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Zaragoza, 27-28 April 2017
Mixed-method Research to Incorporate Patients into
the Development of Clinical Guidelines
Yolanda Triñanes
Scientific and Technical Advice Unit, avalia-t
Galician Agency for Health Knowledge Management (ACIS)
PUBLIC HEALTH CONFERENCE
10th anniversary of the Spanish Network of Health Technology Assessment (HTA) Agencies:
Insights for collaborative networking
Towards Patient and public engagement in HTA
Main issues
●
Difficulty in choosing the best strategy for patient engagement
in clinical practice guidelines.
●
Advantages of mixed-method research.
●
Photovoice method.
User involvement in Clinical Practice
Guidelines
●
Involving patients and users in the process of developing and
implementing CPGs.
●
Increases the appropriateness of clinical questions, the
outcomes considered, and the integration of patient values and
preferences.
●
CPGs standards include the consideration of patient perspectives
as a criterion of good quality, unclear how best to achieve this.
●
There are a range of methodologies and toolkits, but the
implementation of optimal procedures continues to be a
challenge for CPG developers.
Choosing an optimal approach: context
●
In 2009, the first version of the Clinical Practice
Guideline on Major Depression in Childhood and
Adolescence was published.
●
Following the methodological requirements and
update criteria of our National CPG Program, a full
update was necessary.
●
Opportunity to improve methodological aspects,
specifically the strategy of patient engagement,
which in the original guide had been included in the
external review.
Choosing an optimal approach:
mixed-method research
●
Analysis of the resources and methodologies available,
characteristics of the disorder, and age group: systematic
review of qualitative studies and a primary study using
Photovoice.
●
A QUAL-qual mixed method research design (Morse and
Niehaus, 2009) was adopted.
●
QUAL project: systematic review with the GRADE- CERQUAL
approach and thematic synthesis, which provided the core
evidence base.
●
qual project: had a participatory design method (Photovoice):
it provided additional evidence during the main phases of the
CPG development and supplementary evidence to the
systematic review.
Photovoice
●
Participatory action research strategy that involves researchers and
participants (co-researchers) in the design, procedure, analysis and
dissemination of results (Wang & Burris, 1992).
●
It uses photography and qualitative techniques to obtain
information about the views or concerns of a population on a topic.
●
Photography is the basis for discussion and promotes critical dialogue
and obtains information about attitudes and beliefs.
●
Used in 3 major areas: Social action, Education and Health research.
●
There is no prior experience in the adaptation of the method in its use
for patient involvement in a CPG.
Objectives
Main objective of the study was to understand the concerns, needs
and preferences of children & adolescents with depression and
their families using Photovoice as a tool
Specific aims
To transfer the evidence derived from this study to GPC and
disseminate the principal findings
An evaluation of Photovoice as a method
Photovoice: method
●
Incorporation of a sociologist, expert in Photovoice.
●
Advice on ethical-legal aspects to overcome challenges and ethical
concerns about the use of visual data were also required. We took into
account previous experience and the study received the approval of the
institutional committee.
●
Participants recruited from the Child and Youth Psychiatry Unit: a total
of 7 adolescents (11-17 y) and 10 relatives participated.
●
Setting: sessions were held in the Health Department of the regional
government.
Procedure
●
6 sessions of 90 minutes. Each session was moderated by two
researchers.
●
Initial session: participants introduced to Photovoice, and ethical and
safety issues related to the photographs.
●
Subsequent sessions: focus group with parents; and 2 Photovoice
sessions with adolescents; followed by a meeting with all the participants
to discuss the main results derived from the photographs and narratives.
●
Final session: 3 adolescents and 3 parents attended the working group
to discuss the main clinical implications derived from the study, and the
recommendations.
Main findings
●
Systematic review: 1 SR and 13 primary qualitative studies.
●
Main themes identified: (i) how adolescents understand
depression and associated symptoms (ii) impact and role of
family and friends (iii) therapeutic approach.
●
Findings derived from the Photovoice study integrated into these
themes and provided additional evidence
Additional Photovoice findings
There is a demand for information suitable for adolescents, families and
the general public
It is very difficult to understand depression and to stay calm...we need a lot of information,
advice and help” (parent)
Anti-stigma measures: importance of increasing social awareness of
adolescent depression
I think that people don´t know what depression is, they don`t understand and react badly...”
(adolescent)
Support groups where they can share experiences and information
“We need a lot of support and training, support groups may be a good idea”
)adolescent(
Additional Photovoice findings
Screening and the role of Primary Care as a way to access the system
“I think that GPs should start to ask about these things, that would be good" ...
)parent(
Treatment adapted to individual needs, follow a holistic approach and include
psychotherapy
“We should be offered different treatment choices...I think that all we are ever offered is pills and not therapy
)adolescent(
Interaction between health and education systems
The school helped a lot during the year so he was ready to go up to the next school year”
)parent(
Mixed-method research translation into CGP
●
The WG and participants translated the main findings into 5
recommendations concerning experience of care and patient
perspectives.
●
This evidence was taken into account to support and modulate
recommendations on treatments ( GRADE Evidence to
Recommendation frameworks).
●
Dissemination strategy: Photobook, Exhibitions, Scientific
dissemination, Mass media.
Photobook: I see my depression like this
Exhibitions
Conclusions
●
Confirmation of the value of a mixed-method qualitative approach to
obtaining information about the needs, preferences and concerns of
patients and their families.
●
Photovoice is an effective and innovative research technique that can
be suitable for use in CPGs and HTA.
●
This strategy offers unique opportunities to promote citizen
empowerment and reach policy-makers.
ThanK you for
your attention
Contact: avalia-t@sergas.es
We would like to thank the teenagers who brought us
their experiences in the form of photographs.
Your creativity and spirit of improvement are
a source of inspiration to us.

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Jornadas #PatientInHTA · Yolanda Triñanes

  • 1. Zaragoza, 27-28 April 2017 Mixed-method Research to Incorporate Patients into the Development of Clinical Guidelines Yolanda Triñanes Scientific and Technical Advice Unit, avalia-t Galician Agency for Health Knowledge Management (ACIS) PUBLIC HEALTH CONFERENCE 10th anniversary of the Spanish Network of Health Technology Assessment (HTA) Agencies: Insights for collaborative networking Towards Patient and public engagement in HTA
  • 2. Main issues ● Difficulty in choosing the best strategy for patient engagement in clinical practice guidelines. ● Advantages of mixed-method research. ● Photovoice method.
  • 3. User involvement in Clinical Practice Guidelines ● Involving patients and users in the process of developing and implementing CPGs. ● Increases the appropriateness of clinical questions, the outcomes considered, and the integration of patient values and preferences. ● CPGs standards include the consideration of patient perspectives as a criterion of good quality, unclear how best to achieve this. ● There are a range of methodologies and toolkits, but the implementation of optimal procedures continues to be a challenge for CPG developers.
  • 4. Choosing an optimal approach: context ● In 2009, the first version of the Clinical Practice Guideline on Major Depression in Childhood and Adolescence was published. ● Following the methodological requirements and update criteria of our National CPG Program, a full update was necessary. ● Opportunity to improve methodological aspects, specifically the strategy of patient engagement, which in the original guide had been included in the external review.
  • 5. Choosing an optimal approach: mixed-method research ● Analysis of the resources and methodologies available, characteristics of the disorder, and age group: systematic review of qualitative studies and a primary study using Photovoice. ● A QUAL-qual mixed method research design (Morse and Niehaus, 2009) was adopted. ● QUAL project: systematic review with the GRADE- CERQUAL approach and thematic synthesis, which provided the core evidence base. ● qual project: had a participatory design method (Photovoice): it provided additional evidence during the main phases of the CPG development and supplementary evidence to the systematic review.
  • 6. Photovoice ● Participatory action research strategy that involves researchers and participants (co-researchers) in the design, procedure, analysis and dissemination of results (Wang & Burris, 1992). ● It uses photography and qualitative techniques to obtain information about the views or concerns of a population on a topic. ● Photography is the basis for discussion and promotes critical dialogue and obtains information about attitudes and beliefs. ● Used in 3 major areas: Social action, Education and Health research. ● There is no prior experience in the adaptation of the method in its use for patient involvement in a CPG.
  • 7. Objectives Main objective of the study was to understand the concerns, needs and preferences of children & adolescents with depression and their families using Photovoice as a tool Specific aims To transfer the evidence derived from this study to GPC and disseminate the principal findings An evaluation of Photovoice as a method
  • 8. Photovoice: method ● Incorporation of a sociologist, expert in Photovoice. ● Advice on ethical-legal aspects to overcome challenges and ethical concerns about the use of visual data were also required. We took into account previous experience and the study received the approval of the institutional committee. ● Participants recruited from the Child and Youth Psychiatry Unit: a total of 7 adolescents (11-17 y) and 10 relatives participated. ● Setting: sessions were held in the Health Department of the regional government.
  • 9. Procedure ● 6 sessions of 90 minutes. Each session was moderated by two researchers. ● Initial session: participants introduced to Photovoice, and ethical and safety issues related to the photographs. ● Subsequent sessions: focus group with parents; and 2 Photovoice sessions with adolescents; followed by a meeting with all the participants to discuss the main results derived from the photographs and narratives. ● Final session: 3 adolescents and 3 parents attended the working group to discuss the main clinical implications derived from the study, and the recommendations.
  • 10. Main findings ● Systematic review: 1 SR and 13 primary qualitative studies. ● Main themes identified: (i) how adolescents understand depression and associated symptoms (ii) impact and role of family and friends (iii) therapeutic approach. ● Findings derived from the Photovoice study integrated into these themes and provided additional evidence
  • 11. Additional Photovoice findings There is a demand for information suitable for adolescents, families and the general public It is very difficult to understand depression and to stay calm...we need a lot of information, advice and help” (parent) Anti-stigma measures: importance of increasing social awareness of adolescent depression I think that people don´t know what depression is, they don`t understand and react badly...” (adolescent) Support groups where they can share experiences and information “We need a lot of support and training, support groups may be a good idea” )adolescent(
  • 12. Additional Photovoice findings Screening and the role of Primary Care as a way to access the system “I think that GPs should start to ask about these things, that would be good" ... )parent( Treatment adapted to individual needs, follow a holistic approach and include psychotherapy “We should be offered different treatment choices...I think that all we are ever offered is pills and not therapy )adolescent( Interaction between health and education systems The school helped a lot during the year so he was ready to go up to the next school year” )parent(
  • 13. Mixed-method research translation into CGP ● The WG and participants translated the main findings into 5 recommendations concerning experience of care and patient perspectives. ● This evidence was taken into account to support and modulate recommendations on treatments ( GRADE Evidence to Recommendation frameworks). ● Dissemination strategy: Photobook, Exhibitions, Scientific dissemination, Mass media.
  • 14. Photobook: I see my depression like this
  • 16. Conclusions ● Confirmation of the value of a mixed-method qualitative approach to obtaining information about the needs, preferences and concerns of patients and their families. ● Photovoice is an effective and innovative research technique that can be suitable for use in CPGs and HTA. ● This strategy offers unique opportunities to promote citizen empowerment and reach policy-makers.
  • 17. ThanK you for your attention Contact: avalia-t@sergas.es We would like to thank the teenagers who brought us their experiences in the form of photographs. Your creativity and spirit of improvement are a source of inspiration to us.