2. Intel Workshop/V2 Scenarios in the Governance of Patient Data in eHealth and telehealth Jenny Ure Social Informatics Cluster School of Informatics Univ. of Edinburgh

3. Intel Workshop/V2 1.sampling2. collecting3. coding4. cleaning5. linkage6. analysis7.use Recurring problem scenarios at each stage e.g. data linkage and patient confidentiality the human process the technical process

4. Intel Workshop/V2 Ex. 1:Linking Patient Data in eHealth Tension between value of data linkage in discovering new knowledge, and risks of data linkage that might allow discovery of patient identity Three scenarios. Three sets of risks. Who decides? Examples in bio-banking where data is held in many distributed sites and databases

5. Intel Workshop/V2 Scenario 1 - Role Based Access Software Getting access is easy Monitoring misuse is hard e.g. data linked for particular projects remains on PCs and laptops after use IT manager usually decides early in process M. McGilchrist (In press): GenerationScotland Genomics Project

6. Intel Workshop/V2 Scenario 2: An additional technical layer to prevent identification? Additional layer of software, to check for risks arising from linkage between particular datasets that might allow patient identification (age, address etc) M. McGilchrist (In press): GenerationScotland Genomics Project

7. Intel Workshop/V2 Scenario 3: Local control of local data Local linkage assessment panel Using local knowledge and agency to assess risk, and enable intervention Combining this with role in managing data quality checks Data quality and data confidentiality is enhanced Local community decides M. McGilchrist (In press): GenerationScotland Genomics Project

8. Intel Workshop/V2 Ex.2: Scenarios in Use of Tele-monitoring Data Tele-monitoring data can be used to coordinate diagnosis and intervention/care in very different ways. Each scenario reconfigures risks, roles, rights and resources differently between patients, carers, GPs, nurses and other staff Which scenario is adopted? Who decides? When? Where? Is there a process for stakeholder representation in this new patient doctor compact?

9. Intel Workshop/V2 Scenario (V.)1 Telemetric monitoring using standard symptom scores to trigger early intervention/reduce costly admissions Critical assumptions about the relationship between standard scores and the processes of diagnosis and intervention

10. Intel Workshop/V2

11. Problem: ‘Standard’ scores not reliable index of how ill patients are in practice Local factors such as activity, anxiety, environment, affect breathlessness for example GPs and nurses need to get/use patient/context specific information to make sense of scores

12. Intel Workshop/V2 ‘You really need a sort of second layer (VC) to make sense of the scores, and decide if they need a visit. M’s scores are OK but I know..because I spoke to her that she’s really bad. Others score high and they’re fine.

13. Intel Workshop/V2 Scenario (V.2) Stage 1 : Tele-monitoring to highlight potential risks Stage 2: GP/nurse uses video-conferencing facility to see patient in home environment to interpret the threshold scores in context, and negotiate an appropriate intervention with them

14. Intel Workshop/V2 Problem: responding to much higher levels of at risk patients than expected Clinical and legal risks/ implications if delays occur between patient, call centre, surgery loop (now a transparent audit trail in essence) Clinical issues as patients get antibiotics twice as often as a result of monitoring (Now an unknown risk factor) Workload implications for GPs

15. Intel Workshop/V2 Scenario V3 Scores sent direct to GP surgery with no call centre involvement, as potential source of delay Tele-monitoring to highlight potential risks but patient has responsibility for contacting surgery and scores sent direct to GP surgery GP/nurse and patient video- conferencing session to interpret scores in context, and agree satisfactory diagnosis / intervention Rapid response nurse team have responsibility for responding quickly and appropriately

16. Intel Workshop/V2 The initial assumption is not borne out in practice Different possible scenarios, different alignments, different reconfigurations of costs, risks, benefits. The process of collecting and feeding back stakeholder views both maps and informs the process The final design decision reflects a range of economic, legal and political factors as much as design ones How are patients and other stakeholders represented in a digital reconfiguration of the care landscape?

17. Intel Workshop/V2 The eHealth Vision of secure data sharing? Still more of a vision than a reality ! Needs a new process for digital data sharing