Health Technology AssessmentA helicopter view

Jean Mossman

European Federation of Neurological Associations

Working for people living with brain disorders

Prevention: childhood vaccination

What is a health technology?

A drug: insulin for diabetesA device: cochlearimplants

A diagnostic test: CT scan A procedure:laparoscopy

Health Technology Assessment (HTA)

• HTA is a multidisciplinary process that summarises information about the medical, social, economic and ethical issues related to the use of a health technology in a systematic, transparent, unbiased, robust manner

Why is HTA important for patients?HTA can provide information to support a range of decisions, for

example:• Health authorities thinking of putting in place primary or secondary

prevention programmes, such as screening programmes;• Health care payers deciding which technologies (e.g., operations,

drugs) should be paid for;• Health care organisations deciding whether to exclude or implement

new technologies such as modern types of radiotherapy;• Health care companies producing new products that may need to

demonstrate a level of benefit for the product to justify the cost.

HTA can also be used by individuals, including:• Patients and carers deciding which of the available treatment

options best meets their needs;• Members of the public thinking of taking part in a screening

programme.

Treatment costs for infusional vs oral 5FU

Infusional

£

Oral

£

Drug cost 563 464

Administration 1500 113

Adverse events 22 131

One-off costs 12 7

Total 6255 2132

Infusional• 3 days in hospital

each fortnight• Adverse events• Discomfort • Shortage of veins• Loss of dignity• Boredom• Frustration• Little time for real life

Oral• One outpatient visit

every three weeks• Adverse events• Pills to take

Patient costs for infusional vs oral 5Fu

Benefit of oral treatment

Only patients and their caregivers know precisely how a disease impacts on daily life and how specific treatments or management strategies can influence its quality

Treatments need to be assessed in the light of real world use:– At least 50% of patients don’t take their medication as

prescribed– About 30% of patients interrupted treatment for at least

30 consecutive days in their first year on Glivec

• Saying you were sick five times each day is less meaningful than explaining that this means you cannot manage to go to work, or that it happens so quickly that you cannot make it to the toilet and have to clean up after yourself.

• Recording that the fatigue caused by existing treatments is so severe that it means you have to lie down all day and so cannot look after your children.

• Explaining that a pill is more acceptable than an intravenous treatment not just because it means less trips to hospital but because it allows you to continue living a more normal life.

• Describing the effect a treatment has on your daily life – such as, ‘it makes it impossible to stand on my feet all day, which means I cannot work’.

‘Experiential’ evidence shows what an illness and a treatment mean in real life

What do patients want from HTA?

• That the impact considered is broader than the health service– Staying in the workplace– Staying independent– Staying active and mobile

• That the impact of an illness and its treatment on the patient and family is understood

• That illness is given a priority to reflect its burden• That a true reflection of a drug’s value is assessed• That the assessors accept that all evidence has been

generated with a particular view in mind

Where can patient groups have input?

• Scope– Defines what will be addressed by the HTA

• Assessment– Reviews the available evidence and develops

models where there is none

• Appraisal– Makes decisions based on the assessment– E.g. NICE decides whether a technology

should be made available in England

Collecting patient evidence

• Collect information on the experience of an illness from a range of sources, for example:– Enquiries to your organisation– Surveys– Focus groups– Discussions at self-help and support groups,

or hospital clinics– Public presentations at official meetings, on

websites or in the media

Checklist for patient evidence

• Details of the benefits and risks of the technology: what specific benefits does it provide and at what ‘cost’ to patients and carers?– What benefits does it bring?– How do the benefits impact on patients’ daily life?– How do the benefits compare with those of existing treatments?– What unwanted effects does the technology cause?– How tolerable are they?– How do they impact on the patient’s daily life?– How do the unwanted effects compare with those of other

treatments?– What would happen to patients if there was limited access to the

technology?

Checklist for patient evidence (2)

• How easily does the technology fit into patients’ daily life?– Do they have to go to hospital to receive it?– Do they have to take extra time from work?– Does the technology prevent them from doing anything routine?– Is anyone else affected, such as a family member accompanying

the patient?

• How the illness and the technology being tested impact on:– The ability to work– Self management of the illness– Home life– Social life and relationships

‘It was deeply frustrating. I didn’t feel as though they were listening. The

chairman moved on every time I drew breath and they kept going on about deafness, which is completely

irrelevant.’

Patient representative at NICE, March 2010

Presenting patient evidence in person

• Below are some general assertiveness methods that you can use to make you more comfortable in the meeting:– Try to sit in the line of the Chairman’s eye– Have a notepad so you can write down what you want to say in

response to anything said in the discussion– If you are anxious, rehearse in your head how you will say

something– Acknowledge that you have understood the points being made

but, if you do not agree, explain that you do not– Be polite but persistent if you want to make a point– Use brief statements that are to the point– Avoid using expressions such as ‘you must’ but introduce your

comments in a non-threatening way, e.g. ‘people with this illness would prefer ….’

– If you feel that your comments have been misunderstood, make the same point but in a different way

HTA Summer School for patient groups

Collaboration between EFNA and London School of Economics

Sponsored by 16 companies

Working for people living with brain disorders

Participants

• 27 participants from 11 countries– National organisations

• Neurology and oncology

– Chief Executive or Policy Lead

– Good ability in English– Organisation has

resources to participate in HTA

Conclusion

• HTA is here to stay

• ‘Nothing about us without us’

• Find ways to contribute

• Remember ‘distress is not enough’

• Patient involvement means a two way process

“What is the point of patients and patient groups trying to contribute to health technology assessment if there is absolutely no evidence that their perspective is taken into account?”

Need transparency about where and how the patient evidence influences the decision making in HTA if we want patient groups to participate

• Health Technology Assessment International– Patient/citizen interest group– www.htai.org

– LSE training course 2 – 4 June 2010, London– Contact jean.mossman@btinternet.com