Week 8: Patient perspectives and Experiences

Question 1

Where could we collect data for patients’ perspectives?

Answer 1

• patient interviews
• focus groups
• surveys
• systematic review

Question 2

What two ways can patient perspectives be included in HTAs?

Answer 2

1. by providing evidence about their experiences and preferences
2. through participation in the HTA process

Question 3

What are 4 patient-oriented concepts directly and indirectly related to HTAs?

Answer 3

1. Patient-centered care
2. patient -centered outcomes
3. patient-reported outcomes
4. patient-centered outcomes research

Question 4

What type of thinking was traditional diagnosis based on?

Answer 4

disease-centered thinking
- disease first then patient

Question 5

What type of thinking was overall diagnosis based on?

Answer 5

patient-centered thinking
- patient first then disease

Question 6

What does the “patient-centered care” of patient oriented concepts consist of and what topics are included ?

Answer 6

• where everything surrounds the patient and puts them at the forefront of their own health care
• topics of:
  1. disease and illness experience
  2. whole person
  3. common ground
  4. patient-doctor relationship

Question 7

How is patient-centered care evaluated in Canada two way ?

Answer 7

1. use “patient perception of Patient- Centeredness ‘ (PPPC):
   questionnaire
   measures perceptions of patient-centered care during last visit with a family physician
2. use “Consultation Care Measure” (CCM)

Question 8

How can patient-centered care concept affect HTA?

Answer 8

impact on safety, effectiveness and related health care outcomes
How?
- listening, educating, and integrating patients into healthcare decision-making
- integrating patient preferences into regulatory decision making —> INCREASES EFFICENCY

Question 9

What does the “patient centered outomes” of patient oriented concepts consist of?

Answer 9

• outcomes that patients experience across a variety of real world settings (survival, QoL, symptoms, pain, patient satisfaction, etc…)
• can be assessed at generic level of disease-specific level

Question 10

What does the “patient-reported outcomes” of patient oriented concepts consist of?

Answer 10

outcomes that are…
-self-reported by patients (or on behalf by caregiver)
- obtained from patients by an interviewer without interpretation or modification by clinician

Question 11

What does the “patient-centered outcomes research” of patient oriented concepts consist of?

Answer 11

generates evidence comparing the impact of health care on patient centered outcomes

wide variety of methods (practical RCTs, insurance claims, systematic reviews, etc..)

Question 12

What questions do we ask ourselves in patient-centered outcomes research?

Answer 12

1. Given my personal characteristics, conditions and preferences, what should I expect will
   happen to me?
2. What are my options and what are the benefits and harms of those options?
3. What can I do to improve the outcomes that are most important to me?
   4.How can clinicians and the care delivery systems they work in help me make the best decisions
   about my health and healthcare?

Question 13

How can patient participation be involved in the HTA process?

Answer 13

• involved in value judgements and decisions

examples:
- topics
- research questions (answered or not)
- evidence to include
- importance of findings
- how the findings should inform recommendations

Question 14

Why is patient involvement in HTAs important?

Answer 14

1. patients have unique knowledge –> can inform HTAs!
2. improves transparency and openness in public policy –> very democratic!

SHOULD BE TAKEN FROM THE PEOPLE WHO HAVE THE EXPERIENCE OF THE DISEASE!!!

Question 15

What are the 3 patient engagement mechanisms based on the flow of information?

Answer 15

1. Communication
2. consultation
3. participation

Question 16

What is “communication” in Patient Engagement Mechanisms”?

Answer 16

information flows from the HTA organization to patients.

Question 17

What is “consultation” in Patient Engagement Mechanisms”?

Answer 17

when information flows from the patients to the HTA organization

Question 18

What is “participation” in Patient Engagement Mechanisms”?

Answer 18

when information is exchanged between the organization and patients

-flow of information is 2-way

ex: citizen juries

Question 19

What are some issues with involving patients in the HTA process?

Answer 19

• patient involvement can be “tokenistic” (more symbolic than effective, kind of just needed someone to be here)
• quality of process relies on participants’ ability to contribute competently,
  and on the establishment of “fair deliberation” procedures
• what catches the patient eyes will get them to engage based on what the HTA organization has to offer (Early involvement, training, choice of an appropriate participation method and support from HTA)

Question 20

What are the issues of people who want to involve patients in HTA process but cannot?

Answer 20

• lack of organizational capacity to involve patients
• Extensive time requirements
• Lack of agreed-upon methods for involving patients in HTA
• Lack of clarity about when in the HTA process to involve patients
• Lack of funding
• Concerns regarding the scientific credibility of patient evidence

Question 21

Go to lecture slides for refresher, go to google doc for CADTH readings