policy & Publications

NSGC Request for Proposals: Measure-Developer Consultant

Project Title: Genetic Counseling Outcomes Measurement Development

Proposal Deadline: Friday, June 7, 2019

Attachment: Genetic Counseling Outcomes Measurement Development


Genetic Counselors are professionals who have specialized training in medical genetics and counseling to provide personalized interpretation of genetic test results and to guide and support patients with information about: inherited diseases, how family and medical histories potentially affect the possibility of disease occurrence, and determining the most informed choices about genetic tests for a patient.

The first class of master’s degree genetic counselors graduated from Sarah Lawrence College in Bronxville, NY in 1971 and in 1979, the National Society of Genetic Counselors (NSGC) was founded in response to the tremendous growth of the profession. Today, there are more than 5,000 certified genetic counselors employed in various settings, but there is no standardized billing practices for these services.

The value proposition in healthcare is often determined because of the quality of care in accordance with the cost of patient experience (Univ of Utah). Reliable and valid measures are key for evaluating and guiding behavior and holding accountability. In order to achieve the goal of integrating genetics and genomics into the delivery of healthcare to benefit outcomes, NSGC seeks to identify patient-reported outcomes measures (PROMS) to the National Quality Forum (NQF) to receive endorsement. NQF recognition is important to benefit genetic counselor value.

NSGC seeks a level of expertise beyond current membership ability to achieve this goal. NSGC seeks to contract with an individual, likely a health services researcher or measure developer who can assist with developing, testing, endorsing, and implementing these PROMS.


The purpose of this request for proposal is to enter into a contractual agreement with a successful bidder and select a qualified contractor with the following qualifications:

  • Familiarity with NQF Performance Measure Endorsement requirements and process.
  • Experience with Quality Strategies and implementing performance measures in healthcare service-delivery.
  • Familiarity with, or willingness to learn, genetic counseling service-delivery principles.

The qualified contractor should be able to fulfill the following deliverables:

1) Evaluate the Committee’s PROMs and their readiness for NQF endorsement.

2) Outline proposed next steps to achieve full readiness to submit to NQF for endorsement.

3) Develop a proposal to submit to NQF’s endorsement process.

4) Provide technical expertise to achieve NQF endorsement.

5) Provide implementation, data collection, and data storage guidance for each PROM.


  • April 26, 2019: RFP Release Date
  • June 7, 2019: Proposal Due Date
  • July 2019: Notification of Award
  • July-August 2019: Finalize Contract

*Please note that this timeline is subject to change and NSGC reserves the right to terminate the contract at will for any reason.


Email proposals/questions to Molly Giammarco, NSGC’s Senior Manager for Policy & Government Relations. 

Q1: For the promotion of the measure: GCOS-24, we understand that there is an abbreviated version called the Genomic Outcomes Scale (GOS).  Can you confirm whether you would like the work to be done for GCOS-24 or for GOS?

  • While we would generally prefer the work with the abbreviated/shorter version, we acknowledge that this version is not as well validated, so our timeline may require us to work on the GCOS-24.  Our decision regarding which version to pursue would be based on input from the measure’s developer (our collaborator and member of the Outcomes Committee) as well as your group in terms of measurement properties.


Q2: Under section II: “If additional data collection is needed, would you prefer to have your association management company create a system for collecting and housing the data? Or would you prefer that we cost and propose a system?”  Have you envisioned any potential deliverables for this part of the work?

  • We likely would need to have our organization positioned to collect and house data for purposes of this RFP or other similar ones in the future, however, exact details will depend on who our research partners.  Potential deliverables would be to source and set-up such a system or to provide advice on potential routes we could explore ourselves.


Q3: If additional data collection is needed, would you prefer to have your association management company create a system for collecting and housing the data, or would you prefer that we include a solution for that in our proposal?

  •  Please see our answer to Question #2.


Q4: If the work to submit to NQF for any of the measures would benefit from gaining access to existing data, is it possible for us to view the existing data, use the existing data, and/or apply the existing data to future analysis?

  • Yes.


Q5: If it is determined that data collection is required for submission of one or more of these measures to NQF, should we assume that NSGC will identify and engage the participants (Genetic Counselors) or should we plan to recruit these participants.

  •  NSGC will take the lead in engaging its membership.


Q6: If one has been identified, what is the project duration?

  •  Approximately 12 months for a measure submission; potentially longer if more than one measure or a longer-term contract is proposed and accepted.


 Q7: Is there a page limit on RFP? If so, what is it?

  •  There is no specific page limit.


Q8: Item I of the SOW (“Promote one, two or three of the following…”) includes several contingencies. While subtasks 1 (“Perform full evaluation of…”) and 2 (“Use this evaluation to recommend…”) would be performed under any circumstance, the effort for subtasks 3, 4 and 5 depend on the course of action determined after subtask 2. For example, pursuit of NQF endorsement on three measures would be significantly more work than pursuit of NQF endorsement on one measure. Would it be acceptable to submit a price range for these activities?

  •  Yes, a range of pricing would be acceptable.


Q9: Could you clarify if NSGC is definitively looking for a measure developer or an advisor on the measure development process? A measure developer would produce the technical specifications for a measure, while an advisor would guide the overall measure development process. Based upon our reading of the final paragraph of the Background section (“…facilitate the groundwork for developing, testing, endorsing and implementing PRO-PMs”) we believe the advisor role is more in line with your expectations.

  •  Most likely a measure advisor would be sufficient, but if one of our measures was appropriate to develop into a PRO-PM (PROM Performance measure), it may require additional expertise more in line with a measure developer.


Q10: As part of evaluation established measures (GCOS/MMIC) would we have access to data from primary studies done by McAllister, Lewis and others.

  • Yes, you would have access to those data.


Q11: For deliverable 5, how technical should “data storage guidance” be?

  • Broad categories of options should be sufficient, although any specific factors to consider would also be useful to know, if relevant.


Q12: Could you confirm that the intent of this proposal is around the development and/or endorsement of Patient Reported Outcomes Performance Measures (PRO-PMs) as opposed to Patient Reported Outcome Measures (PROMs)? From the Statement of Purpose Background and background, it appears the focus of PRO-PM, but PROM is used intermittently through the rest of the RFP.

  • At this point, we are unsure whether some or all of the measures would qualify for development into PRO-PMs, so while that category is our ultimate goal when possible, we also are interested in creating and maintaining high quality PROMs.


Q13: The Statement of Purpose identifies creation of a “strategic plan for increasing access to genetic counseling services by identifying genetic counselors’ market-impact, areas of improvement for reimbursement services and assessing longitudinal trends in genetic counseling code reimbursement.”

1. The rest of the RFP makes no reference to reimbursement/coding, is reimbursement and coding intended to be part of this proposal?

    • We would like some guidance around feasibility of developing a cost or access measure that would meet NQF criteria for endorsement; however, there would be no need for a deliverable beyond that.

 2. Is a strategic plan a formal deliverable?

    •  A formal strategic plan is not required in the categories of access or cost. However, the Outcomes Committee will be providing input and guidance to the NSGC Board of Directors regarding our experience with and recommendations for use of these three measures in the provision of quality genetic counseling services.


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