Abstract
BackgroundThere are few examples of public patient involvement in policymaking for groups whose ability to participate may be affected by a disability, particularly for people with dementia and their family carers. Principles of engagement and inclusion in democratic processes are as important for these groups as other citizens. We used two innovative methods to increase involvement of people with dementia and family carers in the policymaking process in Ireland, specifically in relation to impending legislation on home care.MethodA Policy Café was co‐produced with people with dementia using a World Café methodology. A Carer's Assembly was co‐produced with caregivers of people with dementia using a citizen's assembly model.ResultsTen people with dementia discussed policy developments they wanted to see implemented in relation to diagnosis and home care. Twenty‐eight dementia caregivers prioritized four topics: home care; respite services; psychosocial supports; and financial supports. Film and illustrations were used to create accessible messages for policy‐makers to inform their decision making.DiscussionInvolving people with dementia and carers in policy development requires time and creativity to facilitate and maximize their involvement. Co‐production is essential to ensure the priorities of participants are identified, expressed and communicated effectively. A cumulative sequence of events and messages can generate significant engagement with policy‐makers. Policy‐makers need to hear the direct and authentic voice of people with dementia and carers when faced with important policy decisions.Patient or public contributionPeople with dementia and carers were involved in study design, data analysis and presentation.
Highlights
In the past two decades, much has been achieved in moving public and patient involvement (PPI) in health research from being a marginal or niche activity to one which is a necessary criterion for receiving research funding.[1,2]
Public involvement in health system planning and policymaking is increasingly recognized as a core activity in many industrialized countries, with an assumption that greater engagement by citizens in governance leads to more democratic and effective processes.9-13 Patient and family engagement, in particular, is seen as offering a pathway towards better-q uality health care, more-efficient care and improved population health.[14]
The use of creative and innovative methods can be useful for addressing barriers to involvement for people with different disabilities. We describe two such methods for involving people with dementia and their carers in the policymaking process which combine the principles of co-production and PPI; a dementia policy café and a citizen's assembly for carers
Summary
In the past two decades, much has been achieved in moving public and patient involvement (PPI) in health research from being a marginal or niche activity to one which is a necessary criterion for receiving research funding.[1,2] The involvement of patients and citizens in health research and policy is supported by legal and regulatory requirements[3] as well as having a moral and pragmatic footing.[4]. There are few examples of public patient involvement in policymaking for groups whose ability to participate may be affected by a disability, for people with dementia and their family carers. We used two innovative methods to increase involvement of people with dementia and family carers in the policymaking process in Ireland, in relation to impending legislation on home care. Results: Ten people with dementia discussed policy developments they wanted to see implemented in relation to diagnosis and home care. Discussion: Involving people with dementia and carers in policy development requires time and creativity to facilitate and maximize their involvement. Policy-makers need to hear the direct and authentic voice of people with dementia and carers when faced with important policy decisions. Patient or public contribution: People with dementia and carers were involved in study design, data analysis and presentation
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