Who are Optimal Consumers for Guideline Development Groups? Evidence-Based Guidelines Affecting Policy, Practice and Stakeholders New York Academy of Medicine New York City December 11, 2012 Carol Sakala, PhD, MSPH Director of Programs Childbirth Connection New York City

Childbirth Connection National non-profit organization in New York City Since 1918, working to improve maternity care quality on behalf of women and families Mission is to improve the quality of maternity care through consumer engagement and health system transformation Frequently represent or engage consumers in clinical effectiveness and quality improvement activities Learn more: childbirthconnection.org/95years/

Continuum of Clinical Effectiveness Tools Primary data research  Systematic reviews  Performance Clinical Decision measures  practice  aids guidelines  Clinical decision support

G-I-N PUBLIC G-I-N Patient and Public Involvement Working Group Steering Committee and Working Group of researchers, health professionals, consumers with interest in patient and public involvement Activities: workshops, presentations, research, publications, Toolkit Harmonious with IOM Guidelines report Learn more:

“Consumer” G-I-N PUBLIC intends “patient and public” to be broadly inclusive “Consumer” often used in the U.S.: as in National Quality Forum Consumer Council, Consumers United for Evidence-based Healthcare, E-GAPPS Conference Here, “consumer” references the stakeholder perspective of those who have conditions and receive care, family members and caregivers who support them, and those who work on their behalf

G-I-N PUBLIC Toolkit To support consumer involvement in the full cycle of guidelines development and use Guided by needs assessment, research, authors’ experiences, and international guideline development best practice Version 1.0 released in Berlin in August at annual G-I-N meeting Additional chapters and updates planned Obtain at

Toolkit Launch, Berlin

Consumer Involvement Framework Consultation: Collecting information from consumers E.g., focus groups, workshops, surveys, literature searches, interviews Participation: Involving consumers in exchange of information I.e., member of team that develops and disseminates guidelines Communication: Providing information to consumers to support clinical decisions E.g., consumer version of guideline, decision aid, health education Learn more: Boivin et al. Qual Saf Health Care (2010)

Many Considerations for “Participation” Who are optimal consumers for guideline development groups? How can consumer members be recruited and supported? How can the chair facilitate consumer involvement? What are the roles and responsibilities of consumers on guideline development groups? How can consumers contribute to guideline dissemination? Learn more: G-I-N PUBLIC Toolkit (2012)

Personal Qualities/Circumstances As with professionals, consumer members need Good communication skills Ability to work as an effective member of a team Willing/able to fulfill responsibilities, e.g., attend meetings, review documents, comment on drafts, complete writing assignments Good health literacy

Typology of Consumer Members Person with the condition/disease, had it, or may get it Caregiver of person with the condition/disease Advocate involved with support groups, education, online and print resources, social media, policy Person on professional staff of organization devoted to research, education, advocacy, and/or policy on behalf of consumers

Consumer with Condition: Pros Understands lived experience of condition/disease (own, maybe others’ from support groups/resources) May have sophisticated understanding of options for prevention, diagnosis, treatment Very presence — talking with rather about — can foster more consumer-oriented discourse and end product

Consumer with Condition: Cons May have little understanding of others’ lived experiences of condition/disease or care practices May have limited critical appraisal skills May have rigid beliefs favoring specific options May have limited experience in similar professional venues Recruitment/support processes can avoid these pitfalls!

Caregiver of Person with Condition: Pros Has realistic understanding of lived experience of condition/disease May be needed as proxy for consumers who cannot participate: e.g., children, people with dementia, people who are too ill May have sophisticated understanding of options for prevention, screening, diagnosis, treatment, coping Very presence — talking with rather than about — may foster more consumer-oriented discourse and end product

Caregiver of Person with Condition: Cons May have limited understanding of others’ lived experience of condition/disease or care practices May have few critical appraisal skills May have rigid beliefs favoring specific options May have limited experience in similar professional venues Recruitment/support processes can avoid these pitfalls!

Advocate: Pros May be well informed about a broad range of lived experiences of the disease/condition and relevant care practices May have sophisticated critical appraisal skills May be well informed about the full range of options for prevention, screening, diagnosis, treatment, coping — and key studies May feel relatively comfortable and confident in guideline development groups and other professional venues

Advocate: Cons May benefit from further development of critical appraisal skills May be biased toward specific options Frustration with persistent system problems in appropriate care for people with condition/disease may impact participation Recruitment/support processes can avoid these pitfalls!

Organizational Staff Member: Pros Likely to be well-informed about experience of condition/disease via consultation, participation, communication activities Likely to have strong critical appraisal skills and to be aware of key studies May routinely carry out tasks similar to those of guideline group members via advocacy in clinical effectiveness and quality improvement work Likely to be comfortable in diverse professional venues, and to have personal relationships with many professional leaders

Organizational Staff Member: Cons May be relatively removed from lived experience of the condition or disease May have conflicts of interest due to organization’s dependence on industry funding sources Recruitment/support processes can avoid these pitfalls!

Basic Principles for Adding Value Involve critical mass of consumers with balance of perspectives and experiences Provide adequate training and support Provide financial resources to support/enable participation Involve consumers throughout cycle: prioritization – updating Enhance participation through good recruitment and leadership processes Complement participation with appropriate consultation and communication activities

Training/Support Resources for Consumers Consumer Involvement in Guideline Development: Why and How to Participate (video, Richard Rosenfeld) Consumers United for Evidence-based Healthcare (CUE) Testing Treatments Interactive Critical Appraisal Skills Programme /

Working Across Continuum Project LEAD model from National Breast Cancer Coalition Train and support consumers to work in a specific clinical domain (e.g., breast cancer) across continuum of clinical effectiveness activities (e.g., primary research, SRs, guidelines, performance measures, decision tools) content and quality depend on upstream sources basic biology applies across continuum key personnel/relationships, organizations and agencies involved across continuum

Consumer Involvement: Common Benefits Often complement professional contribution to guidelines question prioritization: prevention, less invasive interventions, validity of accepted but poorly assessed indications, whether or when to use interventions, option of doing nothing outcomes: full range of harms, longer-term effects, psychosocial and quality of life impacts, uncertainties background sections: more precise and informative, sound evidence, experience of undergoing test or treatment language: clear, sensitive, inclusive outsider insights: e.g., role of co-interventions, limitations of RCTs dissemination/adaptation: buy-in and partnership for next steps

Noteworthy Potential Impact Professional members: “It changed me” multi-stakeholder engagement and collaboration as professional development new potential for understanding consumer perspectives and experiences moving forward across full range of professional activities

Thank You! Carol Sakala Director of Programs Childbirth Connection