1. Inspectorate of Health and Socialcare
Lena Weilandt
Inspectorate of Health and Socialcare
Department of Development and Analysis
Stockholm 28th September 2016
Macronivå:
Tillsynspolicy, Nationella riskanalysen ( tex,Patientenkäten )
Mesonivå:
Dialogforum med patient ovh brukarföreträdare, Särskilda analysrapporter (tex av EKPSL)
Aggregerad sammanställning av tex barnintervjuer, bra underlag för återkoppling till högsta ledningen såväl som för verksamheterna och de intervjuade barnen.
Micronivå:
Involvera pat/brukare i den direkta inspektionen tex via intervjuer, enkäter, fokusgrupper. Kan ske redan inledningsvis vid designen av tillsynen, i samband med inspektionen och återföringen av resultatet.

2. Welcome!

3. Working group Patient and client involvement in supervision
Delagates: Bulgaria Denmark Finland Iceland Latvia Netherlands Norway Sweden Wales

4. Health and Social Care Inspectorate, Sweden
A regionalized organisation
New government agency since 2013
Each year -450 inspectors in six regional divisions
Supervise 21 county counsils respnsible for the healt care
And 290 munipalicies responsible for social service and elderly care
About  supervision decisions
About inspections 
About decision concerning the issuing of permits

5. Presentations

6. Participants:
1. Lena Weilandt (Chair), Sweden; 2. Tove Gemzell, Sweden; 3. Denmark (NBSS); 4. Denmark (NBSS)( Anne Lund Frydensberg or Henrik Frostholm or Else Lund Frydensberg or Hanne Sognstrup); 5. Birgir Jakobsson, Iceland; 6. Diana Dumina, Latvia; 7. Charlotte Hjort, Denmark (DPSA); 8. Torsten Larsen, Denmark (DPSA); 9. Sorien Kleefstra, The Netherlands(IGZ); 10. Renee Bouwman, The Netherlands (NIVEL); 11. Bente Smedbråten, Norway 12. Alexandrina Gigova, Bulgaria; 13. Jooske Vos, EPSO; 14. Mari Murel, EPSO; 15. Hanna Ahonen, Finland; 16. Riitta Aejmelaeus, Finland. David Frances, Wales (not present in Stockholm);

7. Earlier work done in EPSO

8. Overview of former EPSO working group activities
Jooske Vos, EPSO (European Partnership for Supervisory Organisations in health services and social care),
a co-operation between supervisory bodies in Europe

9. 1. definition of ‘user participation’
until No definition
No definition was used as we thought the meaning of the term was completely clear; this proved to be wrong (lots of different meanings in various countries).
Since the following definition :
‘User participation’ is part of a policy to actively involve users of health care or social care (or their relations),
to include their opinions in the policy of the supervisor,
with the aim to improve the quality of health care or social care.

10. 2. Timeline: How and when did EPSO discuss the consumer perspective?
2008 Start by Flanders, supported by EPSO inspectorate
EPSO complaints working group, Brussels;
May 2010 Netherlands Johan Leegemaate Managing unreasonable complaints, Tallinn;
Autumn 2011 engagement of children, young people and their families, driving improvement (Munro review 2010), Belfast;

11. 3. Timeline How and when did EPSO discuss the consumer perspective
3. Timeline How and when did EPSO discuss the consumer perspective? (Timeline)
Spring 2012 Service users at the heart of inspection / involving people in regulation, Paris;
Autumn 2012 user-participation questionnaire, findings, Utrecht;
Spring 2013 Overview of practices based on interviews with 9 EPSO ‘countries’, Brussels;

12. 4. Timeline How and when did EPSO discuss the consumer perspective?
Autumn 2013 Francis report
Autumn 2014 : central position for patients/users. Service User Involvement in Mental Health Services – by Shari McDaid, Mental Health Reform;
Follow up discussions on Francis report and user involvement

13. 5. Timeline How and when did EPSO discuss the consumer perspective?
Autumn 2015 inquiry by Sweden ( Janna Kokko)to regarding analisys of patient experiences in health care a new EPSO working group on user-participation/ client involvement;
Spring 2016 Invitation in Kosovo to start a new working group chaired by Sweden on user participation/ client involvement;

14. 6. Timeline How and when did EPSO discuss the consumer perspective?
Autumn 2016 Stockholm : Start of a new working group on user participation /client involvement in Stockholm chaired by
Lena Weilandt with participants from:
Sweden,
Norway
Finland
Bulgaria
Denmark
Latvia
Iceland
Wales
Netherlands

15. More information See www.epsonet.eu Questions to: Jooske Vos,
EPSO, Benoordenhoutseweg 21-23, Den Haag
Tel:
Mob:

16. How can the supervision be strengthen by patient and user involvement?
What signifies good practice in this aspect?
Are there negative experiences and challenges, when does it not contribute?
Invitation from the working group chair
In 2012 Northern Ireland took the lead in a working group for user participation in a supervisory context and in 2013 the group presented a
an inventory of the existing practices and approaches to patient and user participation in nine inspectorates within the EPSO community.
The inventory showed that some countries have a tradition of involving patient and users while other still mainly have this as an intention on policy level.
The time has come to take the next step – to learn more about when and how to use patient and user involvement

17. Expectations from the working group
Experience to improve our work style
Means and methods for recognizing meaningful and valid information from the general noise
We would like to discuss best practice - effective methods for user participation in supervision
We want to learn more about how to systematically involve patients in supervision and to discuss possible advantages and disadvantages. Furthermore, it is important to know what approach will have greatest effect in order to improve the service.
Share experiences and good practices
Share knowledge and experiences, and to think about in what way research could help
I hope to learn from other inspectorates about their experiences with involving patients in supervision, and if there are other methods or sources to give the patients a voice in supervision

18. Result from the questionnaire
Health Inspectorate of Latvia Valvira , Finland The National Board of Social Services , Denmark Directorate of Health, Iceland Health and Social Care Inspectorate, Sweden NIVEL (research on Dutch Inspectorate) Dutch Health care Inspectorate EPSO

19. 1. Is the patient perspective a central part in your policy for supervision of healthcare? 5/6 Is the service user perspective a central part in your policy for supervision of social care? 4/5

20. 2. Do you use patient complaints and/or other structured information sources that describes patient experiences, when planning your supervisory activities in healthcare? 6/6 to some extent or always Do you use user complaints and/or other structured information sources that describes user experiences when planning your supervisory activities in social care? 5/5 to some extent or always

21. 3. Do you actively gather information from patients and relatives about their experience of the health services when carrying out supervision in healthcare? (e.g. Using questionnaires, interviews with patients etc.) 1/6 to some extent by using surveys, interviews, patient ratings Do you actively gather information from users and/or relatives about their experience of the services when carrying out supervision in social care services? 2/5 always, for examples interviews with children 3/5 No

22. 4. Do you have patients as a part of the supervisory team when carrying out supervision in health care? (e.g. Experts by experience) 5/6 No 1/6 Yes, layman inspector, mystery guest Do you have users and/or relatives as a part of the supervisory team when carrying out supervision in social care? 4/5 No 1/5 Yes, in a pilot

23. 5. If you hold meetings with organisations to give feedback after a supervisory activity in health care, do you then also invite patient representatives? (e.g. Patient organisations, patients) 2/6 Yes pilots, openly published reports 4/6 No If you hold meetings with organisations to give feedback after a supervisory activity in social care, do you then also invite user representatives? (e.g. Organisations for service users, service users)

24. Next step Focus Timeline Participation? Share experiences?
How to analyse information
Children, elderly –
Risk detection – opinion from pat, users how to use?
Fokus on specifik risk topics?
Best practice?-
Patient involvement quality development (methods)
Lessons learned?
Legal aspects
Research?
Timeline

25. And in the daily work Plan Riskbased approach
Using sources showing results for patient and careservis users and their experiences of delivered care and sevices (internal/external)
Patient, user as a partner in risk-detection
Do – share experiences on how to:
Listen to patients and users voices and experiences from supervision activities
Inventory of Methods pro and cons
Best practice- what is this, are there prerequisites that has to be in place, how do we identify patient
Target groups, different needs, different approaches
Study
Analys the input from patient and users together with other sources – what does this tell us?
Act
How can we lift the patient and users views and experiences in feedback and dialogue with those supervised
Transparancy in communication of the results
Communication different focus,/ media, patiet/users, proffessionals
Research
What does research say? Can we together collect more data and knowledge?
Added value – be able to descibe what is
safety risk, experiences of service
And in the daily work

26. Identified cause for supervision
Best practice
Identified cause for supervision
Plan Do
Study act
Evaluate
Better care

27. THANK YOU