Integrating Community Voice and Traditional Survey Research

Laying a Foundation for Addressing Health Disparities: Integrating Community Voice and Traditional Survey Research

APHA  140th  Annual  Mee0ng,  San  Francisco,  CA    

October  29,  2012    

Presented  by:  Loren  W.  Galvao,  M.D.,  M.P.H.  Senior  Scien0st,  Global  Health  

University  of  Wisconsin-­‐Milwaukee      

Integrating Community Voice and Traditional Survey Research

Partners

•  Loren  W.  Galvao  (1,2,3)      •  Ella  Dunbar  (4)    •  Samuel  Holland  (5)      •  Katarina  Grande  (2,  6)    &      •  David  A.  Frazer  (3)    

 1. Center  for  Global  Health  Equity,  CON,    University  of  Wisconsin-­‐Milwaukee,  Milwaukee,  WI    

2.  Department  of  Popula0on  Health  Sciences,  University  of  Wisconsin  School  of  Medicine  &  Public  Health,  Madison,  WI  

3  .  Center  for  Urban  Popula0on  Health,  Milwaukee,  WI    

4.  Social  Development  Commission,  Milwaukee,  WI  

5.  Community  Advisory  Board  Member  &  Spokesperson,  Milwaukee,  WI    

6.  Popula0on  Health  Ins0tute,  University  of  Wisconsin  School  of  Medicine  &  Public  Health,    Madison,  WI  

Integrating Community Voice and Traditional Survey Research

Presenter Disclosures

Loren  W.  Galvao  

(1)  The  following  personal  financial  rela0onships  with  commercial  interests  relevant  to  this  presenta0on  existed  during  the  past  12  months:    

No  Rela0onships  to  Disclose  

Integrating Community Voice and Traditional Survey Research

Background •  The  State  of  Wisconsin  ranked  16th  in  the  United  Health  

Founda0on’s  2010  American  Health  Rankings,  but  the  Milwaukee  County  ranked  as  one  of  the  states’  least  healthy  coun0es:  71  out  of  the  the  states  72  coun0es    

•  The  City  of  Milwaukee  is  one  of  the  most  segregated  ci0es  in  America  presen0ng  major  health  dispari0es  

•  Gap  between  tradi0onal  academic/  survey  research  and  community  members  

•  To  be  effec0ve  in  enhancing  the  health  of  Wisconsin’s  popula0on,  the  Survey  of  the  Health  of  Wisconsin  (SHOW)  (and  other  studies)  must  involve  underrepresented  groups  in  interpreta0on,  dissemina0on  and  other  phases  of  popula0on  health  research    

Integrating Community Voice and Traditional Survey Research

Purpose

1.  Pilot  of  a  Survey  of  the  Health  of  Wisconsin  (SHOW)  Community  Advisory  Board  (SHOWCAB)  

2.  Provide  recommenda0ons  to  Social  Development  Commission  (SDC)  and  the  SHOW  Project  in:  –  Data  interpreta0on  –  Dissemina0on  strategies  appropriate  for  urban  African  Americans  in  

Milwaukee  –  Community  ac0on  aiming  to  address  health  dispari0es    

Integrating Community Voice and Traditional Survey Research

Academic-Community Based Organization Partnership

•  Lay  African  American  residents  recruited  from  the  client  base  of  a  large  social  services  nonprofit  organiza0on,  the  Social  Development  Commission  (SDC),    

•  Formed  a  community  advisory  board  (CAB)  to  a  statewide  popula0on-­‐based  survey  administered  by  UW-­‐Madison,  The  Survey  of  the  Health  of  Wisconsin  (SHOW).  

Integrating Community Voice and Traditional Survey Research

Integrating Community Voice and Traditional Survey Research

•  Annual health surveys of Wisconsin residents and communities

•  Longitudinal follow-up of survey participants •  Flexible design to enable community-specific and

community-driven ancillary studies

Established in 2008 as an infrastructure for population health research in Wisconsin

Integrating Community Voice and Traditional Survey Research

•  Independent annual surveys

•  Representative samples of state residents and communities

•  Recruit 800-1,000 participants (21-74 years old) each year

•  ~3000 participants 2008-2012

SHOW:  The  Sample  

Integrating Community Voice and Traditional Survey Research

•  Information at the individual level –  Interview –  Physical exam –  Biological samples

•  Information at the community level –  Social, physical, and built environment

SHOW:  The  Informa3on  

Integrating Community Voice and Traditional Survey Research

SHOWCAB  0meline  

Welcome  Rela0onship  building  

What  is  an  effec0ve  group  member?  

What  is  research?  

Bad  vs.  Good  Research  Research  Ethics  

Introduce  to  concept  of  research.  Two  ways  of  collec0ng  data.  Ethical  

considera0ons  

MEC  Tour  Assess  member  of  evalua0on  tools  

Priori0ze  health  issues  

Present  data  on  highest  health  concern    

Assess  member  preference  on  data  

presenta0on  

Discussion  of  Unnatural  

Causes  episode  

Iden0fica0on  of  changes  

needed  in  the  community  

Prepare  for  May  

presenta0on  

Member  evalua0on  of  different  formats  in  which  

to  present  data  

CAB  spokesperson  elected  Sources  of  health  

informa0on  iden0fied  Guest  speaker  on  health  

area  of  concern  

Member  feedback  on  SHOW  recruitment  

material  Iden0fying  health  barriers  

May 2011

April 2010

Integrating Community Voice and Traditional Survey Research

Select Findings

•  SHOWCAB  members  feel  more  connected  to  popula0on  health  informa0on  and  inspired  for  “ac0on”  when  it  is  presented  in  format  of  personal  stories,  pie  charts,    billboards  and  news  ar0cles,  using  basic  sta0s0cs  

Integrating Community Voice and Traditional Survey Research

Sta3on Media  descrip3on Not  meaningful

Want  to  change

Need  more  info

1 1  in  every  3  print 1 4 2

2 %  repor0ng  hbp  pie  chart

1 2 3

3 Map 2 1 4

4 Text 1 3 3

5 Personal  story 0 5 2

6 Radio  story 1 3 3

7 1  in  3  video 2 3 2

8 Half  pie  chart 0 4 2

9 Billboard 0 4 3

10 1  in  3  faces  website

1 3 2

11 News  ar0cle 1 4 1

Integrating Community Voice and Traditional Survey Research

“2  out  of  3  SHOW  Par3cipants  Think  They  Are  Overweight”  

Source:  Wisconsin’s  New  Model  for  Applied  Public  Health  Research.  Survey  of  the  Health  of  Wisconsin  poster  

Integrating Community Voice and Traditional Survey Research

 I  was  feeling  fine…    

I  had  years  I  did  not  see  a  doctor  for  I  lacked  insurance,  but  I  had  a  chronic  cough  that  I  needed  to  have  checked  out.    I  was  told  during  that  visit  that  I  had  hypertension  and  also  three  leaking  valves  in  my  heart!    I  was  feeling  fine.    I  did  not  have  any  of  the  symptoms  the  doctor  asked  me  about.      

   The  doctor  loaded  me  up  with  informa0on  and  

medica0on.  Every  day,  I  take  aspirin,  Diovan,  Hydrochlorothiazide  and  Almopidine.  I  get  checked  regularly.    I  take  my  blood  pressure  at  home  once  a  week.    I  eat  beger,  less  fat  and  starches  and  more  fruits  and  vegetables.    I  also  exercise.      

   I  especially  want  to  tell  senior  ci0zens  to  visit  the  

doctor  regularly  because  they  may  have  hypertension  and  not  know  it.      

…I  did  not  know   Valjen  Headd,  Milwaukee  Resident      1  in  3  adults  has  high  blood  pressure    Ms.  Headd  did  not  know  she  had  high  blood  pressure,  now  urges  friends  to  see  a  doctor  regularly  

Integrating Community Voice and Traditional Survey Research

Select Findings (continued)

•  Dissemina0on  venues  (preferences):    

–  churches,    

–  community  newspapers,  and    

–  local  radio  sta0ons    

•  Categories  of  SHOW  data  iden0fied  as  the  greatest  health  issues  facing  their  communi0es:    

 

–  alcohol  &  substance  abuse,  

–   hypertension  and    

–  mental  health  

Integrating Community Voice and Traditional Survey Research

Select Outputs

•  SHOWCAB  discussions  influenced  SDC’s  programming  based  on  member-­‐iden0fied    priority  health  areas  &  generated  several  SDC’s  grant  applica0ons    

•  Brochures,  skit  developed  by  CAB  members  &  video  

•  SHOWCAB  methods  inspired  the  design  of  other  two      CAB  projects  in  Milwaukee  (ongoing)  

•  Process  evalua0on  gathered  SHOWCAB  members’  experience  and  lessons  learned;  report  forthcoming  (by  Grande  K.  et  al,  2012)  

•  SDC  is  currently  exploring  a  community-­‐academic  partnership  to  develop  medica0on  educa0on  and  health  literacy  program  to  complement  their  Prescrip0on  Access  and  Referral  Program  and  plans  to  sustain  the  CAB  

Integrating Community Voice and Traditional Survey Research

Conclusion

Integra0ng  a  community  voice  into  data  interpreta0on  &  dissemina0on  and  using  research  findings  for  ac0on  via  partnerships  with  community-­‐based  organiza0ons  can  be  a  valuable  approach  to  contribute  to  address  

health  dispari0es  and  promote  health  equity.  

Integrating Community Voice and Traditional Survey Research

Acknowledgments & Additional Information

•  SHOWCAB  members:  John  Gee,  Charlene  Harris,  Samuel  Holland  (CAB  Spokesperson);  

Nancy  Hunt,  Darrel  Stone,  Shoniece  Taylor,  Irene  Williams  and  Howard  Wright.    

•  CAB  Facilitator:  Virginia  Zerpa-­‐Uriona.      

•  Funding:    provided  by  a  Development  Grant  from  the  Wisconsin  Partnership  Program.  

•  Faculty  &  staff  involved,  from  our  ins0tu0onal  partners:  SDC,  CUPH,  SHOW  Project  and  

UW  SMPH.  

•  Addi3onal  informa3on  about  SHOWCAB  Project    &  SHOW  Project:  

–  hgp://www.cuph.org/projects/showcab/    

–  SHOW  Project:  www.show.wisc.edu