Patient and Family Participation in Healthcare design and Delivery from a medical and a mental healthcare perspective

1. Patient and Family Participation in Healthcare
Design and Delivery from a medical and a mental
healthcare perspective
Miss Lucy Whiston, Prof Joe Barry and Assistant Prof Catherine Darker
Lucy Whiston
Adelaide PhD Candidate/Irish Research Council Scholar,
Department of Public Health and Primary Care, TCD.
27th May 2016

2. Trinity College Dublin, The University of Dublin
Examples of Participation
Representation on boards Deciding on areas of research
Suggestion boxes Development of information material
Patient charters Setting of priorities
Focus groups Health panels Workshops
Civic juries Patient and family consultation
Feedback/satisfaction questionnaires Public meetings Interviews

3. Trinity College Dublin, The University of Dublin
Justification
Importance of participation (4,5)
Importance of participation in healthcare
– Alma Ata 1978 (6)
– Benefits for health and healthcare systems (7-13)
– Strategy for reform (11)
Rhetoric and action (14)
– No consensus (3,13,15)
– Literature focus(16,17)

4. Trinity College Dublin, The University of Dublin
Study 1- The amount of patient and family
member participation at present
Study Design: Quantitative
Research Methods: Researcher-administered questionnaire
Setting: Outpatient type 2 diabetes service
Outpatient adult psychiatric service
Participants:
Service Stakeholder Group Number completed
Diabetes Patients
Family members
347
77
Psychiatric Patients
Family members
261
44

5. Trinity College Dublin, The University of Dublin
Study 2- Understanding, opinions, barrier and
facilitators of patient and family participation
Study Design: Qualitative
Research Methods: Focus groups and face-to-face and phone
interviews
Setting: Outpatient type 2 diabetes service
Outpatient adult psychiatric service
Participants:
Participants Interviews Focus Groups
Patients 20 11 2
Family members 20 16 1
Clinicians 24 5 4
Policy Leaders 15 15 -

6. Trinity College Dublin, The University of Dublin
Understanding of Participation
Understood at only the individual patient care level
– ‘Involved in your visits… going with you to see how you are doing.’
(Evelyn, Diabetes, Family member)
Senior clinicians and policy leaders service level understanding
– ‘I think of it at several levels, I suppose I first of all think about
individual patients who come in and meeting the families… the other
level of course is service, management and structures and planning
level.’ (Julie, Psychiatry, Clinician)
Confusion
– ‘How do you mean now with the service, like as in change, like as in
clinic changes or?’ (Laura, Psychiatry, Clinician)

7. Trinity College Dublin, The University of Dublin
Reported Utilisation
Thinking about your experience of the service over the last two years were you…
These questions were answered by: Diabetes patients n= 347/347, diabetes service family members
n=76/77, psychiatric service patients 259/2610 and psychiatric service family members 44/44
- Patient and family member reported service level participation

8. Trinity College Dublin, The University of Dublin
Reported Utilisation
Examples of no participation:
– ‘I don’t think it is something that is asked very regularly at all to be
honest.’ (Laura, Psychiatry, Clinician)
– Well you weren’t even notified on that [change in appointment
system] for a start…’ (Bob, Diabetes, Patient)
Examples of limited participation:
– ‘I think the thing with our service is that there is an awful lot that’s
done, but it’s done on an ad hoc basis and it’s not policy. And then so
if you’re looking at sector management meetings there’s no
involvement of users or carers’ (Olive, Psychiatry, Clinician)

9. Trinity College Dublin, The University of Dublin
Opinions on Participation
Do you want/do you want patients to be more involved in decisions made at the patient, service and national
level? These questions were answered by: Diabetes service patients n= 330/347. Diabetes service family
members n= 54/77. Psychiatry service patients n= 254/261. Psychiatry service family members n= 33/44.
- Support for greater patient participation by stakeholder group

10. Trinity College Dublin, The University of Dublin
Opinions on Participation
Do you want/do you want family members to be more involved in decisions made at the patient, service and
national level? This questions was answered by: Diabetes service patients n=307/347. Diabetes service family
members 67/77. Psychiatry service patients n=256/261. Psychiatry service family members n= 44/44.
- Support for greater family member participation by stakeholder group

11. Trinity College Dublin, The University of Dublin
Opinions on Participation
Support for patient participation:
– ‘They [mental health patients] are the people that are impacted most
by the type of service, by the quality of the service… so I think they
need to be involved in order to be able to have a say in how the
service is’ (Annie, Psychiatry, Policy leader)
Support for family participation:
– ‘The majority of the patients that we would see would have…full
capacity to be making their own decisions about things and even
resent the implication that family members need to be involved in their
care.’ (Mitchell, Diabetes, Clinician)

12. Trinity College Dublin, The University of Dublin
Barriers to Participation
Support for participation…BUT:
– ‘So ideally, if there was the resources and the time available’ (Laura,
Psychiatry, Clinician)
Implementation:
– ‘We would have to look at how do we go about planning our service
development because to be honest at the moment… it’s a lot of
informal meetings and chats’ (Linda, Diabetes, Clinician)
Capacity:
– ‘I wouldn’t, I wouldn’t, definitely not me. I am confident enough to sit in
with them [doctors and nurses] at all’ (Kelly, Psychiatry, Patient)

13. Trinity College Dublin, The University of Dublin
Positive Impact
Better service:
– ‘It would be a better environment’ (Melanie, Diabetes, Patient)
More power behind change:
– ‘They would be able to say, well actually you know not just from a
management point of view, not just from the healthcare workers point
of view, but also from the recipients of the service.’ (Julie, Psychiatry,
Clinician)
Positive emotions:
– ‘I suppose it would give them a boost… that somebody is listening to
them and taking them on board what they are saying and that it might
have an affect on the final outcome’ (Declan, Psychiatry, Patient)

14. Thank you, questions?
Lucy Whiston
whistonl@tcd.ie

15. Trinity College Dublin, The University of Dublin
References
1. Boulger J, Cronin C. Doing it with us not for us: Strategic direction 2015-
18- Staff guide to patient and public participation. Cork University
Hospital, Health Service Executive. ; 2014. Report No.: Contract No.
2. Carman KL, Dardess P, Maurer M, Sofaer S, Adams K, Bechtel C, et al.
Patient and family engagement: a framework for understanding the
elements and developing interventions and policies. Health Affairs.
2013;32(2):223-31.
3. Gagliardi AR, Lemieux-Charles L, Brown AD, Sullivan T, Goel V. Barriers
to patient involvement in health service planning and evaluation: An
exploratory study. Patient Education & Counselling. 2008;70(2):234-41.
4. Newman J. Modernising Governance. London: Sage; 2001.

16. Trinity College Dublin, The University of Dublin
References
5. Lowndes V, Pratchett L, Stoker G. Diagnosing and remedying the failings
of official participation schemes: The CLEAR framework. Social policy
and Society. 2006;5(02):281-91.
6. Organisation WH. Declaration of Alma-Ata, International Conference on
Primary Health Care. Alma-Ata USSR1978.
7. McEvoy R, Keenaghan C, Murray A. Service User Involvement in the
Irish Health Service: A review of the evidence. Dublin: Health Service
Executive and Department of Health and Children; 2008.
8. Simces Z. Exploring the link between public involvement/citizen
engagement and quality health care: a review and analysis of the current
literature: Health Canada; 2003.

17. Trinity College Dublin, The University of Dublin
References
10. Coney S. Effective Consumer Voice and Participation for New Zealand:
New Zealand Guidelines Group; 2004.
11. Gregory J. Conceptualising consumer engagement: A review of the
literature: Australian Institute of Health Policy Studies; 2006.
12. Hibbard JH, Greene J. What The Evidence Shows About Patient
Activation: Better Health Outcomes And Care Experiences; Fewer Data
On Costs. Health Affairs. 2013;32(2):207-14. .
13. Harding E, Johnson Pattinari C, Brown D, Hayward M, Taylor C. Service
user involvement in clinical guideline development and implementation:
Learning from mental health service users in the UK. International Review
of Psychiatry. 2011;23:352-7.

18. Trinity College Dublin, The University of Dublin
References
14. Boivin A, Lehoux P, Lacombe R, Burgers J, Grol R. Involving patients in
setting priorities for healthcare improvement: a cluster randomized trial.
Implementation Science. 2014;9(1):24.
15. Foot C, Gilburt H, Dunn P, Jabbal J, Seale B, Goodrich J, et al. People in
Control of Their Own Health and Care: The state of involvement. London:
The King's Fund; 2014. Report No.: Contract No.
16. Brett J, Staniszewska S, Mockford C, Herron‐Marx S, Hughes J, Tysall C,
et al. Mapping the impact of patient and public involvement on health and
social care research: a systematic review. Health Expectations. 2012.

19. Trinity College Dublin, The University of Dublin
References
14. Nilsen E, Myrhaug H, Johansen M, Oliver S, Oxman A. Methods of
consumer involvement in developing healthcare policy and research,
clinical practice guidelines and patient information material. Cochrane
Database Syst Rev. 2006;3
15. Organisation WH. People-Centred Health Care: A policy framework.
Geneva: World Health Organisation; 2007.