I 

113TH CONGRESS 

1ST SESSION H. R. 1666 

To create a patient-centered quality of care initiative for seriously ill patients 

through the establishment of a stakeholder strategic summit, quality 

of life education and awareness initiative, health care workforce training, 

an advisory committee, and palliative care focused research, and for 

other purposes. 

IN THE HOUSE OF REPRESENTATIVES 

APRIL 23, 2013 

Mr. CLEAVER (for himself and Mr. BACHUS) introduced the following bill; 

which was referred to the Committee on Energy and Commerce 

A BILL 

To create a patient-centered quality of care initiative for 

seriously ill patients through the establishment of a 

stakeholder strategic summit, quality of life education 

and awareness initiative, health care workforce training, 

an advisory committee, and palliative care focused research, and for other purposes. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Patient Centered Qual5 ity Care for Life Act’’. 


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1 SEC. 2. FINDINGS. 

2 Congress finds the following: 

3 (1) Studies demonstrate that, despite very high 

4 health expenditures, seriously ill patients are not 

5 satisfied with the quality of their medical care, char6 acterized by untreated symptoms, unmet psycho7 social and personal care needs, high caregiver bur8 den, and low patient and family satisfaction. 

9 (2) Health care delivery systems in the United 

10 States are not set up to address the complex chronic 

11 care needs that are increasingly becoming the norm 

12 for more patients and survivors (and family care13 givers of such patients and survivors) facing serious 

14 illness like cancer; heart, renal and liver failure; lung 

15 disease; Alzheimer’s disease and related dementias, 

16 which are care needs that can span over many years 

17 or even decades and impose significant burdens on 

18 family caregivers. 

19 (3) Public outreach and education for seriously 

20 ill patients, survivors, and their families to improve 

21 awareness of and demand for the benefits of inte22 grating symptom management alongside disease-di23 rected treatment is essential to improving the quality 

24 of life of patients, survivors, and their families, 

25 which should be an integral element of quality health 

26 care. 


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1 (4) Palliative care is specialized medical care 

2 for seriously ill patients. This type of care is focused 

3 on providing patients with relief from the symptoms, 

4 pain, and stresses of a serious illness—whatever the 

5 diagnosis. The goal is to improve quality of life for 

6 both the patient and the family. Palliative care is 

7 provided by a team of doctors, nurses, and other 

8 specialists who work with a patient’s other doctors 

9 to provide an extra layer of support. Palliative care 

10 is appropriate at any age and at any stage in a seri11 ous illness, and can be provided together with cura12 tive treatment. 

13 (5) Medical teams that help patients manage 

14 pain and stress during, alongside, and after treat15 ment provide patients with better quality of life. Evi16 dence-based research shows that such care may also 

17 lead to increased survival. These teams also reduce 

18 preventable suffering and caregiver breakdown. 

19 (6) Patients receiving palliative or coordinated 

20 care feel better and are more likely to keep their 

21 doctor’s appointments, complete their treatment, and 

22 take their medications. If patient disease-related and 

23 treatment-related symptoms such as pain, nausea, 

24 depression, fatigue, and breathlessness are managed, 

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1 ize, and take pleasure in things that can help them 

2 feel better emotionally and physically and help them 

3 fight chronic illness. 

4 (7) A 2010 Harris Interactive poll commis5 sioned by the American Cancer Society Cancer Ac6 tion Network (ACSCAN) among cancer patients, 

7 survivors, and their family caregivers found that 

8 fewer than one-third of the patients and survivors 

9 were asked by their doctor about what is important 

10 to such patients and survivors in terms of quality of 

11 life. In that same poll, fewer than one-third of the 

12 patients and survivors were asked if they were hav13 ing stress, depression, anxiety, or other emotional 

14 concerns related to the cancer or discussed ways to 

15 help with those emotional effects, though more than 

16 one-third of such patients and survivors said they 

17 had these emotional concerns. 

18 (8) A report commissioned by the Health Re19 sources Service Administration (HRSA) in 2002 

20 projected significant shortfalls in the number of pal21 liative medicine specialists in the United States and 

22 called for increased education and training in symp23 tom assessment and management and other pallia24 tive care core competencies across all clinical special25 ties serving seriously ill patients. Several Institute of 


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1 Medicine cancer reports, including on palliative care 

2 in 2001, survivorship in 2006, psychosocial care in 

3 2007, and pain in 2011 have also consistently sig4 naled the need for skills training to improve health 

5 professional communication with patients and fami6 lies regarding symptoms, establishing goals of care, 

7 tailoring treatments to those goals, and other quality 

8 of life concerns. 

9 SEC. 3. NATIONAL PATIENT-CENTERED HEALTH CARE AND 

10 QUALITY OF LIFE STAKEHOLDER STRATEGIC 

11 SUMMIT. 

12 (a) SUMMIT.—Not later than one year after the date 

13 of the enactment of this section, the Secretary of Health 

14 and Human Services shall convene a Patient-Centered 

15 Health Care and Quality of Life Stakeholder Strategic 

16 Summit (in this Act to be referred to as the ‘‘Summit’’) 

17 to be composed of individuals with appropriate expertise 

18 to— 

19 (1) analyze key health system barriers to pro20 viding patient-centered health care that integrates 

21 symptom management and other aspects of coordi22 nated or palliative care; and 

23 (2) identify strategic solutions for collectively 

24 addressing quality of life concerns for the rapidly ex25 panding population of patients and survivors facing 


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1 serious, complex, and chronic illness in the United 

2 States and for the families of such patients and sur3 vivors. 

4 (b) PARTICIPANTS.—The Summit shall include rep5 resentatives from at least the following: 

6 (1) Federal agencies, including— 

7 (A) the Department of Health and Human 

8 Services, including from the Centers for Disease 

9 Control and Prevention, the Health Resources 

10 and Services Administration, the Agency for 

11 Healthcare Research and Quality, the Centers 

12 for Medicare & Medicaid Services, and the Na13 tional Institutes of Health; 

14 (B) the Department of Veterans Affairs; 

15 and 

16 (C) the Department of Defense. 

17 (2) Private organizations, including— 

18 (A) health professional organizations that 

19 represent physicians, nurses, pharmacists, and 

20 social workers; 

21 (B) patient non-profit organizations (as 

22 defined in section 4(g)); 

23 (C) private health insurance organizations; 

24 (D) faith community representatives; and 


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1 (E) other professionals as deemed appro2 priate by the Secretary. 

3 (c) STEERING COMMITTEE.— 

4 (1) IN GENERAL.—The Secretary shall establish 

5 a Summit Steering Committee to plan the Summit, 

6 coordinate participants of the Summit, develop an 

7 agenda for the Summit that is in accordance with 

8 subsection (d), and draft a summary report detailing 

9 recommendations made by the participants of the 

10 Summit for a national strategic action agenda to im11 prove patient-centered care and quality of life (in 

12 this Act to be referred to as the ‘‘National Action 

13 Agenda’’) in accordance with subsection (d)(4). The 

14 Secretary shall appoint the representatives described 

15 in paragraph (2)(A) and shall seek nominations 

16 from relevant stakeholders and, from such nomina17 tions, appoint representatives described in paragraph 

18 (2)(B). 

19 (2) COMPOSITION.—The Summit Steering Com20 mittee shall consist of at least the following mem21 bers: 

22 (A) MEMBERS FROM FEDERAL AGEN23 CIES.— 

24 (i) The Secretary, who will serve as 

25 chair of the Committee. 


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1 (ii) Four representatives from Federal 

2 agencies described in subsection (b) (or 

3 any other Federal agency deemed appro4 priate by the Secretary), to be appointed 

5 by the Secretary. 

6 (B) MEMBERS REPRESENTING STAKE7 HOLDER ENTITIES.— 

8 (i) Six representatives of health pro9 fessionals (with each of such 6 representa10 tives having research, clinical, and teaching 

11 or mentoring expertise); 

12 (ii) Three representatives of patient 

13 advocacy organizations. 

14 (iii) One representative of a private 

15 health insurance organization. 

16 (iv) One representative of faith com17 munities. 

18 (v) Two physicians. 

19 (vi) Two nurses. 

20 (vii) One social worker. 

21 (d) AGENDA.—The agenda for the Summit shall 

22 focus on specific areas that include at least the following: 

23 (1) Improving communication and coordination 

24 of health care among primary care providers, med25 ical specialists, and other health professionals and 


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1 seriously ill patients and families of such patients to 

2 ensure that symptoms are managed and other qual3 ity of life needs are met to support the continued 

4 functioning and well-being of such patients. 

5 (2) Examining the appropriate roles of both 

6 physician and non-physician professionals (such as 

7 nurse practitioners, clinical social workers, physician 

8 assistants, and other patient or survivor navigators 

9 or case coordinators) in strengthening access to inte10 grated, coordinated, or palliative care across care 

11 settings for all seriously ill patients and families of 

12 such patients. 

13 (3) Examining the role of health information 

14 technology in promoting delivery of integrated care 

15 to such patients. 

16 (4) Developing recommendations for a National 

17 Action Agenda, which shall specify research, surveil18 lance, health information technology, workforce 

19 training, delivery of care, and communication activi20 ties required to collectively address barriers to 

21 achieving integrated palliative care for seriously ill 

22 patients in all care settings. Such agenda shall in23 clude strategies for reducing disparities among medi24 cally underserved populations. 


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1 (e) REPORT.—Not later than one year after the last 

2 day of the Summit, the Secretary of Health and Human 

3 Services shall submit to the Committee on Energy and 

4 Commerce of the House of Representatives and the Com5 mittee on Health, Education, Labor, and Pensions of the 

6 Senate a report on the recommendations made by the par7 ticipants of the Summit and shall make such recommenda8 tions available to the public. 

9 (f) SERIOUSLY ILL PATIENT DEFINED.—For pur10 poses of this Act, the term ‘‘seriously ill patient’’ means 

11 an individual who has a serious health condition (as de12 fined in section 101(11) of the Family and Medical Leave 

13 Act of 1993 (26 U.S.C. 2911(11)). 

14 (g) AUTHORIZATION OF APPROPRIATIONS.—There is 

15 authorized to be appropriated to carry out this section 

16 such sums as are necessary for each of the fiscal years 

17 2014 through 2018. 

18 SEC. 4. QUALITY OF LIFE PATIENT AND PROFESSIONAL 

19 AWARENESS GRANTS PROGRAM INITIATIVE. 

20 Title III of the Public Health Service Act (42 U.S.C. 

21 241 et seq.) is amended by adding at the end the following 

22 new part: 


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1 ‘‘PART W—PROGRAMS RELATING TO PALLIATIVE 

2 CARE 

3 ‘‘SEC. 399OO. QUALITY OF LIFE PATIENT AND PROFES4 SIONAL AWARENESS GRANTS PROGRAM INI5 TIATIVE. 

6 ‘‘(a) IN GENERAL.—Not later than 6 months after 

7 the date of the submission of the report by the Patient8 Centered Health Care and Quality of Life Stakeholder 

9 Strategic Summit under section 3(e) of the Patient Cen10 tered Quality Care for Life Act, the Secretary, through 

11 the Director of the Centers for Disease Control and Pre12 vention, shall establish a national quality of life education 

13 and awareness grants program initiative for seriously ill 

14 patients, families of such patients, and health profes15 sionals who treat such patients for the purposes of encour16 aging an increased demand for and delivery of integrated 

17 and patient-centered care for managing pain and symp18 toms of such patients and improving the quality of life 

19 of such patients. Under the initiative, the Secretary shall, 

20 subject to subsection (h), award competitive grants to eli21 gible entities described in subsection (b) to develop new 

22 and expand existing information, resources, and commu23 nication materials about symptom management and other 

24 aspects of patient-centered care as an integral part of 

25 quality care for serious illnesses such as cancer; heart, 

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1 ease and related dementias. Such materials shall be pre2 sented in a variety of formats (such as online, print, and 

3 public service announcement). 

4 ‘‘(b) ELIGIBLE ENTITIES.—For purposes of this sec5 tion, an eligible entity includes only a State health depart6 ment, community health center, State or territory pro7 gram supported by the National Comprehensive Cancer 

8 Control Program of the Centers for Disease Control and 

9 Prevention, health profession school, chronic disease or 

10 cancer center, academic medical center, physician practice, 

11 home health care agency, palliative care or psychosocial 

12 care team (as defined in subsection (g)), hospice program, 

13 patient non-profit organization (as defined in subsection 

14 (g)), clinical pastoral education program, long-term care 

15 facility, faith community organization, or other public or 

16 private entity or organization addressing patient-centered 

17 care and quality of life concerns of seriously ill patients. 

18 ‘‘(c) APPLICATION.—To be eligible to receive a grant 

19 under this section, an entity shall submit to the Secretary 

20 an application at such time, in such manner, and con21 taining such information as the Director may require, in22 cluding assurances that the entity will— 

23 ‘‘(1) evaluate programs carried out by the enti24 ty through a grant provided under this section; 


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1 ‘‘(2) submit to the Secretary a report on the 

2 findings of such evaluations; and 

3 ‘‘(3) coordinate the dissemination of such find4 ings with the Secretary. 

5 ‘‘(d) USE OF FUNDS.—An entity awarded a grant 

6 under this section shall use such grant to carry out pro7 grams described in subsection (e), for patients and fami8 lies of such patients that further the purposes described 

9 in subsection (a). 

10 ‘‘(e) PROGRAMS.—Programs described in this sub11 section, for which a grant awarded under this section may 

12 be used, include programs to— 

13 ‘‘(1) navigate the health system, including as14 sistance to patients with finding health professionals 

15 to support quality of life needs, care decision-making 

16 and coordination, and transitions across care set17 tings; 

18 ‘‘(2) provide general advocacy on behalf of pa19 tients and survivors to provide patients information 

20 to help them effectively communicate with health 

21 care providers about pain, physical and psychosocial 

22 symptoms, and barriers they are facing in adhering 

23 to curative or disease-directed treatments; 

24 ‘‘(3) encourage health professionals to request 

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1 tients that are integrated alongside disease directed 

2 treatment in various care settings; and 

3 ‘‘(4) collect and analyze data related to the ef4 fectiveness of the initiative under subsection (a). 

5 ‘‘(f) PRIORITY.—In carrying out the grant program 

6 under this section, the Secretary shall give priority to ap7 plications that include an emphasis on addressing out8 reach efforts for seriously ill patients who are among 

9 medically underserved populations (as defined in section 

10 1302(7)) and families of such patients or health profes11 sionals serving medically underserved populations. Such 

12 populations would include pediatric patients, young adult 

13 and adolescent patients, racial and ethnic minority popu14 lations, and other priority populations specified by the 

15 Secretary. 

16 ‘‘(g) DEFINITIONS.—For purposes of this section: 

17 ‘‘(1) PSYCHOSOCIAL CARE TEAM.—The term 

18 ‘psychosocial care team’ means health professionals 

19 focused on addressing social and emotional concerns 

20 of serious illness, and may include professionals such 

21 as social workers, psychiatrists, psychologists, 

22 nurses, child life specialists, teachers, chaplains, 

23 spiritual counselors, physical and occupational thera24 pists, nutritionists, integrative medicine specialists, 


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1 patient service coordinators, patient navigators, and 

2 patient representatives. 

3 ‘‘(2) PATIENT NON-PROFIT ORGANIZATION.— 

4 The term ‘patient non-profit organization’ means a 

5 nonprofit entity primarily engaged in raising funds 

6 for health-related research, such as disease preven7 tion, health education, and patient services. 

8 ‘‘(h) AUTHORIZATION OF APPROPRIATIONS.—There 

9 is authorized to be appropriated to carry out this section 

10 such sums as are necessary.’’. 

11 SEC. 5. PROFESSIONAL WORKFORCE TRAINING GRANTS 

12 PROGRAM INITIATIVE. 

13 Part W of title III of the Public Health Service Act, 

14 as added by section 4, is amended by adding at the end 

15 the following new section: 

16 ‘‘SEC. 399OO–1. PROFESSIONAL WORKFORCE TRAINING 

17 GRANTS PROGRAM INITIATIVE. 

18 ‘‘(a) INITIATIVE.— 

19 ‘‘(1) IN GENERAL.—Not later than 6 months 

20 after the date of the submission of the report by the 

21 Patient-Centered Health Care and Quality of Life 

22 Stakeholder Strategic Summit under section 3(e) of 

23 the Patient Centered Quality Care for Life Act, the 

24 Secretary, through the Administrator of the Health 

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1 lish a health care professional workforce training 

2 grants program initiative for the purposes of pro3 moting and enhancing symptom assessment and 

4 management, communications skills, coordinated pa5 tient-centered care, and other quality of life focused 

6 clinical core competencies (as described in paragraph 

7 (2)) across all clinical specialties that serve seriously 

8 ill patients and patients with multiple or complex 

9 chronic diseases, such as patients with cancer; heart, 

10 renal, and liver failure; lung disease; and Alz11 heimer’s disease and related dementias. Under such 

12 initiative, the Secretary shall, subject to subsection 

13 (i), award competitive grants to eligible entities to 

14 provide evidence-based training and develop new 

15 training for health professionals, including physi16 cians, nurses, social workers, and professional chap17 lains for the purposes described in the previous sen18 tence. 

19 ‘‘(2) QUALITY OF LIFE FOCUSED CLINICAL

20 CORE COMPETENCIES DESCRIBED.—For purposes of 

21 paragraph (1), quality of life focused clinical core 

22 competencies include, at a minimum, the assessment 

23 and management of physical, psychological, and 

24 spiritual symptoms; establishment of patient-cen25 tered goals of care; support to patient and family 


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1 caregivers; and management of transitions across 

2 care sites. 

3 ‘‘(b) ELIGIBLE ENTITIES.—For purposes of sub4 section (a), an eligible entity is an entity described in sec5 tion 399OO(b). 

6 ‘‘(c) APPLICATION.—To be eligible to receive a grant 

7 under this section, an entity shall submit to the Secretary 

8 an application at such time, in such manner, and con9 taining such information as the Secretary may require, in10 cluding assurances that the entity will— 

11 ‘‘(1) evaluate programs carried out by the enti12 ty through the grant provided under this section; 

13 ‘‘(2) submit to the Secretary a report on the 

14 findings of such evaluations; and 

15 ‘‘(3) coordinate the dissemination of such find16 ings with the Secretary. 

17 ‘‘(d) USE OF FUNDS.—An entity awarded a grant 

18 under this section shall use such grant to carry out pro19 grams described in subsection (e) to train health care pro20 fessionals described in subsection (a)(1) for the purposes 

21 described in such subsection. 

22 ‘‘(e) PROGRAMS.—Programs described in this sub23 section, for which a grant awarded under this section may 

24 be used, include programs to— 


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1 ‘‘(1) enhance health professional communication 

2 skills in caring for seriously ill patients and sur3 vivors, establishing goals of care, and tailoring treat4 ments; 

5 ‘‘(2) improve health profession identification of 

6 patient populations that benefit from coordinated 

7 palliative care and appropriate referral of patients 

8 for consultations with specialized interdisciplinary 

9 palliative care teams; 

10 ‘‘(3) improve health professional skills in symp11 toms assessment and management, developing com12 prehensive care coordination and discharge plans to 

13 support transitions across care settings, managing 

14 patients with complex or multiple chronic conditions, 

15 and preparing survivorship care plans; 

16 ‘‘(4) promote quality of life focused clinical core 

17 competencies (as described in subsection (a)(2)) 

18 across all clinical specialties serving seriously ill pa19 tients; 

20 ‘‘(5) provide technical assistance to hospitals 

21 and other care settings to establish coordinated pal22 liative care teams; 

23 ‘‘(6) create and expand coordinated palliative 

24 care leadership centers (as defined in subsection 

25 (h)); 


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1 ‘‘(7) provide mentoring and training to health 

2 professionals; 

3 ‘‘(8) improve cultural sensitivity communication 

4 and patient care for minority and medically under5 served populations, including by addressing the par6 ticular needs of children, adolescents, and families of 

7 such children and adolescents; racial and ethnic 

8 groups; and other medically underserved patient and 

9 survivor populations; and 

10 ‘‘(9) collect and analyze data related to the ef11 fectiveness of health professional education and 

12 training efforts carried out pursuant to this section. 

13 ‘‘(f) PRIORITY.—In carrying out the grant program 

14 under this section, the Secretary shall give priority to ap15 plications that include an emphasis on addressing out16 reach efforts for seriously ill patients who are among 

17 medically underserved populations (as defined in section 

18 1302(7)) and families of such patients or health profes19 sionals serving medically underserved populations. Such 

20 populations would include pediatric patients, young adult 

21 and adolescent patients, racial and ethnic minority popu22 lations, and other priority populations specified by the 

23 Secretary. 

24 ‘‘(g) STUDY.—Not later than one year after the date 

25 of the enactment of the Patient Centered Quality Care for 


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1 Life Act, the Secretary shall update and expand the Sep2 tember 2002 report of the Health Resources and Services 

3 Administration, titled ‘The Supply, Demand and Use of 

4 Palliative Care Physicians in the United States’. Such up5 date and expansion shall be based on an examination of 

6 workforce trends, workforce capacity, and training needs 

7 for palliative medicine physicians, physician assistants, 

8 nurse practitioners, and other palliative care team mem9 bers in all care settings in the United States, as well as 

10 training needs for other medical specialists and non-physi11 cian clinicians. 

12 ‘‘(h) PALLIATIVE CARE LEADERSHIP CENTER DE13 FINED.—For purposes of this section, the term ‘palliative 

14 care leadership center’ means a center— 

15 ‘‘(1) that trains hospital palliative care pro16 grams; 

17 ‘‘(2) that provides intensive operational training 

18 and mentoring for palliative care programs at every 

19 stage of development and growth; and 

20 ‘‘(3) that provides training oriented to teams 

21 rather than individuals, and involves participation by 

22 teams of hospital and hospice health care profes23 sionals involved in starting or running a palliative 

24 care program, including physicians, nurses, social 

25 workers, administrators and financial managers. 


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1 ‘‘(i) AUTHORIZATION OF APPROPRIATIONS.—There is 

2 authorized to be appropriated to carry out this section 

3 such sums as are necessary for each of the fiscal years 

4 2014 through 2019.’’. 

5 SEC. 6. QUALITY OF LIFE CROSS-AGENCY ADVISORY COM6 MITTEE. 

7 Part W of title III of the Public Health Service Act, 

8 as added by section 4 and amended by section 5, is further 

9 amended by adding at the end the following new section: 

10 ‘‘SEC. 399OO–2. QUALITY OF LIFE CROSS-AGENCY ADVISORY 

11 COMMITTEE. 

12 ‘‘(a) ESTABLISHMENT.—Not later than 90 days after 

13 the date of the enactment of this section and subject to 

14 subsection (e), the Secretary shall establish a Quality of 

15 Life Cross-Agency Advisory Committee (in this section to 

16 be referred to as the ‘Advisory Committee’) to advise, co17 ordinate, and assist the Centers for Disease Control and 

18 Prevention and the Health Resources and Services Admin19 istration in creating and conducting the national quality 

20 of life education and awareness initiative under section 

21 399OO and the health care professional workforce train22 ing initiative under section 399OO–1 and disseminate 

23 findings that have been identified from such initiatives for 

24 cross agency implementation of best practices. 


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1 ‘‘(b) MEMBERSHIP.—The Advisory Committee shall 

2 be composed of members who shall be appointed by the 

3 Secretary and shall include representatives of— 

4 ‘‘(1) the Department of Health and Human 

5 Services, including from the Centers for Disease 

6 Control and Prevention, the Health Resources and 

7 Services Administration, the Agency for Healthcare 

8 Research and Quality, the Centers for Medicare & 

9 Medicaid Services, and the National Institutes of 

10 Health; 

11 ‘‘(2) the Department of Veterans Affairs; 

12 ‘‘(3) the Department of Defense; 

13 ‘‘(4) public and private organizations with ex14 pertise in patient-centered care, palliative care, psy15 chosocial care, and symptom management and survi16 vorship; and 

17 ‘‘(5) such other representatives as the Secretary 

18 deems necessary. 

19 ‘‘(c) DUTIES.—The Advisory Committee shall— 

20 ‘‘(1) evaluate the results of the programs fund21 ed by the grants awarded under section 399OO(b) 

22 and under section 399OO–1(b); 

23 ‘‘(2) coordinate and implement a cross-agency 

24 strategic plan, with respect to the agencies specified 


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1 in subsection (b), to disseminate findings from such 

2 programs; 

3 ‘‘(3) advise the Secretary of Health and Human 

4 Services on strategies for disseminating across agen5 cies specified in subsection (b) recommendations 

6 from the National Action Agenda described in sec7 tion 3(c)(1) of the Patient Centered Quality Care for 

8 Life Act; 

9 ‘‘(4) consider and summarize recent advances 

10 achieved in symptom management and survivorship 

11 research relevant to the goals of this part and make 

12 recommendations to the Director of the National In13 stitutes of Health on gaps in basic, clinical, behav14 ioral, or other research required to achieve further 

15 improvements in care to support quality of life and 

16 survivorship; 

17 ‘‘(5) develop a strategy for developing new and 

18 enhancing health surveillance tools used to track 

19 symptoms, late effects, and quality care trends over 

20 time, including national surveys of the overall popu21 lation of the United States, such as the National 

22 Health Interview Survey and the Behavioral Risk 

23 Factor Surveillance System conducted by the Cen24 ters for Disease Control and Prevention and the 

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1 ducted by the National Institutes of Health, as well 

2 as administrative databases and disease registries 

3 such as databases of the Centers for Medicare & 

4 Medicaid Services, the Surveillance Epidemiology 

5 and End Results (SEER) cancer registries program 

6 of the National Cancer Institute, the SEER–Medi7 care Linked Database of the National Cancer Insti8 tute, and the National Program of Cancer Registries 

9 of the Centers for Disease Control and Prevention; 

10 and 

11 ‘‘(6) make appropriate updates and addendums 

12 annually to the National Action Agenda. 

13 ‘‘(d) MEETINGS.—The Advisory Committee shall 

14 meet at least once a year. 

15 ‘‘(e) AUTHORIZATION OF APPROPRIATIONS.—There 

16 are authorized to be appropriated to carry out this section 

17 such sums as are necessary for each of the fiscal years 

18 2014 through 2019.’’. 

19 SEC. 7. ENHANCING RESEARCH IN SUPPORT OF PATIENT 

20 QUALITY OF LIFE. 

21 (a) IN GENERAL.—Part W of title III of the Public 

22 Health Service Act, as added by section 4 and amended 

23 by sections 5 and 6, is further amended by adding at the 

24 end the following new section: 


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1 ‘‘SEC. 399OO–3. ENHANCING RESEARCH IN SUPPORT OF PA2 TIENT QUALITY OF LIFE. 

3 ‘‘(a) IN GENERAL.—The Secretary, acting through 

4 the Director of the National Institutes of Health, shall de5 velop and implement a strategy to be applied across the 

6 institutes and centers of the National Institutes of Health 

7 that is in accordance with recommendations of the Advi8 sory Committee established under section 399OO–2 to ex9 pand national research programs in symptom manage10 ment, palliative, psychosocial, and survivorship care. 

11 ‘‘(b) RESEARCH PROGRAMS.—The Director of the 

12 National Institutes of Health shall expand and intensify 

13 research programs in symptom management and pallia14 tive, psychosocial, and survivorship care and research pro15 grams that address the quality of life needs for the rapidly 

16 growing population in the United States of seriously ill 

17 patient (with illnesses such as cancer; heart, renal and live 

18 failure; lung disease; and Alzheimer’s disease and related 

19 dementias).’’. 

20 (b) EXPANDING TRANS-NIH RESEARCH REPORTING

21 TO INCLUDE QUALITY OF LIFE AND SURVIVORSHIP RE22 SEARCH.— 

23 (1) IN GENERAL.—Section 402A(c)(2)(B)(i) of 

24 the Public Health Service Act (42 U.S.C. 

25 282a(c)(2)(B)(i)) is amended by inserting ‘‘and for 

26 conducting or supporting research with respect to 


smartinez on DSK6TPTVN1PROD with BILLS
26 

•HR 1666 IH

1 quality of life and survivorship’’ after ‘‘or national 

2 centers’’. 

3 (2) EFFECTIVE DATE.—The amendment made 

4 by paragraph (1) shall apply with respect to reports 

5 required on or after January 1, 2014. 

Æ 


smartinez on DSK6TPTVN1PROD with BILLS