NICE EVIDENCE SYNTHESIS WORKSHOP (COSTING, QOL, PATIENT INPUT) Flashcards
Health Technology Assessment (HTA) and Economic Evaluation (EE) studies are primarily concerned with:
- estimating the additional costs and the additional health benefits of a new treatment compared with the current treatment or practice
- knowing these quantities would allow one to calculate an incremental cost-effectiveness ratio (ICER) and to work out whether the new treatment is cost-effective compared with the existing treatment
EQ 5D 3L
EQ-5D is a standardised measure of health-related quality of life developed by the EuroQol Group to provide a simple, generic questionnaire for use in clinical and economic appraisal and population health surveys.
The descriptive part of the EQ-5D instrument aims to present each particular health state in terms of a 5-digit number (for example, 11213).
DIMENSIONS: mobility, self-care, usual activities, pain and discomfort, and anxiety and depression
Each digit corresponds to one of the 5 dimensions in the instrument (i.e. the first digit relates to ‘Mobility’, the second to ‘Self-care’, an so on). In the earlier and more established version of the instrument, each dimension has 3 level, thus it takes values from 1 to 3 and hence the name EQ-5D-3L.
Each level (1-3) expresses the ‘severity’ of problems experienced. One represents ‘no problems’, 2 represents ‘some problems’ and 3 represents ‘severe problems’.
Altogether, each 5-digit number represents a unique health state out of 243 possible states .
- there is a newer version with 5 levels for each dimension
Patient and public involvement (PPI) in the NICE HTA process, 2001 and 2008 decisions
2001: minimum of two lay members, as full voting members of the committee, “who play a crucial role by providing a patient/carer/public perspective to the discussions and decisions taken”
2008: lay member as a member of the “lead team”
Lay people - patients, people who use services, their families, carers and members of the public . Definition may vary across the organisation.
% OF PATIENT EXPERTS WHO BELIEVE IT IS EASY FOR PATIENT EXPERTS TO GET INVOLVED AT NICE?
20%
PPI IN NICE: VIEWS FROM THE PUBLIC PERSPECTIVE?
Extracts from CHE Working group’s Report: (Centre for Health Economics)
Whilst relatively confident in their roles in relation to NICE, very few patient organisations saw involvement (by themselves or patient experts) with NICE as easy, beyond a relatively superficial level.
The complexities of the decision-making process, by their nature, meant that involvement can be very demanding and time consuming.
Similarly, whilst there are lots of opportunities for the public and patient organisations to get involved in developing guidance, many raised concerns around whether their voices were being heard at key decision-making stages. Essentially, if there aren’t mechanics in place to consider patient evidence then the opportunity isn’t adequate.
Following the same theme, patient organisations felt NICE was transparent on a relatively superficial level. There are open meetings and public documentation, but organisations felt it lacked a level of detail that would enable them to truly understand decision making.
98% OF PATIENT EXPERTS WOULD LIKE MORE FEEDBACK ON THE IMPACT OF THEIR EVIDENCE
98% OF PATIENT EXPERTS WOULD LIKE TO KNOW HOW PATIENT EVIDENCE TRANSLATES INTO QOL MEASURES
CHE (CENTRE FOR HEALTH ECONOMICS) RECOMMENDATIONS FOR PPI IN NICE?
Many noted that patient experts were often overwhelmed by the amount of reading and technical language involved. Plain English summaries, and guidance on areas/questions that are most relevant to patient experts, would be welcomed.
Most would also like to see additional guidance, training and support for patient experts from NICE. With a few suggestions that NICE should offer emotional support and counselling for patient experts where needed given the significant emotional burden they face.
PARTICIPATION LADDER
TYPE OF PARTICIPATION, FROM LEAST TO MOST INVOLVEMENT:
EXCLUDE (NO INVOLVEMENT IN ANY WAY, CONSUMERS ARE UNABLE TO ACCESS SERVICES OR SYSTEMS OR DECISION MAKING)
COERCE (GOVT/SECTOR EXPECT CONSUMERS TO ACCEPT THE CHANGES MADE ON THEIR BEHALF, PEOPLE ARE PASSIVE RECIPIENTS)
EDUCATE (GOVT/SECTOR TEACH CONSUMERS ABOUT WHAT THEY’VE DECIDED SO PEOPLE KNOW WHY IT’S GOOD FOR THEM, PASSIVE RECIPIENTS)
INFORM (GOVT/SECTOR TELL CONSUMERS ABOUT THEIR DECISIONS AND MAY PROVIDE OPPORTUNITY FOR FEEDBACK, WHAT IS THEN DONE WITH THE FEEDBACK VARIES)
CONSULT (GOVT/SECTOR ASK CONSUMERS WHAT THEY THINK, AND THIS BECOMES ONE OF MANY CONSIDERATIONS, PARTICIPATION WITHOUT POWER, GOVT/SECTOR VALUE THEIR OWN EXPERTISE MOST, LIMITED OPPORTUNITY FOR PEOPLE TO ‘HAVE THEIR SAY’)
ENGAGE (GOVT/SECTOR INVOLVE CONSUMERS IN THINKING THROUGH SOME, MANY OR ALL ASPECTS OF DECISIONS, MOST COMMONLY SEEN BY HAVING A MINORITY OF TEAM MEMBERS BE CONSUMERS, PARTICIPANTS WITH LESS POWER AND RESOURCES THAN OTHERS, ONE OF MANY STAKEHOLDERS)
CO-DESIGN (GOVT/SECTOR WORKS IN PARTNERSHIP WITH SERVICE USERS TO ‘PLAN, DESIGN, DELIVER OR EVALUATE THE PROBLEM ND SOLUTION’, COLLABORATIVE PARTNERING, GOVT/SECTOR SHARE THE POWER WITH THE PEOPLE WHO USE SERVICES)
CO-PRODUCTION (GOVT/SECTOR WORKS IN PARTNERSHIP WITH SERVICE USERS TO CO-PLAN AND DEFINE THE PROBLEM OR NEED, CO-DESIGN THE SOLUTION, CO-DELIVER THE SERVICE AND CO-EVALUATE IT, CONSUMERS FORM A MAJORITY OF COMMITTE AND PROJECT GROUP MEMBERSHIPS, CONSUMERS ARE PART OF DELIVERING AND EVALUATING THE SOLLUTION, COLLABORATIVE PARTNERING, EQUAL VALUE OF CONSUMERS AND EXPERTS)
CONSUMER-LED (CONSUMERS LEAD THE PROCESSES, WITH OTHERS, TO DEFINE THE PROBLEM OR NEED, DESIGN AND PROVIDE THE SOLUTION, DELIVERY AND EVLUATION, GOVT/SECTOR SUPPORT WITH A RANGE OF RESOURCES, CONSUMERS EXPERTISE MATTER THE MOST)
CONSUMER OWNED (CONSUMERS DEFINE THE PROBLEM, PROVIDE SOLUTION, DELIVERY AND EVALUATION, GOVT/SECTOR SUPPORT WITH FUNDING, CONSUMER EXPERTISE MATTERS THE MOST)
GOOD PRACTICE FOR CONSUMER INVOLVEMENT, REGARDLESS OF PARTICIPATION LEVEL
- RELEVANCE (CONSIDER WHAT KIND OF LIVED EXPERIENCE IS RELEVANT; A GOOD QUALITY PROJECT WILL INCLUDE A COLLECTIVE MIX OF CONSUMERS COVERING ALL ASPECTS NEEDED)
- RELEVANCE AND CONSUMERS AND CARERS (IF A PROJECT IS RELATED TO SERVICES EXPERIENCED BY CONSUMERS, THEN CONSUMERS MUST BE INVOLVED & CONSUMERS AND CARERS ARE NEVER!!!!! INTERCHANGEABLE)
- CONFLICTS OF INTEREST (BE AWARE OF SUBJECTS AND ISSUES WHERE THERE ARE PARTICULAR CONFLICTS OF INTEREST, OR HIGH DEGREES OF SENSITIVITY BETWEEN CONSUMERS AND CARERS)
- PAY FAIRLY (RECOGNISE THAT CONSUMERS ALSO HAVE CRTAIN LEVELS OF EPERTISE AND QUALIFICATIONS, NOT ALL CONSUMERS SHOULD BE PAID AT THE SAME RATE)
- TIME (ALLOW REAONABLE TIME TO SOURCE PEOPLE AND ALLOW TIME FOR PRELIMINARY READING)
- DIVERSITY ( SEEK A DIVERSITY OF CONSUMER EXPERIENCES AND VIEWS, IN PARTICULAR AIM TO INCLUDE: BOTH CURRENT AND PAST SERVICE USERS, DEMOGRAPHIC, CULTURAL AND IDENTITIY DIVERSITY, DIVERSE EXPERIENCES, BOTH POSITIVE AND NEGATIVE, INCLUDING THE CHALLENGING ONES. PEOPLE WITH EXPERTISE IN CONSUMER PERSPECTIVE, PEOPLE WITH RELEVANT KNOWLEDGE OF KEY CONSUMER ISSUES)
- POWER (BE AWARE OF AND ENSURE APPROPRIATE POWER DYNAMICS)
- INFORMED (PROVIDE ALL RELEVANT BACKGROUND INFO)
- ACCESSIBILITY (TO ALL INFO AND FACILITIES)
- DISTRESS (FLAG TRIGERRING CONENT, AVOID DISCRIMINATORY APPROACHES)
- CLOSE THE LOOP (PROVIDE FEEDBACLK ON HOW CONSUMER PARTICIPATION CONTRIBUTED)
Four principles for meaningful involvement of patients and the public in health and social care research according to The Health Research Authority, UK:
Principle 1: Involve the right people
Principle 2: Involve enough people
Principle 3: Involve those people enough
Principle 4: Describe how it helps
