1. Health Technology Assessment A helicopter view
Jean Mossman
European Federation of Neurological Associations
Working for people living with brain disorders

3. What is a health technology?
Prevention: childhood
vaccination
A diagnostic test: CT scan
A procedure:
laparoscopy
A device: cochlear
implants
A drug: insulin for diabetes

4. 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

5. 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.

7. Treatment costs for infusional vs oral 5FU
Oral
Drug cost
563
464
Administration
1500
113
Adverse events 22
131
One-off costs 12 7
Total
6255
2132

8. Patient costs for infusional vs oral 5Fu
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

9. Benefit of oral treatment

10. Treatments need to be assessed in the light of real world use:
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

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

12. 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

14. 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

15. 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

16. 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?

17. 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

18. Patient representative at NICE, March 2010
‘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

19. 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

20. 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

21. 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

22. 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

23. “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

24. Health Technology Assessment International
Patient/citizen interest group
LSE training course 2 – 4 June 2010, London
Contact