Introduction

These guidelines deal with factors related to encouraging and empowering recipients of care to be active participants and advocates in their healthcare.

5.1 Understandable communication

Communication needs can vary for a variety of reasons, first language, hearing, fatigue, cognitive factors, AV equipment issues. Not understanding or comprehending what is being communicated can cause misunderstanding, make healthcare situations stressful, reduce effective and quality care, and escalate anxiety.

5.1.1 Functional needs

• Understand what is being communicated.
• Alleviate anxiety and stress.
• Balancing professionalism and empathy.
• Desire to be an equal partner in personal healthcare.
• Desire to understand personal medical journey

5.1.2 Clarifying questions

• Are interactions and other forms of communication available in other languages? Can communication be easily understood or translatable?
• Can non-verbal interactions be used to convey meaning?
• Is the individual able to understand the significance of what is being communicated?
• Can the patient specify their communication preference in advance?

5.1.3 Practices

• Establish communication needs ahead of time and make participants aware of the different options they can use to make their experience better.
• Use plain, easily understood language that can be easily translated by another person, translation service, or programmatically using translation software. This applies to intake materials, medical records, test results, and language used during consultations.
• Do not assume that the recipient of care is able to understand or interpret the significance of the test / lab results. Provide necessary context, resources, and information to enable an informed understanding.
• Make test results accessible and understandable (multi-modal, simplified language).
• Provide options for language preferences, tools for translation, translation service, or language-neutral communication.
• Non-verbal forms of communication (e.g. gestures, symbols, emoticons, communication boards, and sign language) can be an effective way of conveying meaning in situations where verbal communication is not possible.

5.1.4 Software approaches

• Allow individuals to select their preferred language which can apply to forms of communication and any software interfaces.
• Easy to use and understand software user interfaces that support the necessary features/functionalities for the patient and health care practitioners, including accessible technology (other related guideline: 3.3 Interoperability with assistive technology above).
• Personalization features to allow the users to customize the user interface/experience to their own personal needs and preferences.
• Provide access to patient records, notes, and test results/artifacts.
• Include resources to help understand personal medical information, such as a glossary of medical terms, understanding test results and numbers.
• Use an annotation system for healthcare practitioners to draw attention to and explain results. Using the same system, allow patient to annotate, ask questions, and request feedback about test results / charts. (Other related guideline: 5.2 Provide extra opportunities for questions and feedback below).
• Enable individual to be able to share portions of their records / information with people in their circle of care.
• Use digital interactive content that can be tracked by report practitioner instead of static content. For example, instead of a static image with 4 choices, use a web form with the 4 choices which the therapist can check the results.

5.1.5 Other related guidelines

• 2.5 Avoiding assumptions
• 3.3 Interoperability with assistive technology
• 5.2 Provide extra opportunities for questions and feedback
• 5.3 Encourage self-documentation and personal data logging

5.2 Provide extra opportunities for questions and feedback

It may be difficult for some individuals to understand the significance of what is being communicated to them. Providing ways for individuals and their circle of care to give feedback or ask questions is helpful in situations where extra time is needed to process or understand information such as test results. The same feedback system can be used as a method for improving care delivery.

5.2.1 Functional needs

• Be able to have questions answered or provide feedback to practitioner.
• Opportunity for practitioners to follow-up with individuals on their healthcare.
• Desire for individuals to improve experiences for others.

5.2.2 Clarifying questions

• Is there a way for individuals to easily ask questions or provide feedback to the practitioner?

5.2.3 Practices

• Provide opportunity for individuals to respond to or ask questions using self-documentation approaches like those under 2.6 Improving service by storing and sharing complimentary information above.
• Provide resources to individuals to help them understand information like test results or treatment options.
• Proactively seek feedback and ask if there are any questions related to their previous appointment, test results, treatment options, etc.
• Treat feedback as an opportunity to support individuals during vulnerable moments.
• Periodic review of practices and processes and incorporate feedback.

5.2.4 Software approaches

• Note/annotation system to allow patient to leave notes on results for discussion at follow up appointments.
• Automated system to solicit feedback or questions from individuals.

5.2.5 Other related guidelines

• 2.6 Improving service by storing and sharing complimentary information

5.3 Encourage self-documentation and personal data logging

Documenting personal healthcare journeys can help individuals understand their circumstances better and empower them to seek treatment or make positive changes. Self-documentation by recipient of care can also provide healthcare practitioners useful contextual information that can help personalize care delivery.

5.3.1 Functional needs

• Record healthcare journey details that might be forgotten or lost.
• Reflect, process, or understand healthcare situations in a personal way.
• Documentation for healthcare recovery or treatment.
• Provide useful additional or contextual information for healthcare team.

5.3.2 Clarifying questions

• Is there a way for patient to log, track, and reflect upon their healthcare journey?
• What tools are available that are appropriate to document this information?
• Is there a feedback loop that allows answering of questions or providing feedback to the healthcare team?

5.3.3 Practices

• Track progress and other items that may be useful for circle of care. This includes moods, emotion, symptoms, introspection, recognized personal patterns, etc. Practitioner should suggest what information might be helpful to track.
• Provide opportunity for individuals to respond to or ask questions based on their self-documentation.
• Individuals may need to be informed about storing and transmission of personal health information.
• If individuals are sending personal health information to healthcare team, the storage and transmission of that information may need to comply with privacy and security regulations and policies.
• Quantitative data paired with qualitative data can provide rich information. For example, a personal resting heart rate log is substantially more useful in context of a journal describing significant life events.

5.3.4 Software approaches

• Ability to create notes and annotations to allow patient to have further for discussions at follow up appointments.
• Curated list of consumer wearable devices, software, or services that may help facilitate tracking of personal data.
• Tools that help provide analysis of tracked data to improve understanding of personal data and help uncover new, or relevant information. For example, tracking blood sugar levels can reveal useful insight when visualized as a graph or animation.
• Where appropriate, consider ways for individuals to share information with their circle of care.

5.4 Understandable healthcare processes

How the healthcare system works, and the purpose of different healthcare entities and organizations (i.e., general practitioners, walk-in clinics, specialists, hospitals, emergency rooms, etc.) may be difficult to understand. For an individual, it also may not be clear what role they can play in their own healthcare, what reasonable expectations to have of the system, and the rights they have when engaging in the healthcare system.

5.4.1 Functional needs

• Big picture understanding of how the healthcare system works, and what it means for the individual.
• Understanding of the healthcare process they are currently engaged in.
• Communication of reasonable expectations of healthcare.
• Have enough understanding of the healthcare system to be able to navigate the system and advocate for their healthcare.

5.4.2 Clarifying questions

• Does the individual understand the healthcare system, and what to expect next on their healthcare journey?

5.4.3 Practices

• If it is possible ahead of time, provide an overview and explain the steps involved in the individual's healthcare journey.
• Equip individuals with tools and resources they might need for positive and productive healthcare engagements. This might include understanding their rights, learning to use the digital platform, terms, and vocabulary they might want to learn, and being able to specify any needs, preferences, and supports.
• During intake process, communicate any requirements or expectations in advance. Other related guideline: 2.4 Enhancing intake process to personalize service deliveryabove.

5.4.4 Software approaches

• Reminders of upcoming appointments can also include resources for patients to increase their healthcare understanding and literacy.
• If the individual's healthcare journey is well understood and documented, their progress could be represented in different ways using combinations of visuals, text, and audio. This timeline can also include upcoming appointments, past test results, doctor, and patient notes to give a wholistic view.

5.4.5 Other related guidelines

• 2.4 Enhancing intake process to personalize service delivery
• 2.6 Improving service by storing and sharing complimentary information
• 5.3 Encourage self-documentation and personal data logging

5.5 Establishing and expanding the circle of care

Establishing or expanding one's circle of care can help improve an individual's ability to cope and improve their healthcare outcomes. For some individuals this can be a challenge due to geography, seasons of life, social connections, and other factors.

5.5.1 Functional needs

• Support for coping and recovery – including cultural, mental, emotional, and physical support.
• Establish support for individuals who have difficulty seeking help.

5.5.2 Clarifying questions

• Can the individual help themselves or do they require assistance into seeking appropriate support?
• Are the resources provided regularly curated and updated for accuracy and relevance?

5.5.3 Practices

• Provide resources to self-serve options for relevant wholistic support outside of primary care settings (i.e., transportation, meals, therapy, etc.).
• Provide resources and connections to appropriate community support groups as part of patient follow-up and feedback process (other related guideline: 5.2 Provide extra opportunities for questions and feedback above).
• If individual has a circle of care, discover how they can be included in the treatment and / or recovery process.
• Proactively schedule follow-ups or check-ins with individuals.

5.5.4 Software approaches

• A collection of recommended support groups that can be searched and matched to an individual's context. Provide tools or metrics to help individuals judge relevance or match to personal needs.
• Tools to be able to edit, update, and add to the resources list.

5.5.5 Other related guidelines

• 5.2 Provide extra opportunities for questions and feedback

5.6 Welcoming and supporting caregiver involvement

Including caregivers and members of an individual's circle of care can be beneficial to both the practitioner and the recipient of care. Accommodating multiple people in a meeting can create some logistical and technical challenges but can also create opportunities.

5.6.1 Functional needs

• Individual requires support from a trusted companion, family member, or friend.
• Include circle of care in the decision-making process or provide them with important information.

5.6.2 Clarifying questions

• Is there an opportunity for patients to express their support preferences?
• Are there different options to accommodate additional supports?
• Are people in roles of support properly equipped or resourced to carry out their role?

5.6.3 Practices

• For different reasons, individuals may not be able to express or articulate their need for a support. Proactively ask if support is desired.
• Depending on the circumstance, have a flexible schedule to be able to accommodate members of the circle of care.
• Special attention may be needed for privacy and security with multiple attendees. Provide in advance any privacy or security information, and consent forms required (other related guideline: 3.1 Managing privacy in different contexts, above).
• Provide necessary information participants will need to connect and participate meaningfully. This is especially important if an attendee is to assist the recipient of care with support tasks (other related guideline: 1.2 Supports for using technology, 3.3 Interoperability with assistive technology, and 4.3 Technical literacy above) or is accompanying children.
• Establish a protocol for meeting facilitation (i.e. signals for questions / request to talk etc.) and consider an appointed facilitator to help with tasks like translation and cultural sensitivity.
• If a member of the circle of care is unable or not permitted to accompany individual consider other methods to include them in the process, such as using a journal or log to help share information (other related guideline: 5.3 Encourage self-documentation and personal data logging and 2.6 Improving service by storing and sharing complimentary information above).
• Offer different ways to having group consultations. If using remote meetings, some connection methods like video conferencing is easier for conversations but require a higher technical requirement. Telephone conferencing is a lower barrier but may require facilitation to ensure appropriate and productive engagement.

5.6.4 Software approaches

• Use a virtual meeting tool that can accommodate more than one remote participant.
• In a group setting, the software may need more privacy controls and some of those controls made available to the recipient of care for their comfort and protection. For example, have the ability to create temporary privacy by creating separate rooms, or moving participants into a holding area.
• Scheduling / booking system that allow individuals to include members of their circle of care in the invitation and appointment notifications.
• Have different meeting controls that help facilitate control / moderation and discussion like reactions and non-verbal communication tools.