3What is a health technology? Prevention: childhoodvaccinationA diagnostic test: CT scanA procedure:laparoscopyA device: cochlearimplantsA drug: insulin for diabetes
4Health 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
5Why 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.
7Treatment costs for infusional vs oral 5FU OralDrug cost563464Administration1500113Adverse events22131One-off costs127Total62552132
8Patient costs for infusional vs oral 5Fu 3 days in hospital each fortnightAdverse eventsDiscomfortShortage of veinsLoss of dignityBoredomFrustrationLittle time for real lifeOralOne outpatient visit every three weeksAdverse eventsPills to take
10Treatments 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 qualityTreatments need to be assessed in the light of real world use:At least 50% of patients don’t take their medication as prescribedAbout 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’.
12What do patients want from HTA? That the impact considered is broader than the health serviceStaying in the workplaceStaying independentStaying active and mobileThat the impact of an illness and its treatment on the patient and family is understoodThat illness is given a priority to reflect its burdenThat a true reflection of a drug’s value is assessedThat the assessors accept that all evidence has been generated with a particular view in mind
14Where can patient groups have input? ScopeDefines what will be addressed by the HTAAssessmentReviews the available evidence and develops models where there is noneAppraisalMakes decisions based on the assessmentE.g. NICE decides whether a technology should be made available in England
15Collecting patient evidence Collect information on the experience of an illness from a range of sources, for example:Enquiries to your organisationSurveysFocus groupsDiscussions at self-help and support groups, or hospital clinicsPublic presentations at official meetings, on websites or in the media
16Checklist 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?
17Checklist 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 workSelf management of the illnessHome lifeSocial life and relationships
18Patient 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
19Presenting 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 eyeHave a notepad so you can write down what you want to say in response to anything said in the discussionIf you are anxious, rehearse in your head how you will say somethingAcknowledge that you have understood the points being made but, if you do not agree, explain that you do notBe polite but persistent if you want to make a pointUse brief statements that are to the pointAvoid 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
20HTA Summer School for patient groups Collaboration between EFNA and London School of EconomicsSponsored by 16 companiesWorking for people living with brain disorders
21Participants 27 participants from 11 countries National organisations Neurology and oncologyChief Executive or Policy LeadGood ability in EnglishOrganisation has resources to participate in HTA
22Conclusion HTA is here to stay ‘Nothing about us without us’ Find ways to contributeRemember ‘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
24Health Technology Assessment International Patient/citizen interest groupLSE training course 2 – 4 June 2010, LondonContact