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| Journal of the New Zealand Medical Association,
15-July-2005, Vol 118 No 1218
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Assessing and developing community participation in primary
health care in Aotearoa New Zealand: a national study
Pat Neuwelt, Peter Crampton, Sue Crengle, Kevin Dew, Anthony
Dowell, Robin Kearns, David Thomas
Consumer and community involvement in the planning and
delivery of health care is core to the original concept of primary health care,
as defined in the Alma Ata Declaration.1
Primary
health care is essential health care based on practical, scientifically sound
and acceptable methods and technology made universally accessible to individuals
and families in the community through their full participation and at a cost
that the community can afford to maintain at every stage of their development in
the spirit of self-reliance and self-determination.
The Declaration was the response of the World Health
Organization, and its international delegates, to the failure of
hospital-centred health care to provide for the basic health care needs of the
rural poor in developing countries. It recognised the success of early
grassroots primary health care initiatives in South Africa and other developing
nations.2,3 These initiatives had demonstrated
the positive impacts on access, appropriateness, and affordability of involving
people in planning their own local health
services.2–4
Many rationales underlie the involvement of consumers and
communities in the planning and delivery of health care—although in health
policy, these rationales are often implicit. Arguments for participation include
the legitimation of policy, the improvement of service appropriateness, the
redistribution of resources, and the reduction of inequalities in
health.5–7 A fundamental justification in
New Zealand is found in the Treaty of Waitangi, which defined political
participation as a right of the Treaty partners, Maori as tangata whenua, and
the Crown.8,9 There is evidence that community
participation in health organisations is ineffectual, unless the organisation
has individuals within it who are committed to learning and open to
change.10,11
There are few rigorous studies that have measured the
effects of community participation in terms of health outcomes; however there is
evidence of service improvement. A systematic review of the evidence related to
involving patients in the planning and development of health care concluded that
involving patients contributes to changes in service delivery in several ways
across a range of settings.12 Changes include
an improvement of patient information sources and access to services (such as
simplified appointment procedures, extended opening times, and improved physical
access for people with disabilities) as well as the development of new services
(such as advocacy, employment initiatives, and crisis services).
Third-sector (non-government and non-profit) primary care
organisations in New Zealand and USA are more likely than private general
practices to have community involvement in their
governance.13–15 Research into
third-sector services provides indirect evidence concerning the effects of
community involvement.
In New Zealand, community-governed third-sector primary care
organisations have been found to serve largely non-European and low-income
populations,14 to have comparatively low
user-charges, and to employ large numbers of Maori and Pacific
staff.16 Similarly, the achievements of
community-governed third-sector community health centres (CHCs) in the USA in
improving access to care for vulnerable populations, providing high-quality
primary care, improving health outcomes, and reducing health inequalities have
been well documented.15,17–23
Until recently, consumer and community participation in
primary care organisations had been a reality for only a small proportion of
providers in New Zealand.24 It became an
explicit part of government policy with the advent of New Zealand’s
Primary Health Care Strategy25 and the
emergence of Primary Health Organisations (PHOs) in 2002, as demonstrated in the
following statements:
PHOs
must demonstrate that their communities, iwi, and consumers are involved in
their governing processes and that the PHO is responsive to its
community.25
The
DHB must be satisfied that community participation in PHO governance is genuine
and gives the communities a meaningful voice. In addition, DHBs will require
PHOs to show how they respond to their
communities.26
The implementation of this aspect of the Primary Health Care
Strategy has proved challenging not only for many PHOs but also for District
Health Boards (DHBs), charged with PHO contracting. While many third-sector
primary care organisations have experience at successfully implementing
community governance models, community involvement is largely foreign to the
for-profit model of general practice, which has been mainstream in New Zealand.
In an environment of privately owned general practice, it is
not easy for primary care providers, or even contractors, to adopt a culture
that acknowledges the contributions of consumers and communities to health
service planning and delivery. From both theoretical and practical perspectives,
community involvement in governance challenges the ownership boundaries inherent
in a business model.27
Despite clear government policy aimed at introducing
community participation in the governance of PHOs, there has been a notable
absence of frameworks and tools to aid PHOs in engaging with the communities
they serve. This project aimed to develop a framework for assessing and
developing community participation in PHOs, and to produce a toolkit for PHOs
which would be a practical resource for primary care providers.
MethodsThe research project was
undertaken using qualitative methodology. Sampling was purposive, with the aim
of collecting a diverse sample of key stakeholders from different levels of the
primary care sector throughout New Zealand. Initially a snowballing technique
was used, beginning with people known to the researcher (PN), followed by
heterogeneity sampling for assumed diversity of views. The three key factors
sampled for were role in the sector, ethnicity and geography.
In Part 1, participants were asked their views on, and
experience of, community involvement in primary care organisations and how one
might assess it. In Part 2 and Part 3, the role of participants was principally
to offer feedback on the draft toolkit for PHOs.
Data collection was by in-depth semi-structured
individual and group interviews; however a written feedback form was used in
Part 2 for the toolkit consultation. Nearly all participants were interviewed
face-to-face, with a few by telephone. All interviews were audiotaped (with the
consent of participants) and subsequently transcribed. All Part 1 participants
were sent their own transcripts for correction or comment.
Transcripts of the audiotapes were analysed with the
help of NUD*IST qualitative analysis software (N6 version) to manage and code
the data. Data analysis involved using a constant comparative method, in which
transcripts are repeatedly reviewed to find emergent themes, consistent with a
general inductive approach.28 The framework for
the community participation toolkit (made up of a series of process indicators)
was developed from these themes.
The research was organised around three parts, each
with its own method and sample. These three parts are described below.
Part 1—Interviewing key stakeholders in the primary care sector:
Table 1. Part 1
participants by role, ethnicity, and geography (N=42)
Part
2—Consultation
on the draft toolkit:
The aim of Part 2 was to consult on the toolkit with
Part 1 participants, and with an even broader group of key stakeholders in the
sector. Invitations were sent by email to representatives of key stakeholder
groups which had not yet participated in the research. In particular, the
medical directors of eight Independent Practitioners Associations (IPAs) were
contacted, and all but two of those organisations agreed to participate. Several
primary care nursing leaders were also contacted, along with DHB employees
working with PHOs.
A feedback form was developed, which invited
participants to rate the degree to which they agreed with a series of statements
about the toolkit’s form, content and potential usefulness to general
practice and to PHOs.
Seventy-eight copies of the draft toolkit were mailed
with feedback forms to the Part 1 participants and the other stakeholders who
had responded positively to the invitation. The consultation period was extended
from 1 to 3 months, due to the limited number of early responses. A total of 32
written responses were received from the sector over the 3-month period. Half of
the respondents were Part 1 participants. None of the IPAs returned feedback
forms, but feedback was received from five primary care nursing leaders, from
seven PHOs, and from six different DHBs. Despite the limited response from GP
organisations, there was a large amount of useful feedback received from a wide
variety of stakeholders, including three GP
leaders.
Part
3—Piloting the CP Toolkit in Primary Health Organisations
Part 3 consisted of the
following activities:
From a research
perspective, it was important to have a diverse group of PHOs involved in
piloting the toolkit; diverse by location, size, and history/type. Of the eight
PHOs which expressed an interest in participating, five were formally
approached. These five included two rural PHOs (one in the North Island and one
in the South Island), two urban PHOs (one moderately large, one small) and one
very small PHO located in a small town. Two of the PHOs served a high proportion
of Maori and one served many Maori and Pacific peoples. Three of the PHOs were
funded on the Access formula, one on the Interim, and one on Interim with Access
practices. Two of the PHOs grew out of community-based organisations, while the
other three grew out of partnerships between IPAs and community providers.
Despite initial consent by its board, the South Island PHO subsequently withdrew
from the research before the pilot site visit, leaving four PHOs in the pilot
phase.
The researcher negotiated with the PHO contact people
(usually managers) to arrange meetings with key individuals to trial the
toolkit’s review process. For the purposes of the pilot process, the full
review was adapted by combining the self-review and external reviews. Different
groups within each PHO tested different sections of the toolkit. In three PHOs,
all six sections of the CP Toolkit were tested. Meetings were held with PHO
boards, iwi representatives, community representatives, PHO management staff,
and other groups (such as clinical advisory groups).
All meetings were audiotaped and transcribed, and data
analysed. In one PHO, the researcher was only able to facilitate a limited
review process with one staff and one board member, due to staff time
constraints at the time of the visit.
Subsequent to the pilot site visits, each PHO manager
responded to an email questionnaire which sought feedback on the usefulness to
their PHO of the CP Toolkit for PHOs.
Data gathered during the pilot process contributed to the final editing of the
toolkit.
ResultsPart
1—The primary output of this study has been the Community
Participation Toolkit for PHOs, which will be published in 2005. For the scope
of this paper, it is not feasible to do more than give an overview of the
toolkit contents.
The toolkit consists of a set of resources on community
participation in primary health care, including defining communities, engaging
with Maori communities, and a ladder of participation. It also includes a review
process, involving process indicators, that a PHO can use as part of its
strategic planning or continuous quality improvement processes. Finally, the
toolkit contains a list of references for further exploration of the
topic.
Part 2—The
feedback from the consultation was mostly very positive and a large majority of
respondents could see the relevance and importance of the toolkit for PHOs. A
summary of the rating of individual items on the feedback form is shown in Table
2.
Table 2. Part 2 feedback form responses
(N=26)
*Those items which only
selected participants were asked to complete, and therefore the number of
responses is low; **Confusion over questions 13–15 (which were
interrelated) meant that the written feedback was given more weight than the
ratings for these items.
There was concern expressed by some that PHOs were in need
of a set of resources, but perhaps were not ready to seriously engage in the
review process outlined in the CP Toolkit for
PHOs. Many stated a view that the toolkit was relevant to general
practice as well as PHOs, while others stated that it had no relevance to
general practice. Many respondents offered suggestions for decreasing the size
of the toolkit and making it more user-friendly for PHOs. As a result of the
feedback, many changes were made to the toolkit before the second draft was
completed for the pilot process.
Part
3—The three pilot PHOs that completed the full adapted review
process expressed satisfaction with the process. They felt that the discussion
of items in the toolkit’s workbook gave them the opportunity to reflect on
what their PHO had achieved, to discuss future goals, and to further develop
relationships within the PHO during the process. There was evidence of
particular benefit for iwi and community representatives on boards and community
advisory committees. They felt that they learned new information about their
local PHO through the review process, and gained confidence in their role in the
organisation. The fourth pilot PHO expressed regret that they were unable to
complete the review due to time limitations, as they felt it would have been
beneficial to their organisation.
Following the pilot site visits, the PHO managers’
feedback on the toolkit and its review process was very positive, with
suggestions that they would use the toolkit in a number of ways, such as for
strategic planning, board training, or as performance indicators for PHO
management.
Despite the difference in the provider make-up of the four
pilot PHOs, in each PHO there was evidence of a genuine commitment to engaging
with communities, and each was taking a unique approach to it. In three of the
four PHOs, the PHO manager demonstrated strong leadership for community
participation. Health promotion coordinators and some board members were also
notable advocates. In the fourth PHO, the leadership for community engagement
came from a practice manager and a board member. Much of the leadership for
community participation in the pilot PHOs came from people with nursing
backgrounds.
In this study, there appeared to be some relationship
between the level of buy-in that providers had in the PHO and the size of the
PHO. In the larger organisations, the PHO was perceived by providers to be
external and separate to them. This observation held true not only for GP
providers but also community health providers, and in both rural and urban
locations. The smaller PHOs demonstrated a stronger identity, regardless of
their provider make-up.
There was evidence in the pilot PHOs of tension between the
business imperative of running a viable not-for-profit organisation and
involving communities in governance and decision-making processes. There were
two distinct issues described. Firstly, managers described a lack of adequate
funding for PHOs to spend the time necessary to meaningfully engage with
communities. Even those PHO managers who were clearly passionate about working
more closely with the communities they served stated that PHO management funding
in their contract was inadequate to cover the actual cost of community
participation.
Secondly, some GPs expressed concern that community
representatives on PHO boards could have the potential to make decisions that
impacted negatively on their constituent practices. In the three pilot PHOs that
had a private GP provider base, the GPs were strongly represented at board
level.
DiscussionThis research has led to the
publication of the Community Participation
Toolkit for PHOs, which has been preliminarily tested in a small set of
PHOs. Consistent with the
literature,29–32 this research offers
further evidence that it is possible to define the processes which health
organisations can set in place in attempting to ensure that community
involvement benefits communities and health organisations alike. Detailed
discussion of the toolkit is the subject of another paper.
While the toolkit is intended for use by PHOs, it may also
be a useful resource for District Health Board (DHB) and Ministry of Health
personnel responsible for primary health care funding and planning. The toolkit
relies on the commitment of a PHO, its staff, and its board to involving
communities in decision-making. The existence of visionary leaders in PHO
management and governance, who are committed to working with communities and to
developing innovative primary health care services, is an essential ingredient
to meaningful community engagement in PHOs. This finding is consistent with
previous research.10–11 In particular,
the UK research on Primary Care Groups demonstrated that leadership for public
involvement and openness to organisational change were key factors in public
involvement leading to positive
change.11
Even with the emergence of the ‘PHO model’,
there is clear evidence that different types of PHO lead to different
expressions of community engagement. As each PHO has a unique history of local
relationships, there can be no ‘gold standard’ for engaging
communities in PHOs. There is a particular challenge ahead for large PHOs in
which both providers and communities may feel less engaged in the PHO. For them,
the first task may be to develop the ‘internal PHO community’ to the
point where providers share a vision for the PHO and are open to developing
innovative health promotion and health services.
The cost of community participation is a challenge for PHOs,
since engaging with communities can be a time-consuming process. Without a
doubt, the business imperative of both PHOs and constituent provider
organisations can act as a barrier to meaningful community engagement.
Furthermore, there are ongoing tensions in the sector due to the issue of
ownership boundaries in primary care still remaining unresolved from a policy
perspective, as discussed elsewhere in the
literature.14,27,33
During the period of this research (2003–2005), there
was a notable shift in the views of many key individuals in the primary care
sector about the place of community involvement in the planning of primary
health care at a local level. At the outset of the project, many participants
were uncertain about the relevance of community involvement to primary health
care. By the time of the pilot site visits, the leadership for community
engagement in PHOs was coming not only from communities, but also from nurses
and GPs.
This study had some limitations. Participants were limited
in number for practical reasons. There are many advocates of consumer and
community involvement who work outside the formal health sector, and their views
were not incorporated into this study. There were some key stakeholder groups in
the sector that the researcher had difficulty engaging in the study. The pilot
process was limited by the timing of the research. Many PHOs were in the early
stages of development and managers were coping with the new reporting
requirements. This administrative load took precedence, for some, over
participating in the research.
As a result, one pilot site pulled out and another did not
complete the full review process. Clearly, the pilot process was not a
comprehensive testing of the toolkit. To validate the observations made during
this research, a much larger evaluation of the toolkit, involving many more PHOs
in New Zealand, would need to be carried out. The
CP Toolkit for PHOs has, however, been
reviewed in-depth by three diverse PHOs, and was found to be a useful
resource.
As the research employed qualitative methods, it is not
possible to generalise the findings described here to all PHOs. Instead, the
findings offer insights into some of the issues facing PHOs with regard to their
engagement with the communities they serve. By its very nature, each PHO is
unique as there is no ‘one size fits all’ for primary health care
services if they are responsive to their communities.
Engaging with communities is core to the development of
innovative services and health promotion in primary health care. The
Community Participation Toolkit for
PHOs has been developed
to complement existing quality tools available for clinical general practice and
nursing, and is intended to support the ongoing development of primary health
care in Aotearoa New Zealand.
Author information:
Pat Neuwelt, Peter Crampton, Sue Crengle, Kevin Dew, Anthony Dowell, Robin
Kearns, David R Thomas.
Acknowledgements:
This research was supported by the Health Research Council of New Zealand (Grant
#02/253). The authors acknowledge the generosity of the participants in this
study, and the helpful comments provided by the anonymous reviewers of an
earlier draft of this paper.
Correspondence: Dr
Pat Neuwelt, Centre for Health Services Research and Policy, School of
Population Health, University of Auckland, Private Bag 92019, Auckland 1. email:
p.neuwelt@auckland.ac.nz
References:
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