Www.childbirthconnection.org Who are Optimal Consumers for Guideline Development Groups?...

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Who are Optimal Consumers for Guideline Development Groups?

Evidence-Based Guidelines Affecting Policy, Practice and Stakeholders

New York Academy of MedicineNew York City

December 11, 2012

Carol Sakala, PhD, MSPHDirector of ProgramsChildbirth 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 ToolsPrimary 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: www.g-i-n.net/activities/gin-public/www.ginppi.wetpaint.com

http://www.g-i-n.net/activities/gin-public/


“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 www.g-i-n.net/activities/gin-public/toolkit


Toolkit Launch, Berlin 8.24.12


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



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



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



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)

http://us.cochrane.org/serving-clinical-practice-guideline-panel

Consumers United for Evidence-based Healthcare (CUE)http://us.cochrane.org/free-online-courses

Testing Treatments Interactivehttp://www.testingtreatments.org/

Critical Appraisal Skills Programme

http://www.casp-uk.net/


Working Across ContinuumProject 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

[email protected]

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