1. May 2010 Berlin Patient perspectives Alison Bowes University of Stirling

2. May 20102 Berlin In this domain Outcomes = patient’s (and relatives’) perceptions and satisfaction Not easy to define, as includes many aspects such as: – Feelings, comfort – Interaction with professionals – Convenience, timeliness – Overall satisfaction – Preference as compared with face to face interaction – Privacy and confidentiality – Professionals’ competence and/or personal manner – Views about the technology itself – Informativeness of professionals – Usefulness/potential for future use – Self efficacy and empowerment An evaluation has to specify which aspects are important and therefore which will be investigated.

3. Choosing outcome measures Standard or bespoke instruments? Need to be specific and reportable Need to use standard instruments where these are appropriate Criterion: what do we need to know, given the nature of the intervention? Key aspects from MAST are Satisfaction or acceptance Understanding of information Confidence Ease of use Access Empowerment and self-efficacy May 20103 Berlin

4. Examples from literature Qualitative methods: – Interviews (semi structured) – Diary keeping – Patients record and self report their symptoms Quantitative methods – Questionnaires to patients – Standard satisfaction survey (e.g. Group Health Association of America Consumer Satisfaction Survey) – Standard health measures (e.g. SF36 – a generic health and well-being scale) – Condition related standard measures (e.g. DQOL [Diabetes], DemQOL [Dementia] and others) Mixed methods – Selection of qualitative and quantitative tools May 20104 Berlin

5. Collecting data on patient perceptions Consider what criteria need to be considered Design a systematic approach to data collection Integrate the collection of satisfaction data within the system Ensure that data can be analysed readily No need to re-invent the wheel (see Appendix to MAST, which includes many suggestions) May 20105 Berlin

6. Examples from literature Surveys which combine standard and bespoke measures (e.g. standard satisfaction measures with specific questions about access to services, when intervention was delivered in rural areas) Mixed methods data collection (e.g. in teleoncology services, some quantitative questionnaire work, but more open-ended interview data which is helpful where patients and their families are in varied circumstances and locations) Patients keep a record of their symptoms (e.g. this was frequently used in telepsychiatry) May 20106 Berlin

7. Handy hints Focus on key aspects (less may be more…..) Remember the key criteria Satisfaction or acceptance Understanding of information Confidence Ease of use Access Empowerment and self-efficacy Integrate data collection with other procedures Allow for the unexpected (e.g. differences between patients, unintended results) Make sure that the data are used to inform the intervention See patients as partners in care, who contribute to successful outcomes May 20107 Berlin

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