involved in their care, beyond their engagement in the clinical conversation. They show interest in collecting and organizing information related to their disease and life style that will help clinicians become more familiar with their condition and how it affects their everyday lives [START_REF] Macleod | Rare world: Towards technology for rare diseases[END_REF].

Clincians' Perspectives: Clinicians in our study mentioned that not all patients feel that their clinician is a partner in their health. Rather they think they just need to follow what they have been instructed to do. They might feel that they are not invited and thus avoid engaging. Clinicians told us that they expect patients to take more responsibility in managing their condition, to collect and record data that do not require labs such as medical events, list of medications, possible symptoms, chronology of their symptoms, and side effects. To amplify patients' responsibilities, P5 used a specific email address for patients emailing their data to the pain clinic reminding them that they are supposed to be ready: "The email is IamReady-ToChange@. . . so the actual email address is already priming the way they think about their medical encounter." In addition, three of the clinicians (P1, P3, P5) ask their patients to fill out electronic questionnaires before a visit to ensure patients' engagement and to save time during a clinical visit. Another way to engage patients in their care is to involve and inform them about the diagnosis process. For instance, P10 uses a risk calculation website to measure the risk of getting a heart attack for a diabetes patient: " When you make the process more transparent to the patients, they realize I am not just ENGAGEMENT CLINICIANS PATIENTS Think patients are not engaged cause they are intimidated or do not have the necessary information Feel left out because of the speed of information exchange and potential language barriers Want patients to collect information about medical events, medications, and symptoms Want to collect information about their life style and habits Table 5. Clinicians' and patients' perspectives on patients' engagement. looking at you saying OK "I" think you should get this pill. It is more of a "this is how I am deciding whether you should get this". I have taken all of these into consideration" (P10).

A simple solution clinicians use to address language barriers in communication is using translator applications. P1 uses Google Translate when dealing with patients who cannot speak his language. Some other clinicians do not find Google Translate always helpful since it is missing the translation for most of the medical terms. One clinician (P7) uses a special app designed for interviewing patients. The app has pre-recorded sentences for medical interviews, such as "Are you experiencing any abdominal pain?", in different languages.

Differences in Perspectives: Both the clinicians and patients in previous studies are just as willing regarding patient involvement in the care plan. However, there are differences between their opinions on this matter (see Table 5). Clinicians think patients avoid getting involved since they are intimidated by the hierarchy that exists between clinicians and patients [START_REF] Aggarwal | Doctor, can you see my squats?: Understanding bodily communication in video consultations for physiotherapy[END_REF] or do not have the information needed to get involved. However, patients see clinicians' high speed of speech, speaking in a different language, or irrelevance of the information as the main barriers [START_REF] Unruh | Transforming clinic environments into information workspaces for patients[END_REF][START_REF] Julliard | What latina patients don't tell their doctors: a qualitative study[END_REF][START_REF] Weibel | Interpreter-mediated physician-patient communication: Opportunities for multimodal healthcare interfaces[END_REF]. Clinicians also think that creating and maintaining a care plan will help patients to record and remember their symptoms, so that patients would feel more engaged and less frustrated when they come for a medical visit. However, patients want to have clinicians more involed by understanding patient life situations and the impact of their condition on their life [START_REF] Aarhus | Negotiating boundaries: Managing disease at home[END_REF]. Patients think this will help them be more engaged with clinicians and in their care.

C5. Incomplete Information

Patients' Perspectives: Previous studies showed there are a number of reasons for why patients may withhold information from their clinicians. They may think it is not relevant to what clinicians need to know. Patients may also have different priorities, goals, or beliefs such as their career or family, rather than living a healthy long life or just simply getting better [START_REF] Van Wieringen | Intercultural communication in general practice[END_REF][START_REF] Lim | it just seems outside my health": How patients with chronic conditions perceive communication boundaries with providers[END_REF]. Prior negative experiences and mistrust of clinicians are other reasons patients may choose to withhold information [START_REF] Moffat | Sub-optimal patient and physician communication in primary care consultations: its relation to severe and difficult asthma[END_REF]. Another factor causing patients not to reveal information is thinking they are an expert on their disease after having dealt with it for a long time [START_REF] Macleod | Rare world: Towards technology for rare diseases[END_REF]. Therefore, they may not necessarily see the value of sharing all detailed information about their disease and may prefer to manage it themselves [START_REF] Lim | it just seems outside my health": How patients with chronic conditions perceive communication boundaries with providers[END_REF][START_REF] Macleod | Rare world: Towards technology for rare diseases[END_REF].

Clincians' Perspectives:

The clinicians in our study told us that they do not receive all the information they need from patients. They think patients are sometimes not even aware of their problem. Patients may visit them with a problem in

INCOMPLETE INFORMATION

CLINICIANS PATIENTS Think patients have unknown problems and want to investigate them Do not mention information that they think is not relevant Want patients to have a longer and healthier life Want to be able to live a normal everyday life Table 6. Clinicians' and patients' perspectives on incomplete information.

mind, but there may be other problems. For example, P1 said: "Depression can express itself as fatigue, as pain. [For example saying,] 'I have pain in my back' but it is really depression because you don't have a job and are feeling low self-esteem, the problem is often mental health but being manifested in a physical form." Clinicians are mostly concerned with providing patients with the best treatment options to help them have a longer and healthier life [START_REF] Van Wieringen | Intercultural communication in general practice[END_REF][START_REF] Lim | it just seems outside my health": How patients with chronic conditions perceive communication boundaries with providers[END_REF]. Therefore, they order extra tests to double check the information they received from patients and investigate possible unknown problems [START_REF] Loos | Wearable health monitors and physician-patient communication: The physician's perspective[END_REF].

Differences in Perspectives: Both patients and clinicians are aware that patients sometimes hide or fail to communicate certain information (See Table 6). Clinicians think that patients are sometimes not even aware of their medical problem. Patients, on the other hand, think that some information is not relevant to share with their clinician. Patients and clinicians may sometimes have different goals. For instance, clinicians may want their patients to live longer and healthier lives, but the patients may want to live a normal everyday life without constantly having to think about their illness.

C6. Information Sources

Patients' Perspectives: Evidently, patients see value in the information they receive from clinicians during an in-clinic visit. Previous studies have shown that patients develop different information management strategies. These include taking notes on a piece of paper or bringing another person along to help them capture the information during a visit [START_REF] Unruh | Transforming clinic environments into information workspaces for patients[END_REF]. However, patients are more interested in getting tailored information that matches with their everyday life [START_REF] Gonzales | Co-designing patient-centered health communication tools for cancer care[END_REF], causes of their symptoms, the reasons why they developed a disease [START_REF] Chung | Boundary negotiating artifacts in personal informatics: Patient-provider collaboration with patient-generated data[END_REF], and to verify the diagnosis or treatment that they received from their clinicians [START_REF] Attfield | Patient information needs: pre-and post-consultation[END_REF]. As mentioned earlier in "C3. Engagement", patients are becoming more proactive in their care management. As a result, they seek out this information online [START_REF] Bowes | i need her to be a doctor': patients' experiences of presenting health information from the internet in GP consultations[END_REF]. They mostly look online for information that can empower them with their personal needs [START_REF] Broom | Virtually he@lthy: the impact of internet use on disease experience and the doctor-patient relationship[END_REF][START_REF] Wilcox | Remedy: Supporting consumer-centered medication information search[END_REF][START_REF] Wilcox | Patient-centered tools for medication information search[END_REF]. This led some online forums to employ health experts as moderators to help provide clinical knowledge and avoid misinforming patients [START_REF] Huh | Patient moderator interaction in online health communities[END_REF].

Clincians' Perspectives: The clinicians stated their concerns on the negative effects of searching for information on the internet which may result in unnecessary stress on patients, a phenomena called cyberchondria [START_REF] White | Cyberchondria: Studies of the escalation of medical concerns in web search[END_REF]. Clinicians in our study have doubts about the credibility of all the information that patients gather, and wonder if patients have access to the necessary information. The clinicians are concerned that patients do not always look for necessary information or may not fully understand what they find. As a result, the clinicians feel they still need to inform patients in order to ensure that they have the correct information. Some clinicians think that patients Want to know about the cause of their symptoms and the reasons why they developed a disease Want to educate patients about their anatomy Want information that is practical in their daily lives Table 7. Clinicians' and patients' perspectives on information sources are often overwhelmed with the amount of information they receive during their visit. To address this issue, one of the clinicians, P10, told us that she was keen to allow patients to record their conversation. However, she was concerned with the healthcare policies on recording a visit. In addition, both the clinicians in our study and previous studies that looked at the clinicians' point of view on educational materials agree that patients will have a higher incentive to get involved in their care if they have an understanding of their anatomy and of the mechanism of their disease [START_REF] Ni | AnatOnMe: Facilitating Doctor-patient Communication Using a Projection-based Handheld Device[END_REF]. One clinician used the following strategy: "I was actually taking their own smart phone and filming them doing their exercises. Because then they have it on their phone and my voice talking through it and they can see their own body doing it" (P6).

Differences in Perspectives: Both clinicians and patients see value in educating patients about their disease [START_REF] Ni | AnatOnMe: Facilitating Doctor-patient Communication Using a Projection-based Handheld Device[END_REF]. However, clinicians and patients disagree on the material that they find useful to discuss during a medical exam visit (see Table 7). The clinicians are interested in educating patients about their conditions, anatomy, and mechanism of their disease and making sure patients understand all the necessary information. Patients may not find all this information useful, and they need to know how to turn this knowledge into everyday practice [START_REF] Gonzales | Co-designing patient-centered health communication tools for cancer care[END_REF][START_REF] Casarett | Can metaphors and analogies improve communication with seriously ill patients[END_REF]. As a result, not only do patients need to learn and understand this information but they also have to make an extra effort in finding ways to apply this knowledge in their lives perhaps through searching for this information online.

C7. Medical Terms

Patients' Perspectives: Patients sometimes like to use medical terminology when talking to their clinicians. Previous studies showed that speaking in "surgeon-ese" [START_REF] Macleod | Rare world: Towards technology for rare diseases[END_REF] is as much for the patients to feel proud of their own expertise and ability to use medical terms as it is for the sake of the clinicians [START_REF] Macleod | Rare world: Towards technology for rare diseases[END_REF][START_REF] Siek | Pride and prejudice: Learning how chronically ill people think about food[END_REF].

Clincians' Perspectives:

The clinicians in our study think patients sometimes use medical terminology when describing their condition, to help the clinician or to save time. However, problems can arise from an incorrect understanding of the medical terminology: "Every time they use a medical term I have to stop them and ask what they mean. I want to hear their story, not their story filtered through someone else" (P3). To address this issue, one clinician tried to educate patients about medical terms and how to describe their conditions: "Sometimes I will say a fancy word then I will have later a term that might match that, to try to teach them as we are going along. Sometimes the language that is watered down loses some of its specificity and when that happens, there could be a danger of misinterpretation or misapplication" (P2).

MEDICAL TERMS CLINICIANS PATIENTS Think patients want to help clinicians by using medical terms Want to appear more informed and feel proud of their ability to use medical terms Do not trust patients' understanding of the medical terms Want to feel that they are an expert on their own disease Table 8. Clinicians' and patients' perspectives on use of medical terms.

Differences in Perspectives:

The use of medical terms by patients during an in-clinic visit is a challenge. We found subtle differences between patients' and clinicians' perspectives regarding the reasons why patients use medical terms (see Table 8). Some of the clinicians in our study are skeptical when patients use medical terms and do not fully trust that the patients understand the terms. They think that patients' understanding of a medical term may be different from their own understanding, which may result in misunderstanding and misinterpretation. This is in line with past studies that have shown that patients do not always use medical terms correctly [START_REF] Castro | Babel babble: Physicians' use of unclarified medical jargon with patients[END_REF][START_REF] Boyle | Difference between patients' and doctors' interpretation of some common medical terms[END_REF]. In contrast, clinicians and patients disagree on the reasons why patients use medical terms. The clinicians in our study think that patients are eager to use medical terms to help clinicians and to save time in the visit. However, patients like to use medical terminology to feel proud of their expertise and appear more knowledgeable and informed [START_REF] Macleod | Rare world: Towards technology for rare diseases[END_REF][START_REF] Siek | Pride and prejudice: Learning how chronically ill people think about food[END_REF].

DESIGN IMPLICATIONS

In this section we discuss how the subtle differences we have unearthed can be useful in formulating design directions. Being aware of the subtle differences between clinicians' and patients' ideas about communication challenges can play an important role in designing communication technologies that benefit both clinicians and patients. Both clinicians and patients raised the same issues, talking about anxiety, emotions, differing expectations, challenges of engagement, incomplete information, information sources, and the use of medical terminology. While the topics are the same, the details and thinking around these issues hold fundamental differences. These deep-seated differences pose a considerable challenge for designers who wish to develop technology that might help improve clinician-patient communication.

Considering a Holistic Approach to Technology Design

Both the clinicians and patients were aware that the patients' anxiety was a problem that affected the communication. In fact, the patients' discussion about anxiety pointed directly to technology. At first glance, they consider technology to be a problem and discuss how the clinicians disappearing behind the computer screen adds to their anxiety. Screens can restrict movement and interfere with work practices [START_REF] Luff | Tasks-in-interaction: Paper and screen based documentation in collaborative activity[END_REF], and can impact communication between clinicians and patients [START_REF] Greatbatch | How do desk-top computers affect the doctor-patient interaction[END_REF][START_REF] Greatbatch | Interpersonal communication and human-computer interaction: an examination of the use of computers in medical consultations[END_REF]. While one could interpret this as an indication the technology might not be a solution, it can also be taken as an invitation to change the way we think about technology use during the in-clinic visit [START_REF] Crampton | Computers in the clinical encounter: a scoping review and thematic analysis[END_REF]. Interestingly, the clinicians suggested trying alternate technological form factors such as using a phone, which is smaller and forms less of a barrier between the patient and the clinician. A useful design direction is to consider the set-up of the clinical consultation environment, i.e., how technology can be used more seamlessly to ensure that it does not form a barrier between the patient and clinician.

Involving Patients through Information Transparency

It is possible that increasing information transparency may contribute to reducing anxiety, encouraging engagement and reducing the amount of missing information. Patients said that clinicians recording information on their computer and not maintaining eye contact contributed to their anxiety [START_REF] Chung | Boundary negotiating artifacts in personal informatics: Patient-provider collaboration with patient-generated data[END_REF]. They said they felt left out and not involved. Clinicians think that if patients could feel part of the process of data recording it might encourage them to be more involved. Clinicians suggested that allowing patients to view the screen and making it possible for the patients to follow the information that clinicians record may reduce patients' anxiety. Also, it would give them another opportunity to add missing information or bring up what they initially forgot to say. However, the amount and the type of information that can be displayed would require careful consideration since clinicians may be concerned about sharing sensitive data that could make patients worry even more.

Providing Alternate Ways of Exchanging Information

In-clinic medical visits are almost exclusively a verbal exchange. To increase patients' comprehension, clinicians use technology to include alternate modalities like written words and various visuals including images, charts, and even animations. In addition, patients use various ways to exchange information that they collected with their clinicians. There is an increasing number of technologies that facilitate collecting and presenting self-generated data [START_REF] Nunes | Self-care technologies in hci: Trends, tensions, and opportunities[END_REF][START_REF] Andersen | Alignment of concerns: A design rationale for patient participation in ehealth[END_REF]. Designing technologies/visualizations that provide both patients and clinicians with alternative ways to look at patient-generated data could be a promising approach for future work in this area.

Incorporating Motivational and Decision Support Tools

Recently, expectations of both clinicians and patients have changed towards a model of more active patients [START_REF] Thomasma | Beyond medical paternalism and patient autonomy: A model of physician conscience for the physician-patient relationship[END_REF][START_REF] Bodenheimer | Patient self-management of chronic disease in primary care[END_REF]. Clinicians expect patients to take more responsibilities in managing their condition instead of putting it all on the clinicians' shoulders. However, patients may not always see value to engage in their care. There is a need for new technological tools that assist clinicians in motivating patients to stay engaged in their care. The interviewed clinicians took various approaches to address this issue. One clinician involved patients in the diagnosis process and in calculating health risks to motivate them to take their treatment more seriously. A promising research direction would be to investigate the design of technologies and tools that provide opportunities for patients and clinicians to collaboratively input and analyze information. These tools can encourage patients to get more involved in their treatment process. Another clinician carefully named the email address she uses -IamReadyToChange -to actively promote health-related goals when patients send their information to her. Developing motivational tools could be a promising direction when designing new communication technologies to encourage patients' engagement in their care.

CONCLUSIONS

From our exploration, we found that while patients and clinicians may agree on the topics of the challenges they face when communicating, they have different attitudes or reasons for these challenges. By combining a literature review with clinician interviews, we note a series of subtle differences between patients' and clinicians' ideas about seven major inclinic communication challenges: anxiety, emotions, differing expectations, engagement, incomplete information, information sources, and use of medical terms. In our investigation, we considered patients' perspectives in conjunction with clinicians' perspectives plus their current suggestions for possible technology solutions. In this manner, we contribute to the holistic understanding of clinician-patient communication and offer design directions for technologies that more fully support

Table 1 .

 1 Summary of the literature review and our clinician interviews.


Fateme Rajabiyazdi

Charles Perin

Sheelagh Carpendale
email: sheelagh@ucalgary.ca

Julie Babione

Joseph Tropiano

Maria Santana

Jaime Kaufman

William Ghali

Peter Sargious

Involving Patients in their Care Plan: Patients' and Care providers' Perspectives

Keywords: Patient-centered care plan, care providers' and patients' perspectives, qualitative study, semi-structured interviews ACM Classification H.5.m [Information interfaces and presentation (e.g., HCI)]: Miscellaneous

In this paper, we present the results of a series of qualitative studies involving patients and care providers to explore opportunities for involving patients in their care. Empowering patients in their own care can facilitate the treatment process, increase patients' quality of life, and support patients in reaching their goals. A cultural shift towards patient centered care is currently underway, however, at least in Canada, there is still much to be done. Through interviews and focus groups with patients and care providers, we aim to contribute to this cultural shift by identifying three areas of opportunity to involve patients in their own care and be a part of their care team. We then describe potential technology solutions to address these opportunities.

Introduction

The research literature is filled with evidence that involving patients in their care can have positive effects on their quality of life and treatment plans [START_REF] Doyle | A systematic review of evidence on the links between patient experience and clinical safety and effectiveness[END_REF][START_REF] Rathert | Patient-Centered Care and Outcomes: A Systematic Review of the Literature[END_REF]. Providers are also starting to see value in involving patients in their care, however they may not have enough information about how and where to involve patients in their care. Meanwhile, patient centered care plans are a relatively new vehicle that is introduced for including patients in their care [START_REF] Luxford | Promoting patient-centered care: a qualitative study of facilitators and barriers in healthcare organizations with a reputation for improving the patient experience[END_REF].

There are many definitions of what a patient-centered care is [START_REF] Donald | What 'patient-centered' should mean: confessions of an extremist[END_REF], therefore, we developed our own following definition based on the research we have conducted and with the purpose of facilitating the evolution of this concept. We define a patient centered care plan to be a living document (i.e. continually updated and refined) co-created by patients and their care providers. The patient centered care plan combines patient goals and values with provider expertise and guidance to facilitate a holistic approach to care.

Recently, there has been a movement towards strengthening patient-centered care plans within the Canadian healthcare systems [START_REF]Patient-centred Primary Care in Canada: Bring it on Home[END_REF][START_REF]Patients First: A proposal to strengthen patient-centred health care in Ontario[END_REF]. However, there is a lot of work that needs to be done towards better understanding the opportunities for involving patients in their own care. To fill this gap, and to expand our understanding of this problem, we conducted a series of focus groups and interviews with 18 patients who have chronic conditions, and interviewed with 38 care providers with differing expertise to help us identify possible opportunities for involving patients in their own care.

From the results of the focus groups and the interviews, we identify three main areas of opportunity for supporting and involving patients in their own care: i) Patients and providers have different views on tracking data, ii) patients need information and support guidance, and iii) patients and providers have different goals. Finally, we indicate possible future directions for the HCI community based on our results, and propose three potential technology solutions for the three main opportunities that we identified to support patients' involvement in their own care.

Eliciting patients' and providers' perspectives

Patients: In collaboration with the University of Calgary Patient and Community Engagement Research Group [START_REF] Stromer | Integrating Patient-Centered Research Methods within User-Centered Design: a Patient-Centered Digital Care Plan[END_REF], we recruited 18 patients with one or multiple chronic conditions. Each participant took part in one or more study activities, including focus groups and/or individual interviews. Patients' chronic conditions included breast or thyroid cancer, diabetes, liver failure, leukemia, bone marrow transplant recovery, heart problems, scleroderma, chronic obstructive pulmonary disease, arthritis, depression, bi-polar disorder, and anxiety. In the session, patients were asked to relay their experience and talk about how they currently manage their ongoing care, as well as what they perceive as gaps. The patient focus groups and interviews lasted 60-120 minutes.

Care providers: We conducted semi-structured interviews with 38 care providers and support staff (see Table 1). We used semi-structured interviews in order to allow care providers to influence the conversation.

Provider Type

No We asked care providers about their perspective on opportunities for involving patients in their own care plan and how a care plan can affect the communication dynamics between patients and care providers. The questions covered two main topics: 1) How do you currently involve patients in your care planning? and 2) What kinds of information or content do you see as being vital to the success of a patient centered care plan solution? The care provider interviews lasted 30-60 minutes depending on providers availability and the interview process.

Analysis:

We audio recorded all the interviews and the focus groups. Then, we transcribed and analyzed the interviews using inductive qualitative methods [START_REF] Strauss | Grounded theory in practice[END_REF]. We then clustered codes with similar meanings. Finally, we identified the main categories and created an affinity diagram [START_REF] Turner | Twenty-Five Years of Group think Theory and Research: Lessons from the Evaluation of a Theory[END_REF] to define and refine key themes (see Figure 1).

Results

We analyzed the data for 38 care providers and 18 patients with different chronic conditions. In comparing patients' and providers' perspectives, we gained an in-depth understanding of the opportunities for involving patients in their care. The collected data is rich, however, due to the space constraints, in this paper we only discuss three key opportunities to evolve patient centered care plans.

Patients and providers have different views on tracking data

Care providers in our study mentioned that in recent years patients are much more eager to track their health data and share this collected information with their providers. Patients collect various types of data including weight, medication, exercise routines, smoking habits, sleep habits, nutrition, and emotional states. Patients in our study also showed interest in collecting data as a mean to be involved in their own care.

However, the providers in our study said that not all of their patients are aware of the type and the amount of information that they need to collect for their disease. The care providers think patients often collect unnecessary information and as a result miss tracking the necessary information. Patients also get frustrated when they cannot see any effective use of their data. One of the providers told us one of his/her patients was collecting nutrition data in order to lose weight, however it was also important to track emotional states to identify the reasonings behind the patient's eating disorder: Both providers and patients in our study expressed interest around more effective data collection indicating that this is an area in which work can be done to better support it.

"I know

Patients need information and support guidance

The care providers in our study told us one of the problems they face with involving patients in their own care is that often patients lack awareness about their disease. Both patients and care providers indicated that a greater understanding of patients' situation could assist them in their journey. Therefore, the care providers found educating patients one of the important opportunities for involving them in their care plan.

The care providers in our study told us that they try to edu-cate patients during their visit by providing them with information about their disease and their conditions. This information includes, but is not limited to:

1. Adjustment to chronic condition support (providing education and support in graduated steps, in consultation with care providers). 2. Medical literature (someone who has medical or scientific background might want or appreciate academic publications). 3. Guidance on using platform of choice including selfmanagement technologies to support goals, conditions, etc, such as Fitbit, Glucose meter, food logging apps, and sleep monitors. 4. Using the internet wisely (how to critically evaluate the credibility of information found on the internet). 5. Information on support groups (i.e. www.patientslikeme. com, Facebook groups , online communication support).

Many patients are also eager to be involved in their own care and to learn about their situation, however, they may not be ready to grasp all the information, they may not be able to remember all the information, or there may not be enough time to go through all the necessary information during a clinical appointment. One of the patients said: "in the beginning when I had cancer and I saw the surgeon which was the day after I found out that I had cancer, I got a folder with so much information, like it was all booklets . . . you are bombarded with so much information. I went through a couple of leaflets and I thought 'I don't want all of this', so I put it all in with the binder, closed the zipper and I put it away". There are multiple factors that could influence the patients' ability to understand their situation, including educational background, information seeking preferences, and stage of disease, e.g., "the fact that it's [the care plan] patient centered and so it has to be understandable, it has to provide information that useful to a patient . . . it needs to be tailored". As such, personalized patient knowledge support is another area of opportunity to involve patients in their care plan.

Patients and providers have different goals

Patients' goals are not always aligned with care providers' goals. Patients sometimes have goals such as being able to play with grandchildren once a week, attending special events (e.g., a wedding), traveling, retiring, reducing their number of medications etc.. that may not be their providers' priority when planning patient care. The care providers in our study told us that sometimes the disagreement between patients' and providers' goals cause difficulty in communicating with patients and in planning for patients' care. For instance one provider described one of his/her patients' situation as "[She is] a 37 year old woman with metastatic cancer, she has a 2 years old and a 5 years old. She said her goal is to live long enough so her 2 year old remembers her. And she said physicians never talked to her about her end of life goals . . . and she said she's willing to put up with some difficult treatments . . . she is looking at longevity".

Ensuring a shared understanding of patients' and providers' goals for a treatment plan is the third area of opportunity for involving patients in their care.

Technology Solutions

Findings from our study revealed three areas of opportunities for involving patients in their care. In this section, we propose a potential technological solution for each of these patient centric care components.

Patient-Generated Data Visualization

Collecting patient-generated data is becoming increasingly common in disease management. Patients use various tools to collect health and lifestyle data in disparate places. How-ever, aggregation and effective use of this data remains a challenge. In addition, most of the existing tools do not support collaborative data sharing between care providers and patients, thereby exacerbating these challenges [START_REF] Chung | Boundary Negotiating Artifacts in Personal Informatics Patient-Provider Collaboration with Patient Generated Data[END_REF]. Both providers and patients in our study agree that this data could be used to make smarter decisions regarding patient disease or treatment options, to improve patients' quality of life, and to share patients' data with their providers to aid making decision about their ongoing care. Patients spend a lot of time preparing the information in an effort to promote a shared understanding. However, care providers also need to invest time in making sense of the patients' data.

To address this problem, providers in our study told us they are willing to guide patients in collecting necessary data types. However, they currently lack support. The first technology solution we propose is to design a collaborative platform for care providers and patients to select together the type of data that patients need to monitor. From this collaborative platform it would be possible to explore an overview visualization of patient-generated data that is designed for providers to be able to gain an understanding of the patients' wellbeing in a short period of time.

Collaborative Information Sharing

Patients receive a lot of information during a clinical visit. This information is prepared by care providers in different formats including verbal, printout documents, booklets, link to related websites etc. however, sometimes the information is hard to understand for patients. To fill this gap, care providers spend time with patients going through more details, trying to make sure patients grasp all the necessary information. However, as the providers in our study mentioned, patients may not understand all the information or they may have difficulty internalizing it.

To support patients in accessing appropriate resources in a timely manner, we will examine the potentials for designing interactive documents through which care providers can educate patients about their situations and care mechanisms processes in a collaborative environment. In this platform, patients could have access to appropriate information concurrently with care providers providing them with more opportunities and greater knowledge to actively participate in their care. Patients could also potentially add their own notes and share them with providers. This platform would have the capacity to involve patients in the education process, to include them in decision making, and to support both parties in a shared awareness of patients' understanding.

Follow Up Care Timeline Visualization

As previously described, the goals of patients and providers are sometimes different. When providers plan patient care without considering patient priorities and goals, they think patients may feel disconnected from their own care. We propose an interactive adjustable timeline visualization that demonstrates all the patients' care treatment processes. This visualization could allow providers to collaboratively incorporate patients' goals with their own expert opinion into the patients' ongoing care plan. This also facilitates the oftenexpressed patient need to have a clear view and understanding of what is next, therefore enabling them to plan their life around their care.

Conclusions

While there has been a considerable increase in awareness of the importance of involving patients in their care, more work remains to be done in identifying opportunities to evolve patient-centered care. In this paper, we reported on a series of qualitative studies from the perspective of both providers and patients and explored opportunities for effectively involving patients in their care. Our results allowed us to iden-tify three key opportunities: 1) supporting different views of tracking necessary data, 2) providing patients with information and guidance, and 3) incorporating patients' and providers' goals. Based on our results, we introduced three possible directions for future work in terms of designing technologies for empowering patients in their care: 1) designing a patientgenerated visualization, 2) providing patients and providers with a collaborative information sharing platform, and 3) supporting patients with a follow up care timeline visualization.

Figure 1 :

 1 Figure 1: Affinity analysis of the interview transcript quotes.

Table 1 :

 1 Care providers specialties

		. Provider Type	No.
	Physicians	10	Unit manager	1
	Pharmacists	5	Kinesiologist	1
	Nurses	11	Medical office assistant	1
	Social Workers	3	Patient flow coordinator	1
	Dietitians	1	Manager of health dept.	1
	Health consultants	2	Clinic manager	1

Acknowledgment

This research was supported in part by W21C Research and Innovation Centre, AITF, NSERC, and SMART Technologies. We would like to thank patients and care providers, and support staff who participated in the interviews, the PACER group, Megan Crosby, Marlyn Gill, and Dilshaan Panjwani for their contributions.


Fateme Rajabiyazdi Innovis

Charles Perin
email: charles.perin@city.ac.uk

Lora Oehlberg
email: lora.oehlberg@ucalgary.ca

Sheelagh Carpendale Innovis
email: sheelagh@ucalgary.ca

The Individuality of Challenges to Technology Approaches to Personally Collected Health Data

Keywords: Visualization, Personal Health Data, Technology for Communication. ACM Classification H.5.m [Information interfaces and presentation (e.g., HCI)]: Miscellaneous

While patients increasing willingness to collect their personal health data portends improvements in the individualization of health care, making it possible for the health care providers to effectively act upon these personal data collections poses its own challenges. In this paper, we discuss the challenges we are facing as we work towards the creation of tools to help patients present this data to their care givers.

Introduction

Tracking personal health data is becoming more common among patients. Among those, patients who suffer from chronic conditions are more encouraged to collect their health data. They may have different goals in mind for collecting their data such as preventing more complication, taking control and managing their condition, maintaining their health condition, and helping clinicians with the process of diagnosis.

Reviewing the personal health data empowers patients for making decision for their care either at home or when they visit clinicians. However, there are many limitations for sharing and discussing patient's data with clinicians during a medical visit. Limited time, clinician's different expertise and practice etc. may interfere with smooth communication between clinicians and patients.

Designing visualization or technologies for clinician-patient communication is a complex problem that is already receiving considerable attention (e.g. [START_REF] Ni | AnatOnMe: Facilitating Doctor-patient Communication Using a Projection-based Handheld Device[END_REF][START_REF] Piper | Supporting Medical Conversations Between Deaf and Hearing Individuals with Tabletop Displays[END_REF]). It is still unclear if, when, and what types of technologies are appropriate for supporting the data communication between clinicians and patients. Designing and developing technologies for improving this communication among clinicians and patients is still far from a solved problem. Thus, in this paper we discuss the methodological opportunities and the challenges researchers may face in a) understanding clinician-patient communication challenges when discussing data; b) designing appropriate technologies to improve this process; and c) investigating clinicians' and patients' reception towards the designed technologies.

Understanding Both Parties' Perspectives

There are different methodologies to study patients' and clinicians' perspectives about collecting, maintaining, and sharing patient-generated data including observing the interactions during a medical visit and interviewing both parties.

Choosing observation as the method to gain undestanding of clinicians' and patients' interactions has its own advantages and disadvantages. One can never be sure if or when a communication challenge may occur. In clinician-patient relations, the indication is that clinicians usually only have trouble with 1 in 6 of their patients [START_REF] Leve | I still have no idea why this patient was here': An exploration of the difficulties {GP} trainees experience when gathering information[END_REF], and usually the com-munication issues with a given patient have just one challenge. Thus, collecting a broad overview of communication challenges via observation would be lengthy and likely to be incomplete.

In addition, when researchers observe the clinician-patient interactions during a visit, there may be the effect of being observed by a third person. Being observed or recorded can affect both patients and clinicians in sharing sensitive manners. However, observation method can serve us better if our aim is to analyze non-verbal cues such as facial and body gestures happening during an interaction [START_REF] Patel | Visual feedback on nonverbal communication: A design exploration with healthcare professionals[END_REF].

One of the strengths of interviews is that it is possible to ask the questions in which you are directly interested instead of observing the interactions for a long time. Furthermore, interviews give both patients and clinicians the chance to share their thoughts in a timely manner.

Clinician

One way to shed lights on clinicians' perspectives about discussing patient-generated data with patients during a medical visit is to study clinicians' perspectives. It is important to interview a set of clinicians with a wide variety of expertise. Each clinician may have a different experience depending on the type of patients they visiting, their own practice, and the healthcare service they practice medicine.

However, finding clinicians willing to give interview time is a challenge. Furthermore, to understand the interactions happening between clinicians and patients, we need to include clinicians who regularly do have typical visits in their practice where they see patients in their office/clinic for diagnosis or treatment purposes. These particular clinicians are usually busier due to the nature of their practice as opposed to clinicians who are not directly interacting with patients. Therefore, recruiting clinicians who are in direct interactions with patients as participants for interviews are harder due to their time constrains.

In addition, in our experience some clinicians are skeptical of the value of technology research. Thus, they may not be very receptive to the idea of participating in research studies for designing new technologies. However, interviewing this group of clinicians may reveal many technology challenges that limit their practice. Only interviewing clinicians with a positive attitude toward technology research can potentially biased for a particular solution approach.

Patient

Patient interviews can reveal patients' experiences at collecting, maintaining, transferring, and discussing their health data with clinicians. However, recruiting many patients who are willing to give their time and discuss about their conditions is difficult. Some patients are reluctant to share information about their interactions with clinicians since they may be concerned the information could be revealed to their clinicians. Despite informing patients about the research ethic rules of keeping the patient data private, the hesitancy from some patients still exists.

In addition, in some cases it is helpful to look at patientgenerated data to get a sense of real-world examples of data. In these circumstances, it is even harder to find the right population of participants.First, many patients still rely on their memory to keep track of their health data, so they do not have any written record of their data to share with researchers. Second, among those patients who do collect, record, and maintain their data many use apps or tools that do not provide an easy way to export or share their data. Therefore, this is another obstacle for them to access their data bring it with them to an interview session or sending it electronically. Lastly, even if they have their data written in a notebook or saved on in a format of an app, many patients are not willing to share their data with researchers.

Designing New Technologies

The next step is to design prototypes based on the understanding gathered over the course of interviews and observation studies. The process of designing a technology prototype is an iterative process involving several phases of sketch, design, implementation, and critique with both patients and clinicians.

Running participatory design workshops to share and critique designed prototypes with both clinicians and patients is necessary. While inviting clinicians and patients to simultaneously discuss the prototypes can be enlightening, it can also be challenging. Clinicians or patients may hesitate speaking their mind with the presence of the other party. While, conducting participatory design workshops separately with clinicians and patients may be a solution to this problem, the discussion can lose some richness.

Studying Clinician and Patient Reception Towards New Technologies

Finally, designing new technologies for this domain is difficult, as clinicians are sometimes reluctant to adopt technology into their practice [START_REF] Reuben | Here's My Phone Number, Don't Call Me: Physician Accessibility in the Cell Phone and E-mail Era[END_REF]. The structure, demands, and requirements of the healthcare system, along with how short most clinician-patient communications are, are important factors to take into consideration to improve the adoption of clinician-patient communication tools. It can be a good idea to first focus on situations where clinicians are starting to use communication technology support, since this use could indicate that clinicians can be more ready to accept technology in these settings. If they are more willing to accept technologies in these areas, it is possible that further adoption would pose fewer disruptions.

Conclusion

There are many technologies designed for collecting personal data. However, there is less focus on designing technologies that leverage sharing patient-generated data with clinicians. Designing right technology for a general population of patients and clinicians may not be possible at the beginning. Designing more solution points in this context may gradually help us shape a holistic understanding of how to design technology for supporting in-clinic communication.

To continue this path, we need to consider the reasons behind the success of these technologies. It is possible that the reason behind their success is the consideration of both clinicians' and patients' perspectives in their design. Based on our previous experiences studying clinician-patient interactions and designing new technology prototypes in this space, we have discussed the potentail opportunities and challenges we have faced. Example of challenges are recruting the right population as participants, accessing patient-data, including both parties simultanicely in study session, and skepticism on adapting new technologies.

About Workshop Participant

Fateme Rajabiyazdi is a computer science PhD candidate at University of Calgary under supervision of Prof. Sheelagh Carpendale and Prof. Lora Oehlberg. Her research focuses on design and development of technology prototypes for improving communication between clinicians and patients. She works in an interdisciplinary area between computer science and healthcare. She has a close collaboration with a medical team called Ward of 21st Century. This workshop is an opportunity for her to share her experi-ences working with two groups of researchers from healthcare and computer science.


Daniel Barlet

Daniel Barlet Gauduchon

Gauduchon's form and compactness of the space of divisors (third version)

Daniel Barlet * .
15/09/17

This paper has been withdrawn by the author : the proof of the vanishing of d π on H is not correct.