back to HOMEPAGE  Patient and carer groups as health care stakeholders Professor Judith Allsop, De Montfort University Professor Rob Baggott, De Montfort University Dr Kathryn Jones, De Montfort University Funded by ESRC grant: R000237888 Patient and carer groups Our research focused on: those groups which represent and/or promote the interests of patients and carers at the national level Groups in five disease/condition areas Alliances or umbrella groups Generic patients groups Cross-issue groups Patient and carer groups 186 questionnaires sent out 123 returned 40 interviews carried out with patient and carer groups 27 interviews carried out with other stakeholders Stakeholding in health care: What does the idea imply? Stakeholders have a shared ownership in the activities and outcomes of health care There is a relationship between stakeholders that is on-going - networks are important Stakeholders bring different perspectives and expertise and may also have different priorities and objectives Stakeholders have particular ‘rights and responsibilities’ depending on their role Stakeholders, by and large, accept the ‘rules of the game’ in the interest of a common purpose The ideal conditions for stakeholder working: There is clarity and order in the process of deliberation There is predictability about time scales in decision making There is an assumption that stakeholders have equal status Stakeholders have to cope with different and opposing views They should be open to persuasion They should accept that they will lose on some issues Following these ‘rules’ encourages the building of trust and mutual respect Research Findings (from qualitative and quantitative data): Patient and carer group characteristics Diversity In their core aims and objectives: some deal with specific diseases and conditions, others with a broader spectrum (e.g.: long term medical conditions, chronic illness in children) In the strategies followed: some are service providers, others are primarily campaigners In their tactics: some use insider networks, others are outsiders: they want to maintain independence In their focus and scope: some focus on a particular group, others on the general public In the size of membership, income and staffing: some groups have fewer than 1000 members, others over 10,000 In the structure of the group: some have nation-wide branches, others are ‘self-contained' Patient and carer groups characteristics: Common Factors A patient and carer focus – mostly membership-based but not all Expertise - a philosophy of ‘inclusion’ - experimental knowledge of a disease or condition   (as patient, carer or relative) - acquired expert knowledge of disease or condition - knowledge of the realities of service delivery - knowledge of patient and/or carer priorities    - knowledge of the capacity for self management given appropriate support  Actively involve members or the client group in decision making(internal participation) Interaction with other stakeholders and decision takers both formal and informal (external participation)  We argue that these characteristics constitute a form of Social Capital Involvement in the national policy process: The views of groups Top five facilitating factors (ranked very important or important) Ability to speak for users / carers 99% Expertise on key issues 99% Public profile of the group 87% Campaigning skills 77% Alliances with other organisations 76% Top five barriers (ranked very important or important) Lack of staff resources 83% Lack of financial resources 80% Lack of political resources 75% Lack of consultation on policy 71% Lack of support within government 65% Conclusion: Stakeholding Social capital Realising the potential Back to top Back to HomePage

Last updated 23/4/2001

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