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

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Presentation on theme: "Health Technology Assessment A helicopter view Jean Mossman European Federation of Neurological Associations Working for people living with brain disorders."— Presentation transcript:

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

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

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.

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7 Treatment costs for infusional vs oral 5FU Infusional £ Oral £ Drug cost Administration Adverse events22131 One-off costs127 Total

8 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

9 Benefit of oral treatment

10 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 dont take their medication as prescribed –About 30% of patients interrupted treatment for at least 30 consecutive days in their first year on Glivec

11 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

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 drugs value is assessed That the assessors accept that all evidence has been generated with a particular view in mind

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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 patients 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 It was deeply frustrating. I didnt 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 Chairmans 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 –www.htai.org –LSE training course 2 – 4 June 2010, London –Contact


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