MBMH Issue 7

MyBlood MyHealth

Welcome to this edition of My Blood My Health, where we shine a spotlight on two of the most vital forces in hematology: the Complete Blood Count (CBC) and the Patient Voice in Clinical Trials.

At first glance, the CBC may seem like just another lab test a standard line item in a patient’s chart. But for individuals living with blood cancers and other hematological disorders, this humble test holds profound meaning. It’s often the first clue, the ongoing monitor, and the silent storyteller of what’s happening deep within. Whether tracking white cells, red cells, or platelets, a CBC paints the picture of disease status, treatment impact, and overall well-being. Understanding this test empowers patients to ask better questions, anticipatechanges,andpartnermoreeffectively intheircarejourney.

But data alone doesn’t change outcomes peopledo.That’swhythisissuealsoelevatesthe essential role of advocacy in clinical trials. As researchevolvestobemoreinclusive,innovative, and responsive, the patient voice is no longer a “nice-to-have” itisamust-have.

Fromdesigningmeaningfulendpointstobuilding trust in underrepresented communities, patients andadvocatesarehelpingtoshapethefutureof hematology research. They are not just participantsinclinicaltrials;theyareco-creators ofbetterscience.

Together, knowledge and advocacy form a powerful alliance We hope this issue equips you with both and inspires you to use your voice, ask questions,andleadwithcourage.

HealCanada'smissionistoempower patientstoaccessbetterandequitable services.We'redeeplygratefultoour readersfortheircontinuedinterestand support.Yourengagementdrivesusto produce insightful and valuable content that encourages patientcentricityinhealthcare

Thankyouforparticipatinginour journey, and welcome to this enlighteningissue!

Withgreathumilityforreadingout digitalmagazine,

Cheryl

Disclaimer: The Patient Advocacy Digital Magazine provides general information and resources to promote patient empowermentandawareness Thecontentisnotasubstitute for professional medical advice or treatment Always consult with qualified healthcare pro guidanceregardingyourspecificm CherylPetruk,

MyBloodMyHealth

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HealCanada

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Email:admin@healcanadaorg

ExecutivePublisher&EditorinChief

CherylPetruk

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HealCanadaStaff/Consultants

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MBMHScientificConsultants

Marketing&Outreach

HealCanada

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HealCanada–Anationalnot-for-profitorganizationdedicatedto advancingpatientadvocacythrougheducation,empowerment, andengagement

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©2025MyBloodMyHealthDigitalMagazineAllrightsreservedNo partofthispublicationmaybecopiedreproducedortransmittedin anyformwithoutpriorwrittenconsentofthepublisher

Educating Patients on CBCs, Bone Marrow Biopsies, and Diagnostic Insights and the Need forStrongerHealthLiteracyTools

Receivingbloodtestresultscanbeoverwhelming,especiallywhenunfamiliarmedicalterms like “hematocrit,” “neutrophils,” or “reticulocyte count” appear on a report with no explanation. For many patients, lab work is an essential part of understanding what’s happening inside their body, particularly in cases involving blood disorders, cancers, or chronicillnesses.Yetfartoooften,patientsreceivetheseresultswithlittlecontextorclarity.

Understanding blood counts is more than a technical skill it's a powerful step toward advocacy, self-awareness, and better health outcomes. This article offers patients and caregivers a practical, plain-language guide to interpreting common blood tests, including Complete Blood Count (CBC), bone marrow biopsies, and other vital diagnostics. It also explores how improved health literacy tools can empower patients, foster better communication with healthcare providers, and support more informed decisions about treatmentandcare.

Part1:WhyBloodCountsMatter

The human body relies on blood to deliver oxygen,fightinfections,andregulateessential functions.

When something changes in your blood, such as low red cells or an excess of white cells, it can be a clue that something deeper is occurring, ranging from infections to cancers toautoimmunediseases.

Blood counts are often the first signal that somethingisn’tright. A single lab result may not tell the whole story, but trends over time can reveal patterns that help doctors diagnose, monitor, and manage conditions. Understandingthe“why”behindyourlabwork canbealife-changingstep.

UnderstandingBloodCounts:APatient’sGuidetoLabResultscont'd

Part2:DecodingtheCompleteBloodCount(CBC)

ACompleteBloodCount(CBC)isoneofthemostcommonlyorderedbloodtests.Itprovides information about the different cells in your blood: red blood cells, white blood cells, and platelets.Here'swhatyouneedtoknow:

RedBloodCells(RBCs)

Function:Carryoxygenfromyourlungstotherestofyourbody.

Keyterms:

Hemoglobin(Hgb):Measurestheamountofoxygen-carryingprotein

Hematocrit(Hct):PercentageofbloodvolumemadeupbyRBCs.

MCV(MeanCorpuscularVolume):Theaveragesizeofredbloodcells.

Whattowatchfor:

Low RBCs, hemoglobin, or hematocrit may suggest anemia, which can result from blood loss,irondeficiency,orbonemarrowdisorders.

Highlevelsmightbeseeninconditionslikepolycythemiaveraorchronicdehydration.

WhiteBloodCells(WBCs)

Function:Defendthebodyagainstinfections

Differentialcount:BreaksdowntypesofWBCs:

Neutrophils:Firstresponderstoinfection.

Lymphocytes: Include T-cells and B-cells, which help fight viruses and produce antibodies.

Monocytes, eosinophils, and basophils: Less common, but play roles in immune responses.

Whattowatchfor:

HighWBCsmayindicateinfection,inflammation,orleukemia.

LowWBCsmaysignalbonemarrowproblemsoreffectsofchemotherapy

UnderstandingBloodCounts:APatient’sGuidetoLabResultscont'd

Platelets(PLTs)

Function:Helpbloodtoclotandstopbleeding.

Normalrange:Typicallybetween150,000–400,000permicroliterofblood.

Whattowatchfor:

Lowplatelets(thrombocytopenia):Riskofbruisingandbleeding

High platelets (thrombocytosis): May be reactive (due to inflammation) or a sign of a myeloproliferativeneoplasm.

Part3:BeyondtheCBC—OtherKeyBloodTests

WhiletheCBCisfoundational,othertestsprovidefurtherclues: ReticulocyteCount

Measures young red blood cells. High counts may suggest blood loss or hemolysis; low countsmaypointtobonemarrowfailure.

PeripheralBloodSmear

Amicroscopeviewofbloodcellsthatcanshowabnormalshapesorinclusions,usefulfor diagnosingleukemiaorhemoglobinopathies.

ErythropoietinLevels

A hormone that stimulates RBC production used to differentiate causes of anemia or polycythemia.

IronStudies,B12,andFolate

Helpdetermineifnutrientdeficienciesarecontributingtoanemia.

Part4:UnderstandingBoneMarrowBiopsies

When blood tests raise concern about how your blood cells are being made, your doctor may recommend a bonemarrowbiopsy.

WhatIsIt?

Abonemarrowbiopsyremovesasampleofbonemarrow (usually from the hip) to examine under a microscope. It providesadirectlookatyourbloodcellfactory.

WhyIt’sDone

Diagnosing blood cancers (like leukemia, lymphoma,ormyelofibrosis).

Evaluating unexplained anemia, low platelets, or abnormalwhitecellcounts

Stagingormonitoringcertaincancers.

WhatPatientsShouldKnow

It’softendoneunderlocalanesthesia

Youmayfeelpressure,butpainisusuallybrief. Resultstakeseveraldaysandarereviewedbyapathologist.

Understanding what the test is looking for and asking your healthcare provider to explain thefindings iscriticalforyourcomfortandconfidence.

UnderstandingBloodCounts:APatient’sGuidetoLabResultscont'd

Part5:AdvocatingforHealthLiteracy

Too many patients receive test results without guidance. A lack of clear, accessible health informationleadstoconfusion,fear,andunnecessaryanxiety.Itcanalsodelaycareorlead topoordecision-making.

WhyHealthLiteracyToolsAreNeeded

Interpretationmatters.Numbersdon’tspeakforthemselves. Clearexplanationsreducefear. Patientswhounderstandaremoreengagedintheircare.

CommonGapsinCommunication

Labreportsoftenuseabbreviationsorrangeswithnoexplanation. Portalsmayprovide“normal”vs“abnormal”resultswithoutcontext. Providersmayassumepatientsunderstandterminology.

Part 6: Tips for Patients—How to Read and Ask AboutYourLabResults

Herearesomepracticalstepspatientscantake: Askforacopyofyourlabresults. Always request your CBC and other diagnostic resultssoyoucantracktrendsovertime. Highlightwhat’soutsidethenormalrange If something is marked “high” or “low,” ask your providerwhatthatmeansforyourhealth.

Writedownyourquestions.

Beforeyourappointment,preparequestionslike: “Whatdoesthistestresultmean?”

“Is this a significant change from my last test?”

“Whatcouldbecausingthisresult?” “Doweneedtofollowupwithmoretests?” Usetrustedresources.

Checkreliablesourceslike: TheLeukemia&LymphomaSociety(LLS) MayoClinic CanadianCancerSociety MyBloodMyHealthbyHealCanada

UnderstandingBloodCounts:APatient’sGuidetoLabResultscont'd

Part7:EmpoweringtheBloodDisordersCommunity

For those living with blood cancers or rare hematological diseases, like myeloproliferative neoplasms (MPNs), aplastic anemia, or sickle cell disease, understanding lab work is a key partofnavigatingcare.Yetaccesstopersonalizedexplanationsremainsuneven.

ManyPatientOrganizationsareworkingtoassisttheirpatientpopulationswith:

Simplifydiagnosticlanguage.

Createpatient-centrededucationmaterials

Advocateforimprovedcommunicationbetweenprovidersandpatients.

Supportdigitaltoolsthatvisualizelabtrendsovertime.

Patient advocates are playing a vital role in shifting the system by pushing for better communicationandclearertools.

Part8:TheRoleofDigitalPlatformsandPatientPortals

Many healthcare systems now use online portals to share test results. While these tools are helpful, they often present data without explanation. To make these more patient-friendly, there’sagrowingcallfor:

Integrateddefinitionsandtooltipsonwhateachlabmeasuremeans.

Patientvideoswalkingthroughcommontesttypes

Visualgraphsshowinghowresultschangeovertime.

Color-codedalertsthatofferguidancewithoutcreatingpanic.

Patients can advocate for better digital experiences by providing feedback to hospitals and careproviders.

UnderstandingasaPathtoEmpowerment

Blood counts are more than numbers they’re clues about how your body is working and how your care should proceed. For patients, especially those with chronic or serious health conditions,interpretingtheselabresultscanbeconfusingwithoutsupport.

But knowledge is power. The more patients understand, the more confidently they can participate in decisions, ask the right questions, and advocate for themselves. Healthcare systems, providers, and advocacy organizations must continue working toward a world where health literacy is a right, not a privilege, and where no one is left to decode their diagnosisalone

TakeawayMessages

ACBCisacriticaltoolinevaluatinghealth,especiallyforpatientswithblooddisorders.

Bone marrow biopsies provide insight into the production of blood cells and help diagnoseseriousconditions.

Patientsshouldneverbeafraidtoaskforexplanationsorsecondopinionsontestresults. Healthliteracyresourcesshouldbesimple,accessible,andwidelyavailabletoall.

Patient advocacy can change the system by pushing for clearer communication, better tools,andinclusivecare

KnowYourTests

CompleteBloodCount(CBC)

A CBC is a routine blood test that evaluates your overall health and detects a variety of disorders.

Component WhatItMeasures WhatItMightIndicate

RedBloodCells(RBC) Oxygendeliverycapability

Hemoglobin(Hgb)

Hematocrit(Hct)

MeanCorpuscular Volume(MCV)

Oxygen-carryingproteinin RBCs

ProportionofRBCsinblood

SizeofRBCs

WhiteBloodCells(WBC) Immunesystemdefense

Platelets(PLT)

AdditionalLabTests

Clottingabilityofblood

Test WhyIt’sDone

ReticulocyteCount

IronStudies,B12,Folate

PeripheralBloodSmear

Flaggeditems(markedas“H”forhighor“L”forlow) UnderstandingBloodCounts:APatient’sGuidetoLabResultscont'd

Low=Anemia;High=Polycythemiaor dehydration

Low=Anemia;High=Lung/heartdisease, dehydration

SimilartoHemoglobininterpretations

High=B12/Folatedeficiency;Low=Iron deficiency

High=Infectionorleukemia;Low=Immune suppression

Low=Bleedingrisk;High=Inflammationor MPNs

Measuresnewredcellstoassessbonemarrowfunction

Detectsnutrientdeficienciesthatmaycauseanemia

Identifiesabnormalshapesorfeaturesofbloodcells

ErythropoietinLevel Evaluateshormonethatstimulatesredcellproduction

BoneMarrowBiopsy Examinesmarrowforbloodcancersorcellproductiondisorders YourLabReport—HowtoReadIt

ExampleTable:

QuestionstoAskYourDoctor

Bringyourlabreporttoyournextappointmentandconsiderasking: Whatdotheseresultsmeanformycondition? Arethesechangessignificantsincemylasttest? Couldanyoftheseresultsbecausedbymymedications? Whatfollow-uptestsoractionsareneeded? ShouldIbereferredtoahematologist?

TrackingYourLabTrends

Usethistemplatetorecordandcompareyourresultsovertime:

Tip:Usecolor-coding(greenfornormal,redforflagged)tovisualizechanges.

UnderstandingAbbreviations

TrustedResources

EducationalWebsites

Leukemia&LymphomaSocietyofCanada(LLSc)

CanadianCancerSociety

MyBloodMyHealth–HealCanada

LabTestsOnline

MobileApps

MyChart–Accessandtracklabresults.

CareClinic–Tracksymptoms,labs,andmedication. BloodCountsExplained–Appforunderstandingtestmeanings(ifavailableregionally).

AdvocateforYourself

Youhavetherighttoaccessyourtestresults. It’sOKtoaskforasecondopinion.

Youcanrequestareferraltoahematologist.

Askyourhealthcareteamtoexplainresultsinplainlanguage. Beinginformedisakeypartofyourtreatmentplan.Don’tbeafraidtospeakup.

WhentoSeekMedicalAttentionImmediately

CallyourhealthcareproviderorgototheER ifyouexperience:

Suddenbruisingorbleeding

Unexplainedfatigueorweakness

Feverwithlowwhitecellcounts

Shortnessofbreathorchestpain

Dizzinesswithlowhemoglobin

FinalThoughts

Understandingyourbloodworkcanfeellikelearning a new language, but you’re not alone. With the right tools, explanations, and support, you can take charge of your health. Use this guide as a companion,askquestions,andconnectwithpatient advocacy organizations who can help you every stepoftheway.

UnderstandingBloodCounts:APatient’sGuidetoLabResultscont'd

15QuestionstoAskYourDoctor

Ahandyguideforpatientstobringtotheirhealthcareappointments.

Generalunderstanding

1.Canyouexplainwhatthesetestresultsmeaninplainlanguage?

2.Whichofmyresultsareoutsidethenormalrange,andshouldIbeconcerned?

3.Howdotheseresultscomparetomyprevioustests?Arethereanytrends?

4.Whatcouldbecausinganyabnormalresults?

5.Aretheseresultstypicalforsomeonewithmyconditionortreatmentplan?

Follow-upandnextsteps

1.DoanyoftheseresultssuggestIneedmoretestsorareferraltoaspecialist?

2.Wouldyourecommendabonemarrowbiopsyorotherdiagnosticsbasedonthis?

3.ShouldIbemonitoringanyofthesevaluesregularly?Howoften?

4.DotheseresultsexplainthesymptomsI’vebeenexperiencing?

5.Isthisaone-timeissue,ordoesitindicateachroniccondition?

Medication&LifestyleImpact

1Couldanyofmymedicationsorsupplementsbeaffectingtheseresults?

2.AretherelifestylechangesIshouldconsiderbasedontheseresults?

3.WhatstepscanItaketoimprovemybloodcounts?(ifapplicable)

Learning&Support

1.CanyouwalkmethroughwhateachoftheCBCvaluesmeansformyhealth?

2.WherecanIfindtrustedresourcestohelpmeunderstandmylabresultsbetter?

Check out our website for some printer friendly resources to use in your physician appointments.www.healcanada.org

You can be asked to do a blood test, also known in medical jargon as a complete blood count(CBC).CBCisasetofteststhatprovidesinformationaboutaperson'sbloodcells,size, andquantity.

This test is relatively easy for patients. The analysis is performed by an automated hematology analyzer, which makes the results fast and cheap to obtain. The CBC is one of the most commonly performed medical tests because it provides much information on a person 'sgeneralhealth.

HowcanCBCbeused?

CBC can be done to monitor general health during annual checkups or to explore possible causes of symptoms. It can help diagnose medical conditions and check the health of your immunesystem.Itcandetectbloodcancers,anemia,infectionsandotherconditions. Anemia is a good example of the importance of CBC. It can have several causes, including nutritionaldeficiency(ironorvitamin)orageneticdisorder(sicklecelldisease,thalassemia). Bonemarrowfailureorbloodcancercanalsocauseanemia.Combiningdifferentelements oftheCBCcanhelpphysiciansunderstandwhatcausesanemia.

Blood count can also help to assess the impact of some medications. CBC analysis before surgicalprocedurescanminimizecomplications.

WhatCBCmeasure?

Thebloodiscomposedofplasmaandbloodcells.Inahealthy person,plasmaaccountsfor55%oftheblood.Plasmaisthe liquid portion of the blood, consisting of water, essential bloodproteins,andnutrients.

TheCBCwillmeasurethenumberandsizeofallbloodcells:

Redbloodcells(erythrocytes)

Whitebloodcells(leukocytes)

Platelets(thrombocytes)

RedBloodCells:

Red Blood cells are the blood's most abundant cells, representing45%ofthebloodvolume.Matureredbloodcells lackanucleus,givingthemaconcaveshape.Theymainly containaprotein(hemoglobin)whichtransportsoxygenand carbondioxide

Hemoglobinneedsirontoworkcorrectly,whichiswhyiron deficiencycancauseanemia.Hemoglobingivesthebloodits redcolour.

WhatmakesupyourCompleteBloodCountTestcont'd

Red Blood cells are the blood's most abundant cells, representing 45% of the blood volume.Matureredbloodcellslackanucleus,givingthemaconcaveshape.Theymainly containaprotein(hemoglobin)whichtransportsoxygenandcarbondioxide

Hemoglobinneedsirontoworkcorrectly,whichiswhyirondeficiencycancauseanemia.

Hemoglobingivestheblooditsredcolour.

IntheCBC,severalparametersareusedtoevaluateredbloodcells:

In the CBC, several parameters are used to evaluate red bloodcells:

Redbloodcellcount

Hemoglobin (Hg): This is the amount of hemoglobin in yourblood

Hematocrit (Hct): This is the percentage of your blood madeupofredbloodcells.

- Mean corpuscular volume (MCV): This is the average sizeofyourredbloodcells.

Mean corpuscular hemoglobin (MCH): This is the averagequantityofhemoglobinineachredbloodcell.

Red cell distribution width (RDW): This is the degree of differenceinredbloodcellsize.Iftheredbloodcellsare closetothesamesize,theRDWwillbelow.

WhiteBloodCells:

White blood cells are part of the immune system and helpyourbodyfightgerms Theyincludeseveraltypes ofcells,allofwhichhelpprotectyoufromdiseases.

A typical CBC counts all types of white blood cells. However, physicians can also request a white blood cell differential analysis, which counts all white blood cellsbytype.

Neutrophilsconstitute 60-70% of the circulating white blood cells. They are the first responder when a pathogen is detected; they prevent infections by ingesting and releasing enzymes to destroy invading bacteriaandfungi(2).

WhatispartofyourCompleteBloodCountTestcont'd

Neutrophilsconstitute60-70%ofthecirculatingwhitebloodcells.Theyare thefirstresponderwhenapathogenisdetected;theypreventinfectionsby ingesting and releasing enzymes to destroy invading bacteria and fungi (2).

Monocytes share neutrophils' " vacuum cleaner" function to fight infections, helpremovedamagedtissues,anddestroycancercells Still,theycanalso present pathogens to lymphocytes to stimulate the immune system's memory,whichisessentialtoimproveresponseovertime.

Lymphocytes are much more common in the lymphatic system than in blood.Therearethreesub-groupsoflymphocytes.

Bcellsmakeantibodiesagainstpathogenstoblockinvasionandfacilitate theirdestruction

T cells destroy cells presenting pathogen molecules and coordinate the immuneresponse.

Natural killer cells can destroy infected and cancerous cells that escape T cells.

Eosinophils compose about 2-4% of white blood cells in circulating blood. They primarily deal with parasitic infections They secrete chemicals that destroy large parasites, such as hookworms and tapeworms, that are too bigforanywhitebloodcelltoingest.Eosinophilsarealsothepredominant inflammatorycellsinallergicreactions(3).

Basophils the rarest white blood cells (less than 0.5%), are chiefly responsible for allergic response by releasing histamine, which causes the dilation of blood vessels They also secrete heparin, which inhibits blood clotting.Bothsubstancespromotethemovementofotherwhitebloodcells intoanarea

Platelets

Platelets are cell fragments that help your blood clot and control bleeding. They gather at the injured site, attach themselves to the bloodvessel,andattractotherplateletstoconnecttoeachotherto plug the hole. They also initiate the coagulation process and facilitatewoundhealing.

Whatarethenormalvalues?

Abnormal values will fall below or above the reference ranges. The referencerangevariesdependingonyourage,sex,andwhereyou live. Each parameter of the CBC can indicate a possible issue that needs further investigation. In Table 1, you can see a few examples ofpotentialcauses.

Thrombocytopenia (toneofcauses) Thrombocytosis (Bloodcancer)

Leucopenia(Infection, Bonemarrowdisease)

Leukocytosis (inflammation,Blood cancer)

EachparameteroftheCBCcanindicateapossibleissuethatneedsfurtherinvestigation.In Table1,youcanseeafewexamplesofpotentialcauses.

Asdiscussedearlier,combiningCBCparametersinformationcanhelppinpointunderlying causesandimprovediagnoses.Theaverageredbloodcellsize(MCV)versusthewidth distribution(RDW)canprovideadditionalinformationtoidentifythecauseofblooddisorders anddirecttheinterventionprecisely.SeeTable2thatthecombinationoftwoCBC parameterscanhelptheinvestigationanddirectfollow-uptests.

WhatispartofyourCompleteBloodCountTestcont'd

We hope this summary will help you understand the importance of blood tests and how to trackCBCresultsforyouandyourlovedones.

TheRoleofReal-WorldEvidenceinBloodCancerAdvocacy

CherylPetruk,MBA

TheRoleofReal-WorldEvidenceinBloodCancerAdvocacyexploreshowrealworldevidence(RWE)—datacollectedfrompatientsoutsideoftraditionalclinical trials—cantransformthelandscapeofbloodcancercareandpatientadvocacy.

ThearticlehighlightshowRWEbridgesgapsinclinicalunderstanding,supports equitableaccesstotreatment,andstrengthenshealthpolicydecisionsby reflectingdiversepatientexperiences.Throughexamplessuchaspatient-led registries,real-worldsurveys,andpartnershipswithregulatorsandindustry,the articleunderscoresthegrowingimportanceofRWEinshapingresearchpriorities, drugapprovals,andadvocacystrategies.ItconcludesbypositioningRWEasboth ascientifictoolandahumanrightsmechanismforadvancingbetteroutcomes forindividualslivingwithbloodcancers.

TheRoleofReal-WorldEvidenceinBlood CancerAdvocacy

ByCherylPetruk,MBA |MyBloodMyHealth DigitalMagazine

In the complex and rapidly evolving landscape of healthcare, especially within the field of hematology, the patient voice is no longer a peripheral input it is central to innovation, access, and equity. Real-world evidence(RWE),whichcaptureshowtherapiesperform outsidetheconfinesofrandomizedclinicaltrials(RCTs), is playing an increasingly crucial role in supporting this paradigmshift.Forpatientswithbloodcancerssuchas leukemia, lymphoma, myeloma, or myeloproliferative neoplasms (MPNs), real-world data (RWD) can mean the difference between theoretical efficacy and practical,life-improvingoutcomes.

RWEisnotjustascientificconcept;itisanadvocacytool.Bloodcancerpatientadvocacy organizationsareharnessingRWEtopushforbetterdrugapprovals,improvepatientaccess to therapies, and reshape healthcare policies to reflect lived experiences. This article explores the transformative potential of RWE in blood cancer advocacy, the ethical considerations it raises, and the collaborative responsibilities among patients, advocates, clinicians,industrypartners,andpolicymakers.

DefiningReal-WorldEvidenceinContext

Real-world evidence is the clinical evidence regarding the usage and potential benefits or risksofamedicalproductderivedfromtheanalysisofreal-worlddata.Unlikeclinicaltrials, which operate under controlled environments with strict inclusion/exclusion criteria, RWE reflects the outcomes of treatments in broader, more diverse patient populations patients ofvaryingages,comorbidities,socioeconomicbackgrounds,andracialidentities. SourcesofRWDinclude:

Electronichealthrecords(EHRs)

Insuranceclaimsandbillingdata

Patient-reportedoutcomes(PROs)

Patientregistries

Mobilehealthappsandwearabledevices

Together,thesesourcesprovideaholisticpictureofapatient'shealthjourney onethatcan often highlight gaps, barriers, and opportunities for better care that controlled trials may overlook.

TheRoleofReal-WorldEvidenceinBloodCancerAdvocacycont'd

WhyRWEMattersinBloodCancer

Blood cancers are complex, heterogeneous, and frequently rare in their subtypes, making RCTschallengingtoexecutewithbroadapplicability.Manypatientsareexcludedfromtrials due to age, coexisting conditions, or geographic limitations, creating an evidence gap that RWEisuniquelypositionedtofill.

Forinstance:

Olderadultswithacutemyeloidleukemia(AML)arefrequentlyunderrepresentedintrials butareoftenthemajorityaffectedbythedisease.

Black and Indigenous patients with lymphoma or multiple myeloma face systemic disparities in diagnosis, treatment, and outcomes. RWE can help quantify and correct theseinequities.

PatientswithMPNs,suchasmyelofibrosis,oftenendureyearsofunderdiagnosis RWEcan tracklongdiagnosticjourneysandsupportearlierinterventions.

By leveraging real-world data, advocacy groups can identify unmet needs, highlight disparities, and support health technology assessment (HTA) submissions with patientcentredperspectives.

RWEasanAdvocacyCatalyst

Blood cancer advocacy has historically been rooted in storytelling, giving voice to those facing uncertain futures, often navigating fragmented care. RWE gives statistical weight to thosestories,makingthemactionableinpolicy,funding,andresearch.

HerearefivewaysRWEiscatalyzingadvocacyefforts:

1.EmpoweringPatient-LedResearch

Organizations like Heal Canada, Leukemia & Lymphoma Society, and MPN Research Foundation are initiating and funding studies that integrate patient-reported outcomes, quality of life metrics, and social determinants of health. These studies provide nuanced insightsthatcanbetranslatedintotreatmentguidelinesorrecommendations.

2.ImprovingAccesstoTreatments

RWE supports reimbursement decisions by demonstrating how therapies perform in realworld settings In Canada, for example, CADTH and provincial drug programs increasingly consider real-world effectiveness data to make funding decisions, especially for costly therapieslikeCART-celltreatmentsorJAKinhibitors.

3.AcceleratingRegulatoryDecisions

Regulatory agencies like Health Canada, the FDA, and the European Medicines Agency are integrating RWE into accelerated pathways for rare and serious conditions. This is crucial in bloodcancerswheretimelyaccesscansignificantlyalterprognosis

4.FosteringInclusionandEquity

RWEhelpsrevealpatternsofexclusionintraditionalresearch.Whenbloodcancerdata includesmorediversepatientvoices,itenablesadvocacygroupstopushforculturally competentcare,translationservices,andequitableclinicaltrialdesigns.

5.BuildingGlobalAdvocacyNetworks

RWEenablespatientadvocacygroupstoconnectacrossborders.Globalregistries,suchas theMyelofibrosisRegistryortheGlobalLeukemiaRegistry,helpmaptreatmentpatterns internationally,creatingsharedplatformsforadvocacyandpolicychange.

EthicalConsiderationsinUsingRWE

Astheuseofreal-worldevidenceexpands,sodotheethicalconsiderations,particularly aroundpatientdata,consent,andprivacy

1.InformedConsent:

Patientsmustunderstandhowtheirdatawillbeused,andconsentshouldbeclear,ongoing, andeasilywithdrawable.

2.DataOwnershipandTransparency:

AdvocatesmustfightfortransparencyinhowRWDiscollectedandused.Whoownsthedata —the patient, the provider, or a third-party registry? Transparency builds trust and accountability.

3.RepresentationandEquity:

IfRWDdoesnotrepresentthefullspectrumofpatientexperiences ruralpatients,lowincome individuals, marginalized communities then RWE risks perpetuating existing inequities.

4.IndustryCollaboration:

AdvocacygroupsworkingwithpharmaceuticalcompaniestogenerateRWEmustnavigate potentialconflictsofinterest.Stronggovernanceframeworksarecriticaltomaintaining credibilityandethicalrigour.

TheAdvocate’sRoleinRWE

Patient advocates are essential stakeholders in the generation, interpretation, and applicationofRWE.Here’showtheycanengage:

1.ChampioningPatientRegistries

Encouragepatientstoparticipateindisease-specificregistries.Advocate-ledregistriesoften offerpatientsachancetoguideresearchpriorities,ensuringthedatacollectedismeaningful tothem.

2.Co-DesigningStudies

Workwithresearchersandindustrypartnerstoco-designprotocolsthatincludereal-world endpoints,suchasdaysspentathome,emotionalwell-being,andtreatmentburden.

3.MobilizingCommunities

Use digital platforms, community forums, and social mediatoeducatepatientsontheimportanceofRWEand how participation in RWD initiatives supports collective change.

4.TranslatingtheScience

Advocates act as “bridge builders” translating complex RWE findings into actionable insights for patients, caregivers, and policymakers. This includes simplifying infographics,policybriefs,andexplainervideos.

5.HoldingSystemsAccountable

UseRWEfindingstoholdhealthcaresystemsaccountable fordisparitiesincaredelivery.Pushforpolicyinterventions whenreal-worlddatarevealsavoidableharmorsystemic gaps

SuccessStories:RWEinAction

CART-CellTherapyAccessinCanada

Real-worldstudiesshowedimprovedsurvivaloutcomesin patients with relapsed/refractory diffuse large B-cell lymphoma treated with CAR T therapy, especially in populations underrepresented in trials. These findings contributed to provincial funding decisions across Canada.

MPNPatientRWE/Surveys byHealCanada

Heal Canada’s real-world survey on MPN patients uncovered diagnostic delays averaging three years and highlighted significant unmet needs in fatigue management and mental health. These findings are included in reports and to advocate for better specialist referralpathways TheRoleofReal-WorldEvidenceinBloodCancerAdvocacycont'd

TheRoleofReal-WorldEvidenceinBloodCancerAdvocacycont'd

UK’sBloodCancerAllianceDataCollaboration

Patient organizations partnered with NHS Digital to identify disparities in treatment initiation times between different ethnic groups. The findings prompted policy changes to standardize earlyinterventions.

Looking Ahead: Future Opportunities for RWE in Blood Cancer Advocacy

As digital health tools become more sophisticated, the opportunitytogeneratehigh-qualityRWEexpands:

Wearables & Apps: Devices that track symptoms, mobility, and adherencecanprovidereal-timeRWD.

AI and Predictive Analytics: Machine learning models can identify patterns in large datasets that suggest earlier interventionpointsortreatmentoptimizationpathways.

GlobalDataCollaboration: Cross-border data pooling can offer broaderinsightsintorarehematologiccancers,improvingglobal standardsofcare.

Advocacy organizations must remain at the forefront of these changes ensuring that RWE doesn’t just serve scientific progress,buthumandignityandequity.

MakingEvidenceMatter

The shift toward real-world evidence in hematology reflectsabroadertruth:thatevidenceisnotjustdata it is people. Behind every metric is a patient who deserves to be seen, heard, and healed. Advocacy organizations have an unparalleled opportunity— andresponsibility toguidetheethicaluseofRWEin ways that center lived experience and drive real change.

By fostering collaboration between patients, clinicians, researchers, and policymakers, the blood cancer community can harness the full potential of RWE to shape a more just, inclusive, and effective healthcaresystem.

Legislative Advocacy for Blood Health: How Policy Changes CanImprovePatientOutcomes

CherylPetruk,MBA

Blood health policies play a critical role in ensuring that patients with hematological malignancies and blood disorders receive timely diagnoses, effectivetreatments,andcomprehensivecare.Fromfundingforresearchto equitable access to life-saving therapies, legislative decisions shape the healthcare landscape for millions of patients worldwide. Legislative advocacy is a powerful tool for influencing these policies, ensuring that patient voices are heard and that systemic improvements lead to better outcomesforbloodcancerandblooddisorderpatients.

LegislativeAdvocacyforBloodHealth:How PolicyChangesCanImprovePatient Outcomes

ByCherylPetruk,MBA

Blood health is an essential component of overall wellness, yet it is often overlooked in broader healthcare policy conversations. For the millions of individuals living with blood disorders—ranging from iron deficiency anemia and hemophilia to blood cancers such as leukemia, lymphoma, and myelofibrosis public policy decisions directly influence access to care,timelydiagnosis,treatmentaffordability,andlong-termoutcomes.Legislativeadvocacy hasemergedasapowerfulforcetoclosegapsinthehealthcaresystem,addressinequities, andensurethatbloodhealthbecomesapolicypriority.

This article explores how policy change and legislative advocacy can significantly enhance patient outcomes in the realm of blood health We examine the key policy levers affecting blood disorder patients, highlight examples of successful advocacy efforts, and provide a roadmapforpatientadvocatestoengageinlegislativechange.Whetherit’sensuringfunding for rare disease research or influencing drug reimbursement pathways, legislative advocacy isnotjustasupplementaryeffort itiscentraltosystemicchange.

UnderstandingLegislativeAdvocacyinHealthcare

Legislative advocacy refers to efforts aimed at influencing laws and regulations through engagementwithpolicymakers,includingelectedofficialsandgovernmentagencies.Itoften involves:

Educatinglegislatorsonhealthcareissues

Proposingnewlawsoramendments

Supportingoropposingproposedlegislation

Testifyingatlegislativehearings

Participatinginpublicconsultations

Inthecontextofbloodhealth,legislativeadvocacyfocusesonimprovingthesystemofcare for individuals with hematological conditions by addressing issues like research funding, diagnosticpathways,equitabledrugaccess,reimbursementcriteria,andpatientrights

Legislative Advocacy for Blood Health: How Policy Changes Can Improve PatientOutcomescont'd

WhyBloodHealthNeedsaStrongLegislativeVoice

Blooddisordersareoftenunderfundedandmisunderstood,especiallyinrareandchronic categoriesSomereasonswhybloodhealthadvocacyissourgentinclude:

DelayedDiagnoses:Manyblooddisorders,suchasmyeloproliferativeneoplasms(MPNs), areunderdiagnosedormisdiagnosedduetoalackofawarenessandlimitedaccessto hematologists.

TreatmentInequity:Accesstomedicationscanvarydramaticallybyprovinceorinsurance planinCanadaandstate-by-stateintheU.S.,leavingpatientsinlimbo.

LackofDataCollection:Rarediseasesoftenfalloutsidetraditionalhealthinformation systems,hinderingpopulationhealthplanning.

UnderrepresentationinResearch:

Certainpopulations—ethnicminorities,ruralresidents, andlow-incomeindividuals—areoftenleftoutofclinicalresearchandpolicymaking. Legislativeadvocacyhasthepowertochangeallofthisbyensuringpolicyframeworks recognizeandsupporttheuniqueneedsofindividualswithblooddisorders.

KeyLegislativePrioritiesforBloodHealthAdvocates

AccesstoTimelyandEquitableDiagnosis

Early diagnosis is critical for effective treatment. Legislative advocacy can push for standardizeddiagnosticprotocols,ensureappropriategeneticandmoleculartestingis covered,andmandateshorterreferraltimelinestospecialists.InCanada,waittimesfor hematologistscanextendfromweekstomonths,toolongforpatientswithaggressiveblood cancersorcomplexdisorders.

FundingforRareDiseaseResearchandRegistries

Advocates can influence budget allocations toward blood disorder research, including fundingfordisease-specificregistriesthatsupportepidemiologicalinsightsandclinicaltrial recruitment.

DrugApprovalandReimbursementReform

Manyblooddisorderpatientswaityearsfornewtreatmentsto beapprovedbyHealthCanada,thenfaceadditionaldelaysfor reimbursementdecisionsbyprovincialorprivatedrugplans. Legislativereformisneededto:

Speeduphealthtechnologyassessments(HTAs)

Incorporatereal-worldevidenceindecision-making

Ensurepatientvoicesareincludedinpricingdecisions

WorkplaceProtectionsandLeavePolicies

Blood cancer treatments often require long-term leave Advocacy can lead to legislative changes that expand sick leave,protectjobsecurity,andprovideincomereplacement. Legislative efforts have successfully expanded Employment Insurance(EI)benefitsforcriticallyillCanadiansandshouldbe extendedfurtherforchronicdiseasepatients.

NationalBloodStrategy

Canada lacks a unified national blood health strategy. A coordinatedfederalplancouldalignprovincialresources,guide researchinvestments,andimprovepatientaccessacrossthe spectrumofblooddisorders.Thishasbeenatoplegislative priorityforgroupsliketheCanadianHemophiliaSocietyand otherbloodfocusedpatientadvocacyorganizations

Legislative Advocacy for Blood Health: How Policy Changes Can Improve PatientOutcomescont'd

CaseStudy:AdvocatingforMPNPatientNeeds

In2023–2024,HealCanadaanditssignatureprogramMyBloodMyHealthconducted advocacyoutreachbasedonfindingsfromtheMPNPatientSurvey.Resultsrevealed:

67%experiencedadiagnosticdelayofmorethantwoyears

82% had never received mental health support despite fatigue and depression being common

Importantconclusionsfrompatientsurveysandinformationare:

Inclusionofbloodcancersinrarediseasedrugfundingframeworks

Mentalhealthscreeningaspartofstandardcare

Fundingformoleculardiagnostictestingattheprimarycarelevel

InternationalPerspectives:LegislativeWinsAroundtheGlobe

UnitedStates:AcceleratedApprovalsandthe21stCentury CuresAct

TheU.S.hasimplementedlegislationlikethe21stCenturyCures Act,whichsupportsfasterdrugapprovalsandstrengthensthe inclusionofpatientperspectivesinFDAdecision-making.Blood cancer organizations such as the Leukemia & Lymphoma Societyhavebeeninstrumentalinlobbyingforthesereforms.

Europe:EURareDiseaseStrategy

The European Union’s strategy on rare diseases includes mandatesformembercountriestodevelopnationalplans. Manycountrieshaveimplementedpathwaysforearlyaccess andpatientinvolvementinHTAprocesses,influencingcarefor rarebloodcancersandbleedingdisorders.

United Kingdom: All-Party Parliamentary Group on Blood Cancer

Thisgrouphasadvocatedforanationalstrategyonblood cancerintheUK.Their2018reportinfluencedNHSEngland’s long-termplantorecognizebloodcancerasapriorityarea and improve access to care, particularly for marginalized groups.

Legislative Advocacy for Blood Health: How Policy Changes Can Improve PatientOutcomescont'd

TheAdvocacyToolbox:HowtoInfluencePolicy

Legislative advocacy can feel daunting, but a structured approach helps patient advocates makeameasurableimpact.

Step1:IdentifytheIssue

Definethespecificpolicyproblemaffectingpatients.Isitdelayedaccesstoatherapy?Lack ofcoveragefordiagnostics?Inconsistentreferralpatterns?

Step2:CollectEvidence

Support your issue with data clinical studies, patient surveys, economic analysis, or testimonials. Real-world evidence is especially powerful in underscoring gaps between guidelinesandlivedexperiences.

Step3:BuildaCoalition

Partnerwithotherpatientorganizations,medicalsocieties,andindustrystakeholders.Unified voicescarrymoreweightinlegislativemeetingsandpublicconsultations.

Step4:EngageLegislators

Schedule meetings with Members of Parliament, provincial health ministers, or agency directors.Comepreparedwith:

Apersonalstorytohumanizetheissue

Evidencetoshowimpactonoutcomesandcosts

Step5:LeveragePublicPlatforms

Usedigitalcampaigns,op-eds,petitions,andsocialmediatoraiseawareness.Platformslike Twitter,LinkedIn,andadvocacy-specificforumshelpconnectwithpolicymakersandamplify yourmessage

Step6:FollowUpandStayEngaged

Policy change takes time. Continue following up, provide updates on your advocacy efforts, andkeepbuildingmomentumuntiltheissueisaddressed.

Legislative

Advocacy for Blood Health: How Policy Changes Can Improve PatientOutcomescont'd

RoleofPatientOrganizationsinLegislativeAdvocacy

Patient-led organizations like Heal Canada, the Canadian Organization for Rare Disorders (CORD),andtheCanadianCancerSocietyarecriticalcatalystsforlegislativeadvocacy.

They provide policy literacy training for patients and caregivers and host advocacy days at provinciallegislatures.

Collaboratewithresearcherstopresentevidence-basedrecommendations

Developeducationalmaterialsforpolicymakers

Organizeroundtablesbetweenpatients,regulators,andpharmaceuticalcompanies.

By equipping patients to be policy participants—not just recipients—these organizations are redefiningwhatmeaningfuladvocacylookslike.

ChallengesandOpportunities Challenges

BureaucraticDelays:Legislativetimelinesareoftenslowandunpredictable.

Lack of Awareness: Policymakers may not understand the urgency or complexity of blood healthissues.

FundingConstraints: Manyadvocacyorganizationsoperateonlimitedbudgetsandrelyon volunteerefforts.

Opportunities

DigitalAdvocacy: Virtual meetings and online petitions make it easier than ever to engage decision-makers.

Public Sentiment: There is growing societal support for patient-centred care and equity in healthcareaccess

Policy Windows: Government reviews, budget consultations, or elections create opportunitiestoelevatebloodhealthonpoliticalagendas.

LookingForward:LegislativePrioritiesfor2025andBeyond

As we look ahead, here are five policy goals for the blood health advocacy community to unitearound:

A Pan-Canadian Strategy for Blood Health: Develop a unified approach to diagnosis, treatment,andresearchthatensuresconsistencyacrossprovinces.

Legislative Advocacy for Blood Health: How Policy Changes Can Improve PatientOutcomescont'd

InclusionofPatient-ReportedOutcomesinHTAProcesses

Mandatethatpatientvoicesandlivedexperiencesareincludedineveryassessmentofnew therapies.

LegislativeSupportforEarlyMolecularDiagnostics

Enshrinereimbursementpoliciesthatcovernext-generationsequencingandmolecular testsforbloodcancers.

ExpandedCompassionateAccessPrograms

Advocatefornationalframeworksthatensurepatientscanaccesslife-savingmedications whiletheyawaitfundingdecisions.

PermanentGovernment-FundedPatientAdvocacyTraining

Securefundingforpatientadvocatestoreceiveformaltrainingandcertification,ensuring sustainedandinformedlegislativeengagement.

Legislativeadvocacyisnotaluxury—itisalifeline. For individuals living with blood disorders, policy decisions shape every aspect of the care journey—from diagnosis to treatment,tosurvivorshipandbeyond.Throughstructured,sustainedadvocacy,wecan transformindividualstrugglesintocollectiveprogress.

Patientstories,whenbackedbyreal-worlddataanddeliveredwithstrategy,havethe powertorewritelegislationandreshapehealthcaresystems.Bymakingbloodhealtha legislativepriority,wecanensurethatfuturepatientsfacefewerbarriers,receivefaster diagnoses,andaccesstheinnovativetherapiestheydeserve.

Letthisbeourcollectivecalltoaction:toadvocateboldly,legislatewisely,andensurethat everyvoice especiallythosetoooftensilenced isheardwhereitmattersmost:inthehalls ofpower.

CACHEducationisevolvingtobetterservetheneedsofpatientadvocatesand healthcareprofessionalswithitsrebrandtoCACHEducationAcademy.This transformationreflectsanexpandedcommitmenttodeliveringhigh-quality, structuredlearningexperiencestailoredtotheever-changinglandscapeof patientadvocacyandhealthcareeducation.Aspartofthisrebrand, CACHEducationAcademywillintroduceAdvancedCurriculumofferings startinginSeptember2025,providingdeeperinsights,specializedtraining,and enhancedskilldevelopmentforthoselookingtoelevatetheirexpertise.This nextphasemarksasignificantstepforwardinstrengtheningthecapacityand impactofpatientadvocatesthroughcomprehensiveandinnovative education. "EnrollinginCACHEducationwasagame-changerformeasapatient advocate.Theprogramprovidedinvaluableknowledge,practicalskills,

WhyPatientAdvocacyIs

WhyPatientAdvocacyIsEssentialintheHealthcareEcosystem

byCherylPetruk,MBA

Inanincreasinglycomplexandfragmented healthcare system, patient advocacy has emergedasavitalforceforensuringthat individualsreceiveequitable,informed,and compassionate care Whether through individual advocates, community organizations, or systemic policy efforts, patient advocacy plays a pivotal role in bridging gaps between patients and providers,safeguardingpatientrights,and drivingimprovementsinhealthcaredelivery. This article explores the multifaceted importanceofpatientadvocacywithinthe healthcare ecosystem, highlighting its impact on individual outcomes, systemic change,andhealthequity.

DefiningPatientAdvocacy

Patientadvocacyencompassesactionsand supportaimedatpromotingandprotecting patients' rights, interests, and well-being within the healthcare system. Advocates may be healthcare professionals, trained individuals, or organizations that assist patients in navigating medical decisions, accessing services, and voicing concerns. Their responsibilities include ensuring informed consent, facilitating communication between patients and providers,andaddressingsystemicbarriers tocare.

Empowering Patients and Enhancing Outcomes

One of the core functions of patient advocacy is empowering individuals to actively participate in their healthcare decisions.

By providing education and support, advocates enable patients to make informed choices, leading to improved satisfaction and health outcomes. For instance, the Choosing Wisely Canada campaign encourages conversations between clinicians and patients about unnecessary medical interventions, promoting evidence-based care and reducingpotentialharm

Moreover, patient advocacy can lead to tangible improvements in care quality. A studypublishedinNursingEthicsfoundthat nurse-led advocacy efforts contributed to better patient safety and satisfaction by ensuring that care decisions aligned with patients'valuesandpreferences

Patient advocacy is instrumental in addressinghealthdisparitiesandpromoting equity, particularly among marginalized populations. Advocates work to dismantle systemicbarriersthatcontributetounequal access to care, such as socioeconomic status,race,andlanguagedifferences.

Forexample,healthadvocateshavebeen pivotal in implementing culturally tailored strategiestoimprovehealthcareaccessfor immigrant populations, addressing critical barrierslikelanguagegapsandunfamiliarity withhealthcarenavigationprocesses).

WhyPatientAdvocacyIsEssentialintheHealthcareEcosystemcont'd

Personal narratives also underscore the importance of advocacy in combating healthcare bias. Brooke Abbott Abron, an advocate for individuals with inflammatory bowel disease, shared her experience of navigatingthehealthcaresystemasaBlack woman facing medical gaslighting and delayed diagnosis. Her story highlights the necessity of patient advocacy in ensuring that marginalized voices are heard and respectedwithinmedicalsettings.

The Role of Healthcare Professionals in Advocacy:

Healthcareprofessionals,particularlynurses, are integral to patient advocacy. The American Nurses Association emphasizes thatadvocacyisafundamentalaspectof nursing, involving the promotion and protectionofpatients'rightsandinterests. Nurses often serve as intermediaries between patients and the broader healthcare system, ensuring that care is patient-centredandethicallysound

Influencing Health Policy and Systemic Change

Beyondindividualsupport,patientadvocacy playsacrucialroleinshapinghealthpolicy and driving systemic change. Advocacy effortshaveledtosignificantpolicyreforms, suchastheAIDSCoalitiontoUnleashPower (ACT UP) influencing HIV/AIDS treatment policies and the "right to be forgotten" movement impacting cancer survivorship rights(HealthPolicyPartnership,2024).The HealthPolicyPartnership Organizations like the Patient Access Network (PAN) Foundation exemplify how advocacy can lead to broader access to care.

However, nurses may face challenges in theiradvocacyroles,includinginstitutional constraintsandpotentialconflictsbetween organizational policies and patient needs. Addressing these barriers requires institutionalsupportandacommitmentto fosteringanenvironmentwhereadvocacyis valuedandfacilitated.

WhyPatientAdvocacyIsEssentialintheHealthcareEcosystemcont'd

Technological Advancements and Digital Advocacy

The advent of digital health technologies has expanded the scope of patient advocacy. Platforms like Solace connect patients with healthcareadvocatestoassistwithtaskssuchas appointment scheduling and navigating insurance complexities The integration of such services into Medicare coverage reflects a growing recognition of the importance of advocacy in enhancing care coordination and patientexperience.

Additionally,onlinecommunitieslikeSuperbloom provide support networks for individuals with chronic illnesses, offering resources and a platform to share experiences. These digital spaces empower patients to advocate for themselves and others, fostering a sense of communityandsharedpurpose.

Patient advocacy is a cornerstone of a responsive and equitable healthcare system. By empowering individuals, addressing disparities, influencing policy, and embracing technological innovations,advocacyensuresthatpatientvoices are central to healthcare delivery. As the healthcare landscape continues to evolve, the role of patient advocacy will remain essential in promoting health, dignity, and justice for all individuals

ClinicalTrials and Surveys

ClinicalTrialsinHematologicalDiseases:AVitalJourneyThrough thePatient’sLens

ByCherylPetruk,MBA

Clinical trials are the backbone of medical advancement. They bring innovation to life, transforming theoretical possibilities into tangible treatment options. For patients with hematologicaldiseases—rangingfromleukemia,lymphoma,andmyelomatoraredisorders like myeloproliferative neoplasms (MPNs) clinical trials are more than just a research mechanism.Theyarealifeline,asourceofhope,andapivotalmeansofaccessingcuttingedge therapies. But while their scientific value is well understood, the patient perspective remainsunderrepresentedinthebroaderdiscourse.Thisarticleexploresthecrucialroleof clinical trials in hematology through the eyes of the patient, addressing the emotional, practical,ethical,andsystemicdimensionsthatdefinetheirparticipationandexperience.

ThePatient-CentricViewofClinicalTrials

From the patient's point of view, participating in a clinical trial is not merely a medical decision it is deeply personal, often complex, and laden with hope, fear, and trust. The decisiontojoinatrialmaybedrivenbyseveralfactors:thelimitationsofexistingtreatments, thedesireformoretime,thehopeforimprovedqualityoflife,orthealtruisticmotivationto helpfuturepatients.

For many with hematologic conditions, standard therapies can become ineffective over time.Forexample,patientswithmyelofibrosismayexperienceprogressiondespitefrontline treatments. Others with chronic lymphocytic leukemia (CLL) may relapse after standard regimens.Clinicaltrialsofferaccesstonoveltherapiessuchastargetedagents,CART-cell therapy,orbispecificantibodiesthatmightnototherwisebeavailableoutsidearesearch setting.

EmpowermentThroughParticipation

Clinical trials empower patients by placing them at the center of innovation. Rather than beingpassiverecipientsofcare,patientsbecomeactivecontributorstoscientificdiscovery Thisempowermentoftentranslatesintoasenseofpurpose,asmanypatientsfindmeaning inhelpingtogenerateknowledgethatmaybenefitothersinsimilarsituations.

AccesstoInnovation

Forsome,clinicaltrialsprovideaccesstocutting-edgetherapiesnotyetavailableinclinical practice.Thesemayincludegeneticallyengineeredcelltherapies,monoclonalantibodies,or oralinhibitorsthataddressdiseasepathwayswithgreaterspecificity.Forpatientswithrare hematological disorders or treatment-resistant disease, trials may offer the only viable optionforextendinglifeorimprovingsymptoms

Clinical Trials in Hematological Diseases: A Vital Journey Through the Patient’sLenscont'd

ChallengesPatientsFaceinClinicalTrials

Whilethepotentialbenefitsaresignificant,participatinginaclinicaltrialisnotwithout challenges.Patientsfacelogistical,psychological,andinformationalhurdlesthatmustbe acknowledgedandaddressed.

UnderstandingtheTrial

Medical jargon, long consent forms, and complex protocols can overwhelm patients. Understandingthedifferencebetweenphasesofclinicaltrials PhaseI(safety)Phase1tests initial safety in small groups (20-100 people), Phase II (efficacy) Phase 2 evaluates effectiveness(upto300people),PhaseIII(comparativeeffectiveness)Phase3comparesto existingtreatments(300-3,000people) andinterpretingoutcomeslikeprogression-free survivaloroverallresponseratecanbedauntingwithoutadequatesupportandinsome casesPhase4monitorslong-termeffectsafterFDA,CDAorotherregulatoryauthority approval.

NavigatingEligibilityandAccess

Noteverypatientiseligibleforeverytrial.Inclusionandexclusioncriteriamaydisqualify patientsbasedonfactorssuchasprevioustreatments,organfunction,orage.Geographic locationcanalsobeabarrier.Manytrialsareconductedinlargeacademiccenters,making participationdifficultforruralorunderservedpopulations.

LogisticalandFinancialStrains

Although study-related medications and tests are typically covered, indirect costs transportation,accommodation,childcare,ortimeoffwork canbeburdensome.These financialandpracticalconsiderationsoftendisproportionatelyaffectlow-incomepatients, limitingtheirparticipation

EmotionalandPhysicalToll

Participatinginatrialmayrequiremorefrequenthospitalvisits,bloodtests,andmonitoring, whichcanbephysicallyexhausting.Theemotionaltollofnotknowingwhetherthetreatment willworkorwhetheroneisinaplacebogroupcanbesignificant,particularlyinrandomized orblindedtrials.

ClinicalTrialsinHematologicalDiseases:AVitalJourneyThroughthe

WhyPatientsStillChoosetoParticipate

Despite these challenges, many patients with hematological diseases willingly and courageouslyenterclinicaltrials.Why?

HopeforBetterOutcomes

Forpatientswhohaveexhaustedstandard therapiesorfaceaggressivedisease,clinical trialsmayoffertheonlypathforward.Evenin early-phasetrialswheretherapeuticbenefit isuncertain,patientsoftenfeelhopeful—if notforthemselves,thenforothers.

SenseofAltruism

Manypatientsreportastrongdesireto"give back."Knowingthattheirparticipationcould contribute to future therapies or lead to better understanding of their condition bringspurposeandmeaning.Thisaltruistic motivation is especially evident in rare disease communities where patient advocates work tirelessly to support research.

TrustinMedicalTeams

Therelationshipbetweenpatientsandtheir hematologists or oncologists plays a vital role. Trust in their care team’s recommendationcansignificantlyinfluence thedecisiontoenrollinatrial.Patientsare morelikelytoparticipatewhentheyfeeltheir valuesandpreferencesarerespected.

TheImportanceofIntegratingthePatient VoiceinTrialDesign

Forclinicaltrialstotrulyservethepatient population,theymustbedesignedwiththe patientinmind.

Patient-ReportedOutcomes(PROs)

Including PROs as endpoints ensures that trialsmeasurewhattrulymatterstopatients, suchasfatigue,pain,cognitivefunction,and emotional well-being, not just clinical markerslikewhitebloodcellcountsorblast percentages.

InclusiveTrialDesign

Diverse representation in trials is critical. Historically,racialminorities,women,older adults,andpeoplefromruralcommunities havebeenunderrepresentedinhematology trials This lack of diversity limits the generalizabilityoffindingsDesigningstudies with broader inclusion criteria and decentralizedmodels(e.g.,locallabtesting, telemedicine visits) can increase participation among underserved populations.

TransparencyandCommunication

Patientsneedclear,jargon-freeinformation about trial goals, risks, and potential benefits.Involvingpatientadvocatesearlyin trial design ensures that recruitment materials and consent documents are understandableandalignedwithpatients’ valuesandconcerns

Clinical

Hematology-SpecificConsiderations

Hematologicaldiseasesareoftensystemic, chronic,andcomplex.Thenatureofthese diseases introduces unique considerations forclinicaltrialparticipation.

TheRoleofPatientAdvocacy

Patient advocacy organizations play a criticalroleinbridgingthegapbetweenthe researchcommunityandthoselivingwith bloodcancersanddisorders.

ChronicityandTrialDuration

Conditions like chronic myeloid leukemia (CML) or polycythemia vera (PV) may requirelong-termparticipationintrialsthat trackmolecularmarkersovertime.Patients must weigh their ability to commit over extended periods and the lifestyle adjustmentsrequired.

RiskofTransformation

Someconditions,suchasMPNs,carrythe risk of transforming into acute leukemia

Clinical trials investigating preventative therapiesorbiomarkersfortransformation areessential,andpatientparticipationiskey toadvancingtheseefforts.

Immune-BasedTherapies

InnovationssuchasCART-celltherapyand bispecificT-cellengagersarerevolutionizing hematology.Thesetherapiesofteninvolve complex trial protocols, including lymphodepletion,hospitalization,andpostinfusion monitoring. Patients need comprehensiveeducationandpsychosocial supporttonavigatetheseintenseregimens

EducationandAwareness

Advocacygroupshelppatientsunderstand clinical trial options and their rights. They simplifyscientificinformationandtranslate it into accessible resources, increasing patients’confidenceinaskingquestionsand makinginformeddecisions.

SupportandNavigation

Manyorganizationsprovidetrialnavigators trained individuals who help patients identifysuitabletrials,understandeligibility, and manage logistics. These services are invaluable, particularly for those without accesstoamajorcancercenter.

ShapingResearchPriorities

Patient advocates are increasingly being invitedtositonresearchcommittees,ethics boards, and regulatory advisory panels. Their input helps ensure that research agendas align with real-world patient priorities,suchasimprovingdailyfunctionor reducingsymptomburden.

MovingTowardPatient-CentricClinicalResearch

Thefutureofclinicalresearchinhematologymustbeco-createdwithpatients.Severalshifts areunderwaytoenhancethepatientexperienceintrials: DecentralizedTrials:Enablingremotemonitoring,telehealthvisits,andat-homelabtesting. DigitalTools:Mobileappsandwearabledevicestotracksymptoms,sideeffects,andactivity levels

Real-WorldEvidence(RWE):Integratingclinicaltrialdatawithreal-worlddatatobetter understandpatienttrajectoriesandpreferences.

AdaptiveTrialDesigns:Allowingformodificationsintheprotocolbasedoninterimresults, increasingefficiencyandflexibility.

Shared

Decision-Making Models: Encouraging open dialogue between clinicians and patientsregardingtrialoptions,values,andrisks.

Clinicaltrialsinhematologicaldiseasesarenotjustaboutscientificadvancement theyare aboutpeople.Everynewtreatmentapprovedtodaystandsontheshouldersofpatientswho participatedinyesterday’strials.Fromhopeandempowermenttologisticalburdensand ethicaldilemmas,thepatientperspectiveaddsessentialrichnessandrealismtotheclinical researchlandscape.

Tohonourthiscontribution,healthcaresystems,researchers,andregulatorsmustwork togethertocreateatrulypatient-centricresearchecosystem—onewherepatientsarenot just subjects but partners. In doing so, we not only accelerate the discovery of new treatmentsbutalsoupholdthedignity,autonomy,andvoiceofeverypersonlivingwitha blooddisorder. Clinical Trials in Hematological Diseases: A Vital Journey Through the

Clinical Trials in Hematological Diseases: A Vital Journey Through the Patient’sLenscont'd

Canada stands at the forefront of hematological research, offering patients access to cutting-edgeclinicaltrialsthatareshapingthefutureofblooddisordertreatments.From common malignancies like leukemia and lymphoma to rare conditions such as myeloproliferativeneoplasms(MPNs),Canadianinstitutionsareactivelyengagedinstudies thataimtoimprovepatientoutcomesandqualityoflife.

TheCanadianClinicalTrialLandscape

Canada'srobusthealthcareinfrastructureandcommitmenttoresearchexcellencemakeit anidealenvironmentforconductingclinicaltrials.Thecountryboastsover40research hospitalsand15researchuniversities,facilitatingawiderangeofstudiesacrossvarious medicalfields.HealthCanada'sClinicalTrialsDatabaseprovidesacomprehensivelistingof authorizedphaseI,II,andIIIclinicaltrials,servingasavaluableresourceforpatientsand healthcareprofessionalsseekinginformationonongoingstudies.

HematologicalClinicalTrials:ASpectrumofOpportunities

Canadian research institutions are conducting numerous clinical trials targeting hematologicaldiseasesTheCanadianCancerTrialsGroup(CCTG),forinstance,isinvolved inseveralstudiesfocusingonconditionssuchasacutemyeloidleukemia(AML),chronic lymphocyticleukemia(CLL),Hodgkinlymphoma,andmultiplemyeloma.Thesetrialsexplore varioustreatmentmodalities,includingnoveldrugcombinationsandtargetedtherapies, aimingtoenhanceefficacyandreducesideeffects.

PatientParticipation:EmpoweringChoices

Participationinclinicaltrialsofferspatientsaccesstoinnovativetreatmentsthatmaynotbe available through standard care. Engaging in a trial can provide hope for improved outcomes and contribute to the advancement of medical knowledge. Patients are encouragedtodiscusstrialopportunitieswiththeirhealthcareprovidersandconsiderthe potentialbenefitsandrisksinvolved.

NavigatingClinicalTrialOptions

ForthoseinterestedinexploringclinicaltrialopportunitiesinCanada,severalresourcesare available:

HealthCanada'sClinicalTrialsDatabase:Offersinformationonauthorizedclinicaltrials acrossthecountry.

CanadianCancerTrials:Providesasearchabledatabaseofcancer-relatedclinicaltrials, includingthosefocusingonhematologicalmalignancies.

Canada's dedication to advancing hematological research through clinical trials presents significantopportunitiesforpatientsseekingalternativetreatmentoptions.Interferon-based therapiesandotherinnovativeapproachesarecontinuallybeingevaluated,offeringhope forimprovedmanagementofblooddisorders.Byparticipatinginclinicaltrials,patientsnot onlyaccesspotentialnewtherapiesbutalsocontributetothecollectiveefforttoenhance careforfuturegenerations.

Note: Patients should consult with their healthcare providers to determine eligibilityandsuitabilityforparticipationinclinicaltrials. ClinicalTrialsinHematologicalDiseasesinCanada:AdvancingCareThrough Innovationcont'd

Ifyouarelivingwithahematologicalconditionorcarefor someonewhois,considerexploringclinicaltrials.Talktoyour healthcareteam,reachouttoadvocacyorganizations and useplatformssuchasClinicalTrials.govorCanadianCancer Trialstolearnmore.Yourvoiceandexperiencematter—more thanyouknow.

ClinicalTrialSearch-Canada

HealthCanada'sClinicalTrialsDatabase-Website

HealthCanada,throughitsClinicalTrialsDatabase,isprovidingthepublicwithalistingof specificinformationrelatingtophaseI,II,andIIIclinicaltrialsinpatients.Thedatabaseis managedbyHealthCanadaandprovidesasourceofinformationaboutCanadianclinical trialsinvolvinghumanpharmaceuticalandbiologicaldrugs.

AccesstheClinicalTrialsDatabase

Patients can access the database to determine if a clinical trial has met the regulatory requirements.ThedatabasemayalsoassistCanadiansinfindingclinicaltrialsthatmightbe relevanttotheirmedicalcondition

The Clinical Trials Database is not a registry, and therefore, it does not contain comprehensiveinformationabouteachclinicaltrial.Tomaximizetheuseofthedatabase andavailableinformation,usersareadvisedtolinktoexternalresources,includingpublicly available registries, to obtain further information such as trial objectives and patient eligibility

Note,however,thatnotallclinicaltrialsarenecessarilyregisteredandthusfoundinthese registries.

HealthCanadacontinuestoencouragesponsorstoregistertheirclinicaltrialsinpublicly accessibleregistriessuchasClinicalTrialsgovandISRCTN

A Canadian-based registry for cancer trials is also available at Canadian Cancer Trials. Additionally,thesearchportalprovidedbytheWorldHealthOrganization(WHO)canbeused toaccessacentraldatabasethatcontainsinformationabouttrialsregisteredinseveral internationalregistries.

HealthCanadaisthefederalregulatorresponsibleforauthorizingtheimportationandsaleof drugsforthepurposeofclinicaltrials.Thisresponsibilityisfulfilledthroughthereviewof clinical trial applications (CTAs) for phase I, II, and III clinical trials, filed by clinical trial sponsors. One of the objectives of Health Canada's review is to ascertain that subjects participatinginthetrialwillnotbeexposedtounduerisks.

Every year, Health Canada authorizes approximately 900 clinical trials in patients The database lists trials that were authorized by Health Canada starting April 1, 2013 The databasewillbepopulatedwithinformationabouteachclinicaltrialafterHealthCanada issuesitsNo-ObjectionLetter(seeterminologysectionforadefinition).Thus,followingthe launch,thenumberofclinicaltrialsavailableinthedatabaseisexpectedtobesmall,butthe numberwillincreasewithtimeasthedatabaseispopulated.

InformationListedintheDatabase

ThedatabasewillprovidethefollowinginformationonclinicaltrialsforwhichaCTAhasbeen authorized:

ProtocolNumber; ProtocolTitle; DrugName; MedicalCondition; Studypopulation; DateofNoObjectionLetter; SponsorName; ControlNumber; StudyStartDate; StudyEndDate; TrialStatus.

Health Canada's Clinical Trials Database serves as an essential resource for patients, healthcareproviders,andresearchersbyofferingregulatoryinsightsintoauthorizedclinical trialsinCanada.Whilenotacomprehensiveregistry,thedatabasehelpsusersidentifytrials thathavemetHealthCanada’ssafetyandregulatorystandards,offeringaleveloftrustand transparencyforCanadiansexploringparticipationinclinicalresearch.

By supplementing searches with additional global registries such as ClinicalTrials.gov, ISRCTN,andtheCanadianCancerTrialsportal,individualscangainamorecomplete understandingoftrialoptionsandeligibility.Asthedatabasecontinuestoexpandovertime, it reinforces Health Canada's commitment to safeguarding patient well-being while promotingaccesstoinnovationandinformeddecision-makinginclinicaltrialparticipation

ThePowerofthePatientVoiceinClinicalTrials:ShapingtheFuture ofHematologicalResearch

ByCherylPetruk,MBA

In recent years, the p g subtle yet powerful transformation oneinwhichthepatientvoicehasemergednotasaperipheralconcern,but asacentral,drivingforceofresearchinnovationNowhereisthisshiftmorecriticalthanin hematologicaltrials,whererareandchronicconditionslikemyelofibrosis,leukemia,and myelodysplasticsyndromes(MDS)demandnuanced,patient-centeredapproaches The importanceofincorporatingthepatientvoiceinclinicaltrialstranscendsethicalobligation itisascientificandstrategicimperative.

Thisarticleexploreswhythepatientvoiceisvitalinclinicaltrialdesign,recruitment,retention, andoutcomes;howitenrichesthedataandimpactofhematologicalresearch;andwhat structural changes are necessary to embed patient perspectives at every level of the researchprocess.

RedefiningValue:PatientsasCo-CreatorsofScience

Traditionally, clinical trials have been designed from the top down, with protocol development, endpoints, and methodologies largely determined by pharmaceutical companies, clinicians, and regulatory agencies. While these stakeholders bring indispensableexpertise,theycannotreplicatethelivedexperienceofthepatient—thedayto-daynavigationofsymptoms,sideeffects,uncertainty,andhope.

Inhematology,wherepatientsoftenfacelongdiseasetrajectorieswithevolvingtreatments, theconceptofvaluemustreflectwhattrulymatterstopatients.Isa2-monthextensionoflife meaningfulifaccompaniedbyunrelentingfatigue?Doesa“manageable”sideeffectprofile stillfeelmanageabletosomeonebalancingwork,caregiving,andcancertreatment?

Embeddingthepatientvoiceensuresthatclinicaltrialoutcomesalignwithreal-worldneeds Thisincludesselectingendpointsthatreflectqualityoflife(QoL),functionalability,emotional well-being,andfinancialtoxicity—notjustsurvivalstatisticsorbiomarkershif

ThePowerofthePatientVoiceinClinicalTrialscont'd

ImprovingTrialDesignThroughLivedExperience

Patientengagementintrialdesignimprovesprotocolfeasibility, enhancesrelevance,andreducesprotocolamendments saving time,money,andethicalburdens.

Keycontributionspatientsmaketodesigninclude:

Endpoint Selection: Patients can advise on which outcomes should be prioritized, ensuring that efficacy is balanced with tolerability.

EligibilityCriteria:

Overlyrestrictivecriteriaoftenexcludediversepopulationsor thosewithco-morbidities.Patientscanhelpensurethattrials reflectthebroaderdiseasecommunity.

VisitSchedules&Burden:Patientscanhighlightlogisticaland emotional challenges in attending frequent visits, undergoing biopsies,orcompletinglengthyformsProtocolscanbeadjusted toeasethisburden

AstudybytheClinicalTrialsTransformationInitiative(CTTI) foundthatpatientengagementintheprotocoldesignphaseled to measurable improvements in recruitment speed and participantsatisfaction.

RepresentationMatters:EquityandInclusion

Forhematologicaltrialstoproducemeaningfulandgeneralizable results, they must include diverse patient populations racial, ethnic,gender,socioeconomic,andgeographic.Yetmanytrials continue to underrepresent communities most affected by certainbloodcancers.

Includingpatientadvocatesandgrassrootsorganizationsduring trialplanningcanrevealstructuralbarrierstoparticipation:lack of transportation, language limitations, mistrust of medical institutions,oralackofculturallycompetentcommunication. These insights are critical for designing inclusive recruitment strategiesandestablishingtrust.

Additionally, patient organizations can support communitybasedawarenesscampaignsandpeeroutreach,humanizingthe processandhelpingindividualsfeelempoweredtoaskabout clinicaltrialsascareoptions.

The Role of Patient Advocates: Trusted Intermediaries

Patientadvocatesarenotjustspokespeople they are translators, connectors, and educators. They play a critical role in buildingbridgesbetweenresearchersand communitiesby:

Explaining clinical trial concepts in accessiblelanguage

Supportinginformedconsentprocesses

Helpingpatientsunderstandtheirrights andoptions

Advocating for ongoing support throughoutparticipation

Theirpresencewithinadvisoryboards,ethics review panels, and steering committees ensuresthatthepatientlensisembedded throughoutthetriallifecycle.

In the hematological space, organizations suchastheLeukemia&LymphomaSociety, MyelomaCanada,andHealCanada’sMy Blood My Health program are pioneering advocacy-led initiatives that center the patient voice in research design and dissemination.

Real-World Data and Patient-Reported Outcomes

One of the most compelling reasons for prioritizing patient input is the growing relianceonReal-WorldEvidence(RWE)and Patient-Reported Outcomes (PROs) in regulatorydecision-making.

Patients can provide granular insights through PROs that reflect how treatments affect their daily lives pain levels, sleep quality, fatigue, anxiety, social functioning. Thesedatapointsareincreasinglyvaluedby regulatorslikeHealthCanada,theFDA,and EMA,andinfluencebothmarketapprovals andpost-marketingsurveillance.

Moreover,involvingpatientsinthecreation ofthesemeasuresensuresthetoolsreflect livedexperienceratherthanabstractclinical definitions.

Recruitment and Retention: Trust, Motivation,andMeaning

Recruitment remains one of the biggest challenges in clinical trials, with 80% of studiesfailingtomeetenrollmenttimelines. Retention is equally difficult, especially in trials requiring frequent travel, invasive procedures,orextendedcommitments

Patients who are engaged early in the process whounderstandthetrial’spurpose, who feel their contribution is meaningful, andwhotrusttheprocess—aremorelikelyto enrollandstay.

Storytelling, peer ambassadors, and community-based engagement strategies designed by and for patients significantly enhance recruitment. Moreover, when participants know their feedback will be valued, and that theywillreceivepost-trialupdates,adeepersenseofpartnershipem

ChangingtheCultureofResearch

To make patient voice integration sustainable,itmustbecomepartofresearch culture,notacheckbox.Thisincludes:

Institutionalizing Patient Engagement: Require patient input in grant applications,ethicsreviews,andprotocol approvals.

Compensating Patient Partners: Recognize patient expertise with fair compensationfortimeandknowledge.

TrainingResearchers:Provideeducation on how to work with patient partners respectfullyandeffectively.

FeedbackLoops:Shareresults,updates, andlearningswithtrialparticipantsand advocacygroups

Culturechangealsomeansacknowledging powerimbalancesandcreatingspacefor shared decision-making—a difficult but essentialshiftforacademia,industry,and regulatorsalike.

FromParticipationtoPartnership

The future of hematological research depends on a simple but transformative shift:treatingpatientsnotas“subjects”but aspartners.Thevalueofsuchpartnerships is already visible in trials that have embeddedadvocacyfromthestart.

Forexample,thedevelopmentofthe“Living withMPN”QoLtoolwasledbypatients,who definedwhatwell-beingmeanswhenliving withanincurablecondition.

The more we elevate patient perspectives, the more relevant, ethical, and successful ourtrialswillbecome

ElevatingtheHumanSideofScience

Clinical trials are not just scientific experiments they are human experiences. Every protocol is lived out by someone managing not just disease, but dignity, family,fear,andhope.

By integrating the patient voice, we ensure that hematological research is not only effective, but compassionate, inclusive, and ultimately transformative

This is not just good science it’s the right thingtodo.

CalltoAction:

If you ' re a patient, caregiver, or advocate, yourvoicematters.Getinvolvedby:

Joining advisory boards or patient councils

Asking your care team about clinical trials

Sharing your experience with advocacy organizations

Participatinginsurveysorfocusgroups

Supporting peers navigating the clinical trialjourney

Together, we can reshape the future of bloodcancerresearch onevoiceatatime.

HealCanadaandPatADVHubintheUSAhaveembarkedonacollaborativejourney,aiming to revolutionize the realm of patient advocacy across North America. This pioneering partnership brings together two influential organizations from neighbouring countries, combiningtheirextensiveexpertiseandresources

The objective is to expand and enhance the access to critical information for patient advocates, ensuring that individuals across the continent receive the best possible support andguidanceintheirhealthcarejourneys.

By bridging the gap between Canadian and American healthcare advocacy, this alliance promises to foster a more informed, empowered, and connected community of patient advocates, significantly contributing to the improvement of healthcare experiences for countlessindividuals.

patadvhub@gmail.com

www.patadvhub.org

HematolgyAdvocacy Groups

ListofHematologyAdvocacyGroups-Canada

National&RegionalHematologyAdvocacy Organizations

NetworkofRareBloodDisorderOrganizations(NRBDO)

Apan-Canadiancoalitionrepresentingpatientswith rareblooddisorderssuchashemophilia,thalassemia, aplasticanemia,andvonWillebranddisease.NRBDO focusesonadvocacy,healthcareaccess,andbest practicesincaredelivery.

CanadianHemophiliaSociety(CHS)

Foundedin1953,CHSsupportsindividualswithinherited bleedingdisordersthrougheducation,research,and advocacy.Itoperateschaptersineveryprovince

AplasticAnemia&MyelodysplasiaAssociationof Canada(AAMAC)

Provideseducation,peersupport,andresearchfunding forCanadianslivingwithaplasticanemia, myelodysplasticsyndromes(MDS),andparoxysmal nocturnalhemoglobinuria(PNH).Offerslocalsupport meetingsandwebinars.

Leukemia&LymphomaSocietyofCanada(LLSC)

Anationalcharitydedicatedtocuringleukemia, lymphoma,Hodgkin'sdisease,andmyeloma.LLSC providespatientsupportservices,education,andfunds researchacrossCanada.

LymphomaCanada

Focusesoneducation,support,andadvocacyfor lymphomapatients.Offersvirtualandin-person supportgroupsacrossprovinces,includingOntario.

ListofHematologyAdvocacyGroups-Canada

MyelomaCanada

Theonlynationalorganizationexclusivelyfocusedon multiplemyeloma.Provideseducationalresources, promotesclinicalresearch,andadvocatesforpatient accesstonewtherapies.

CLLCanada

AnationaladvocacygroupsupportingCanadians affectedbyChronicLymphocyticLeukemia(CLL)and SmallLymphocyticLymphoma(SLL).Offerseducation andworkstoimprovetreatmentaccess

Alpha-1Canada

Providespeer-to-peersupportanddisease managementservicesforCanadiansdiagnosedwith Alpha-1AntitrypsinDeficiency.Engagesinnationaland internationaladvocacyefforts.

aHUSCanada

AdvocatesforindividualswithatypicalHemolytic UremicSyndrome(aHUS),focusingoneducation, support,andaccesstotreatment.

CanadianHemochromatosisSociety

FoundedbyMarieWarder,thisorganizationraises awarenessandprovidessupportforthoseaffectedby hereditaryhemochromatosis.Offerseducational materialsandadvocacy.

TheCanadianCMLNetwork isacommunityofpeoplelivingwithChronicMyeloid Leukemia Wearededicatedtoprovidingemotional, socialandeducationalsupporttopeoplelivingwith CMLandtheirfamilies.TheCanadianCMLNetworkworks withpatientsandhealthcareprovidersfromallacross Canada,andisfocusedonbuildingCMLpatientgroups nationally

CanadianMPN NetworkPatientAdvocacyGroup

AFormalCanadiannetworkofpatientsandcaregivers Providesaplatformforsharingbestpracticesand connectingwithlocalsupportgroups.

KnowyourBlood

AFormalCanadianorganizationdedicatedtothe Black/Caribbeancommunity.Providesaplatformfor sharingandconnectingforspecificdiseasestothis community

CLL/SLLInformation&Support(Canada)

ACanadiancommunityforindividualslivingwithChronicLymphocyticLeukemia(CLL)and SmallLymphocyticLymphoma(SLL),theirfamilies,andprofessionals.Membersshare experiences,askquestions,andoffermutualsupport.Facebook CMLFriendsofCanada

AgroupforCanadianslivingwithorsupportingsomeonewithChronicMyeloidLeukemia (CML).Itservesasaspaceforsharingexperiences,information,andsupportamong members.

LymphomaCanada–FacebookPage

Whilenotagroup,LymphomaCanada'sFacebookpageoffersresources,updates,and informationonvirtualsupportgroups,includingmonthlysessionsco-hostedwithWellspring forlymphomaandCLLpatients.LymphomaCanada

ListofHematologyAdvocacyGroups-USA

Leukemia&LymphomaSociety(LLS)

LLSisthelargestnonprofitdedicatedtocuringleukemia, lymphoma,Hodgkin'sdisease,andmyeloma.Itprovides patientsupport,fundsresearch,andadvocatesfor policiestoensureaccesstoquality,affordablecare.

NationalBleedingDisordersFoundation(NBDF)

FormerlytheNationalHemophiliaFoundation,NBDF focusesonawareness,care,andtreatmentof inheritablebloodandbleedingdisorderslikehemophilia andvonWillebranddisease

InternationalMyelomaFoundation(IMF)

IMFisdedicatedtoimprovingthequalityoflifefor myelomapatientsthroughresearch,education, support,andadvocacy.Itoffersresourcesforpatients, caregivers,andhealthcareprofessionals

LeukemiaResearchFoundation

Thisfoundation'smissionistocureleukemiabyfunding researchandsupportingpatientsandfamilies.It provideseducationalresourcesandfinancial assistance

LymphomaResearchFoundation

Asthenation'slargestlymphoma-focusedhealth organization,itisdevotedtofundinglymphoma researchandprovidingpatientswitheducationand supportservices

CancerCare

CancerCareoffersfree,professionalsupportservicesfor peopleaffectedbycancer,includingcounselling, supportgroups,educationalworkshops,publications, andfinancialassistance

ListofHematologyAdvocacyGroups-USA

NationalMarrowDonorProgram(NMDP)

NMDPmanagestheBeTheMatchRegistry,facilitating bonemarrowandumbilicalcordbloodtransplantsfor patientswithlife-threateningbloodcancers

AplasticAnemiaandMDSInternationalFoundation (AAMDSIF)

AAMDSIFprovidessupportandeducationforpatients withaplasticanemia,myelodysplasticsyndromes (MDS),andrelatedbonemarrowfailurediseases.

MDSFoundation

TheMDSFoundationofferssupportandresourcesfor patientswithmyelodysplasticsyndromes,including informationonsupportgroupsandtreatmentoptions.

InternationalWaldenstrom'sMacroglobulinemia Foundation

Thisfoundationprovidessupportandeducationfor patientswithWaldenströmmacroglobulinemia,arare typeofnon-Hodgkinlymphoma,andfundsresearchfor improvedtreatments.

Children'sCancerandBloodFoundation(CCBF)

CCBFisthefirstandlargestcharitableorganizationin theU.S.dedicatedtosupportingthecareofchildren withcancerandblooddiseases

MPNAdvocacy&EducationInternational

Thisorganizationofferseducationalprograms,patient andcaregiverconferences,andresourcestailoredto MPNpatients.Theyaimtoempowerpatientsthrough knowledgeandsupport.

MPNEducationFoundation

Thefoundationprovidesinformationandsupportfor MPNpatients,includingtheMPN-NETonlinesupport group,whichfacilitatesdiscussionsamongpatients, caregivers,andhealthcareprofessionals.

ListofHematologyAdvocacyGroups-Global

TheAcuteLeukemiaAdvocatesNetwork(ALAN)

Aglobalpatientadvocacyorganizationdedicatedto improvingthelivesofpeopleaffectedbyacute leukemias.Byconnectingpatients,caregivers,and advocates,ALANpromotesawareness,facilitates accesstoinformation,andsupportsresearchtoensure patientvoicesshapeleukemiacareandpolicy worldwide.

CMLAdvocatesNetwork

AninformalglobalnetworkmoderatedbyChronic MyeloidLeukemia(CML)patientsandcaregivers. Providesaplatformforsharingbestpracticesand connectingwithnationalsupportgroups.

TheGlobalMPNScientificFoundation(GlobalMPNSF)

Anon-profitorganizationcommittedtoimprovingthe livesofindividualsaffectedbymyeloproliferative neoplasms(MPNs),agroupofrarebloodcancers Througheducation,advocacy,andresearchsupport, GlobalMPNSFraisesawareness,connectspatientswith specialists,andpromotesadvancementsintreatment andcare.

ListofHematologyAdvocacyGroups-Online

MPN-NETOnlineSupportGroup

Hosted by the MPN Education Foundation, MPN-NET is an email-based discussion group wherepatientsandcaregiversshareexperiences,information,andsupportrelatedtoMPNs.

FacebookGroups

SeveralFacebookgroupsofferinformalsupportforMPNpatients: MyeloproliferativeNeoplasms(MPN)SupportGroup: A global community where members discussvariousMPN-relatedtopics.

PolycythemiaVera(PV)SupportGroup: Focused on individuals diagnosed with PV, sharing experiencesandcopingstrategies.

EssentialThrombocythemia(ET)SupportGroup: A space for those with ET to connect and supporteachother.

Myelofibrosis (MF) Support Group: Dedicated to discussions around living with MF, treatments,andresearchupdates.

References

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MayoClinic.(2023).CBC(completebloodcount).RetrievedApril30,2025,from https://www.mayoclinic.org/tests-procedures/complete-blood-count/about/pac20384919

LabTestsOnline.(2023).Understandingyourcompletebloodcount.AmericanAssociation forClinicalChemistry.RetrievedApril30,2025,from https://labtestsonline.org/tests/complete-blood-count-cbc Leukemia&LymphomaSociety.(2023).Bloodandbonemarrowtests.RetrievedApril30, 2025,fromhttps://www.lls.org/treatment/blood-and-bone-marrow-tests

CanadianCancerSociety (2022) Bonemarrowtests RetrievedApril30,2025,from https://cancer.ca/en/cancer-information/diagnosis-and-treatment/tests-andprocedures/bone-marrow-tests

Nielsen-Bohlman,L.,Panzer,A.M.,&Kindig,D.A.(Eds.).(2004).Healthliteracy:A prescriptiontoendconfusion.InstituteofMedicine.TheNationalAcademiesPress. https://doi.org/10.17226/10883

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Weiss,B.D.(2007).Healthliteracyandpatientsafety:Helppatientsunderstand(2nded.). AmericanMedicalAssociationFoundation. HealCanada.(2025).MyBloodMyHealth:Patienteducationtoolsforunderstanding hematologicaldiseases Retrievedfromhttps://wwwhealcanadaca CanadianAgencyforDrugsandTechnologiesinHealth(CADTH).(2023).Real-World EvidenceFramework.

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CanadianOrganizationforRareDisorders(CORD).(2023).Rarediseasestrategyfor Canada:2023policyupdate https://wwwraredisordersca

CanadianPartnershipAgainstCancer.(2022).Equityincancercare:Anationalstrategy toimproveoutcomes.https://www.partnershipagainstcancer.ca

CentersforMedicare&MedicaidServices.(2021).Coveragewithevidencedevelopment: Policyoverview.https://www.cms.gov

EuropeanCommission.(2023).Rarediseases:Policyanddata.

https://healtheceuropaeu/non-communicable-diseases/rare-diseases en FoodandDrugAdministration.(2022).FrameworkforFDA’sreal-worldevidenceprogram. https://www.fda.gov/media/120060/download

HealCanada.(2024).MPNPatientSurvey:Livedexperiences,diagnosticjourneys,and accesstocare.Internalreport.

HealthCanada.(2023).ModernizationoftheHealthCanadaSpecialAccessProgramand prioritydrugapprovals https://wwwcanadaca/en/health-canada/services/drugshealth-products/special-access.html

Leukemia&LymphomaSociety.(2023).Policypriorities:Access,equity,andinnovationin bloodcancercare.https://www.lls.org/advocate

NationalOrganizationforRareDisorders.(2022).Legislativewinsinraredisease advocacy:Anannualreview.https://rarediseases.org

OfficeoftheAuditorGeneralofCanada (2021) Accesstohealthservicesforremoteand Indigenouscommunities.https://www.oag-bvg.gc.ca

Pan-CanadianPharmaceuticalAlliance.(2022).Drugnegotiationandreimbursement framework.https://www.pcpacanada.ca

PublicHealthAgencyofCanada.(2023).Canada’snationalstrategyforrarediseases–Buildingpathwaystobettercare.https://www.canada.ca/en/publichealth/services/publications/diseases-conditions/national-strategy-rare-diseaseshtml UKParliament.(2018).All-PartyParliamentaryGrouponBloodCancer:Inquiryintoblood cancercareintheNHS.https://www.appgbloodcancer.org.uk

UnitedStatesCongress.(2016).21stCenturyCuresAct.

https://www.congress.gov/bill/114th-congress/house-bill/34

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HealthPolicyPartnership.(2024).Patientadvocates:vitalvoicesinshapinghealthpolicy andcare https://wwwhealthpolicypartnershipcom/patient-advocates-vital-voices-inshaping-health-policy-and-care/

VerywellHealth.(2024).HowSelf-AdvocacyHelpedMeNavigateCrohn'sDiseaseand HealthcareBias.https://www.verywellhealth.com/self-advocacy-to-navigate-crohns8730188

Vogue.(2020).SuperbloomIsaNewOnlineCommunityforWomenWithChronicIllness. https://wwwvoguecom/article/superbloom-is-a-new-online-community-for-womenwith-chronic-illness

WallStreetJournal.(2025).MedicareCoverageFuelsSolace’s$60MillionSeriesB. https://www.wsj.com/articles/medicare-coverage-fuels-solaces-60-million-series-b28eb41b1

Wikipedia.(2024).Patientadvocacy.https://en.wikipedia.org/wiki/Patient advocacy Wikipedia (2025) ChoosingWiselyCanada https://en.wikipedia.org/wiki/Choosing Wisely Canada Wikipedia.(2025).PANFoundation.https://en.wikipedia.org/wiki/PAN Foundation Wikipedia.(2024).Healthadvocacy.https://en.wikipedia.org/wiki/Health_advocacy CanadianCancerTrials.(2023).Findaclinicaltrial.https://www.canadiancancertrials.ca Leukemia&LymphomaSociety.(2023).Understandingclinicaltrials. https://wwwllsorg/treatment/clinical-trials

ASHClinicalNews.(2023).“PatientEngagementinHematologyResearch.” MayoClinic.(2022).UnderstandingthePhasesofClinicalTrials. NationalInstitutesofHealth.(2023).ClinicalTrials.gov.https://clinicaltrials.gov AmericanSocietyofClinicalOncology.(2022).“ImprovingClinicalTrialDiversity.” HealthCanada'sClinicalTrialsDatabase

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Alliances

Alliances

Partners

MyBlood,MyHealthTeam

CherylPetruk,MBAB.Mgt.

CherylA Petrukisamultifacetedprofessionalwhosecareerspansacrosspatient advocacy,business,andpost-secondaryeducation,showcasingherdedicationto makingasignificantimpactineachoftheseareas

Cheryl'stransitionintopatientadvocacywasdrivenbyapassionfromherfamily circumstancesandadeepcommitmenttoensuringpatients'rightsandaccessto care.Cherylhasworkedtirelesslytobridgethegapbetweenthehealthcaresystem, patients,andpharmastakeholders,ensuringthatpatients'voicesareheardandtheir needsaremet.HerworkinvolvescollaboratingwithStakeholdersandPatientAdvocacy Organizations,lobbyingforpatientcentricity,andprovidingpatientsupportand guidance.Cheryl'sempatheticapproachanddedicationtoadvocacyhavemadehera respectedfigureinthisfield,admiredbypatients,healthcareprofessionals,andfellow advocates.

CherylalsoleadsandistheleadfacultymemberatCACHEducation,PatientAdvocacy Training.CherylisacertifiedgreenbeltinVBHC,acertifiedTrainerinVBHC,andisaDBA Student

HealCanadaanditssignatureinitiative,MyBloodMyHealth,collaboratewithadiversearray ofconsultantswhobringspecializedexpertisetosupportourmissionofadvancingpatient advocacy,education,andengagementinhematologicalhealth.Theseconsultantsinclude healthcareprofessionals,patientengagementstrategists,medicalwriters,clinicalresearch advisors,digitalhealthexperts,legalandregulatoryspecialists,andcommunicationsand mediaconsultants.Eachcontributesuniquely—whetherit'scraftingpatient-centered educationalcontent,guidingethicalandregulatorycomplianceforclinicaloutreach, developingdigitaltoolsforpatientengagement,orensuringthatadvocacymessaging resonatesacrossplatforms.Thismultidisciplinaryapproachensuresourprogramsare informed,inclusive,andimpactful,amplifyingthepatientvoicewhiledrivingmeaningful changeinhealthcare.

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Thispublicationisintendedforinformationalandeducationalpurposesonly.Noportionof thismagazinemaybecopied,republished,orsharedwithoutexpresswrittenpermission, exceptasallowedunderfairusefornon-commercialeducationalpurposes Forinquiriesorpermissions,contact:admin@healcanadaorg MyBloodMyHealthisapatient-focusedinitiativeofHealCanada,dedicatedtoraising awarenessofbloodcancersandsupportingthepatientvoice.