Recommended Topics for PCORI Research on Multiple Chronic Conditions | Chronic Condition | Evidence Based Medicine

 

  Recommended  Topics  for  PCORI  Research  on  Multiple  Chronic  Conditions    
For  health  care  reforms,  whether  being  implemented  or  contemplated,  identifying  and  pursuing   ways  to  improve  the  health  of  the  millions  of  Americans  coping  with  multiple  chronic  conditions   (MCC)  are  worthy,  much-­‐needed  areas  of  focus.    Given  that  it  was  created  “to  fund  research  that  will   provide  patients,  their  caregivers  and  clinicians  with  the  evidence-­‐based  information  needed  to   make  better-­‐informed  health  care  decisions,”  the  Patient-­‐Centered  Outcomes  Research  Institute   (PCORI)  presents  an  important  opportunity  to  fund  research  critically  needed  by  patients  facing   multiple  chronic  conditions  and  their  providers  to  enhance  care  for  the  large  and  growing  number   of  people  affected.    To  assist,  the  Partnership  to  Fight  Chronic  Disease  has  developed  a  list  of   important  research  topics  representing  areas  of  high  need  and  high  value  for  people  coping  with   multiple  chronic  conditions  for  PCORI’s  consideration.    We  also  strongly  encourage  collaborative   efforts  between  PCORI  and  research  at  NIH,  CDC,  and  other  agencies  within  HHS  to  accelerate   progress  for  people  with  multiple  chronic  conditions.     In  the  identification  of  these  areas  of  research  to  enhance  outcomes  for  people  with  multiple   chronic  conditions  (MCC),  we  recognize  the  significant  heterogeneity  that  will  be  encountered  with   this  population.  There  is  heterogeneity  in  the  demographics  and  health  status  of  the  individuals   affected,  the  settings  in  which  care  is  or  may  be  delivered,  treatment  effects,  and  in  the   combinations  of  comorbidities  themselves  and  the  level  of  severity  involved,  among  other  areas.     The  existence  of  these  differences  are  a  primary  cause  of  limitations  with  the  applicability  of  the   existing  evidence  base  and  should  be  an  important  consideration  in  the  design  and  selection  of   research  projects  across  the  comparative  effectiveness  research  spectrum  from  developing   effective  models  of  care  to  interpreting  and  applying  data  and  informing  decision  makers.    We  also   recognize  the  significant  need  to  build  the  evidence  base  and  enhance  care  in  practical  ways  taking   real  world  experiences  and  limitations  into  account.       The  recommended  topic  areas  are  organized  by  overarching  objectives  to  enhance  patient-­‐centered   outcomes  –  an  empowered  patient  population  engaging  with  a  well-­‐informed  and  equipped   healthcare  delivery  system.    

Empowered   Patient   Population  

Equipped   Informed   Evidence  Base   Health  System  

   

 

 

Empowered:  Informing  and  enabling  decision-­‐making  and  self-­‐care   • Developing,  testing,  and  evaluating:   • Tools  for  communicating  prognosis,  treatment  options,  complexity,  burden,  and  impact  on   quality  of  life  (short  and  long  term)  incorporating  outcomes  beyond  longevity.    Tools  should   include  ways  to  improve  health  literacy  for  people  in  crisis,  including  ways  to  stage   information  to  maximize  its  impact  and  effectiveness  and  to  communicate  uncertainty  given   limitations  in  the  tools  and  evidence  available.   • Tools  to  assess  patient  and  family  caregiver  capacity  and  additional  supports  needed  to   optimize  treatment  accounting  for  the  willingness  to  communicate   • Methods  for  incorporating  patient  preferences  in  choosing  treatment  options  (including,   evaluating  benefits  and  risks,  treatment  intensity,  uncertainty,  prognosis,  etc.)  and  family   preferences  including  reconciling  preferences  where  different  from  patient,  developing   communication  tools,  and  the  like   • Tools  to  facilitate  shared  decision-­‐making  among  providers  and  the  individual  patient,   including  identifying  models  that  work  to  address  health  disparities  and  health  literacy   issues  through  culturally  relevant  means   • Means  to  facilitate  coordination  and  collaboration  among  providers  incorporating  patient   preferences  and  treatment  goals  into  shared  treatment  plans   • Methods  to  understand  and  adapt  communication  and  decision-­‐making  to  account  for   differences    -­‐  e.g.,  cultural,  gender,  generational,  geographical,  racial,  and  ethnic  -­‐  in   benefit/risk  evaluation,  prognosis,  and  patient  preferences   • Caregiving  models  and  tools  to  determine  and  incorporate  caregiving  capacity  and   caregiver  preferences  into  decision-­‐making  for  people  with  multiple  chronic  conditions.       Informed:  Interpreting  and  applying  the  evidence   • Developing,  testing  and  evaluating:   •  Tools  to  utilize  existing  clinical  practice  guidelines  and  other  available  information  most   effectively  in  ways  that  allow  for  clinicians  to  individualize  treatment  based  on  patient   needs  and  preferences.    Tools  should  include  information  on  limitations  of  existing   prognosis  models  that  have  not  been  validated  or  tested  with  people  having  multiple   chronic  conditions.   • Methods  to  bring  patients  into  the  guideline  development  process  in  terms  of  identifying   the  questions  patients  would  want  guidelines  to  answer  to  facilitate  decision-­‐making.   • Methods  for  investigating  the  common  challenges  confronted  by  patients  with  multiple   chronic  conditions  and  utilizing  that  information  to  better  inform  treatment  guidelines.   • Methods  for  efficient  comparative  effectiveness  research  that  explicitly  addresses  patients   with  multiple  chronic  conditions.   • Tools  for  patients  and  providers  to  evaluate  feasibility,  both  clinical  and  individual,  to   recommended  treatment  regimens.  Individual  feasibility  should  include  ways  to  assess   cognitive,  emotional,  behavioral,  and  mental  health  barriers  to  care,  and  level  of  caregiving   support  and  capacity.   • Methods  to  assess  patient  preferences  with  respect  to  weighing  benefits  and  risks,  desired   health  outcomes  and  priorities,  reassessing  those  determinants  over  time.   • Tools  to  determine  prioritization  of  treatment  outcomes  incorporating  patient  preferences,   clinical  and  personal  feasibility.  

 

• •  

Objective  methods  to  evaluate  outcomes  for  patients  with  complex  needs  and  evaluating  the   impact  of  pay-­‐for-­‐performance  delivery  models  on  patients  with  multiple  chronic   conditions.   Tools  to  overcome  health  disparities  in  the  recommendation  and  pursuit  of  treatment   options  for  people  with  multiple  chronic  conditions.       Methods  to  identify  and  evaluate  programs  and  tools  that  consider  subpopulations  not  only   categorized  by  disease,  but  also  by  other  characteristics  that  help  to  identify  best  practices   in  addressing  health  disparities  and  match  intervention  strategies  with  patient  populations.      

  Equipped:  Effective  Models  of  Care   • Developing,  testing,  and  evaluating:   • Patient-­‐centered  definition(s)  of  “effective  care”  in  context  of  individual  patients  with   multiple  chronic  conditions.   • Models  that  enhance  self-­‐management,  adherence,  and  caregiving  for  people  with  multiple   chronic  conditions   • Effective  care  models  that  enhance  prevention  for  people  with  multiple  chronic  conditions   or  at  risk  for  developing  more  than  one  chronic  condition,  including  identification  and  ways   to  address  common  risk  factors  for  MCCs.   • Ways  to  train  existing  and  future  healthcare  workforces,  including  community  and  lay   health  workers,  to  prevent  and  manage  multiple  chronic  conditions  effectively.   • Care  models  that  promote  coordination/collaboration  for  patients  with  multiple  chronic   conditions  and  flexibility  in  care  settings,  modalities,  and  use  of  resources  within  and   outside  clinical  settings.   • Processes  for  to  promote  patient-­‐centered  treatment  plans  among  multiple  providers  and   facilitate  implementation  within  different  care  settings.   • Outcomes  related  to  care  settings  for  patients  with  multiple  chronic  conditions,  including   the  use  of  combinations  of  care  settings  over  time  to  develop  care  models  that  promote   independence  and  better  health.        

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