Evidence / What makes health data worth more
What makes health data worth more
Published evidence on what makes health data more valuable to research: rarity, linked records, depth and time, each with its source and its own words.
14 figures, last read 7 Nov 2026. Each row opens the figure with its source and its own words.
What makes health data worth more (14)
Premium on research incentives for physicians, pharmacists and clinical specialists over general professional ranges40 to 80 percentCleverX, Research incentive rates by seniority (benchmarks) · checkedCPRD single-study fee for cancer registration plus systemic therapy and radiotherapy linked data against cancer registration data alone£4,400 and £16,300CPRD, pricing (prices applicable from April 2023, excluding VAT; read from an Internet Archive copy)NHS patient record linked with genomic and phenotypic data against EHR/EMR data alonebetween £1000–5000 per record when combined with genomic and phenotypic dataEY, How we can place a value on health care data (19 July 2019) · checkedCompany-reported per-patient cost in advanced orphan trials against the average Phase 3 per-patient cost$137,000 to over $5MM against $42,000Health Advances, Orphan Drug Development: What are the Real Costs? (10 April 2019; read from an Internet Archive copy)Stated price for patient-generated health data, pharmaceutical and device companies against universities237.30€/month and 145.66€/monthHeidel, Hagist and Schlereth, PLOS ONE 2021, Pricing through health apps generated data: digital dividend as a discrete choice experiment (Germany) · checkedLunaDNA share value of a whole genome against consumer genotyping data300 shares and 50 sharesThinkAdvisor, Share your DNA, get shares (5 October 2018; read from an Internet Archive copy)LunaDNA shares for 20 years of a person's historical health records against one year of them2 and 40LunaDNA, LLC, Regulation A offering circular filed with the SEC under Rule 253(g)(2), December 2021 (shares per data type table) · checkedLunaDNA shares for four tumor whole-genome time points from the same person in a year against a single time point300 and 1,200LunaDNA, LLC, Regulation A offering circular filed with the SEC under Rule 253(g)(2), December 2021 (shares per data type table) · checkedLunaDNA's value for two years of one person's monthly 10-minute health surveys against one consumer genotype file (longitudinal self-reported answers)97 %LunaDNA, LLC, Regulation A offering circular filed with the SEC under Rule 253(g)(2), December 2021 (Value of Consideration, value relative to the GT file) · checkedAdvanced expert patient or caregiver against individual patient or caregiver, fair market value per hour$110 - $235 and $55 - $120National Health Council, Fair Market Value Hourly Rate Methodology (updated June 2024) · checkedPer-patient trial cost of orphan drugs against non-orphan drugs, Phase 3 (EvaluatePharma data)2.5:1Jayasundara et al., Orphanet Journal of Rare Diseases 2019, Estimating the clinical cost of drug development for orphan versus non-orphan drugs · checkedCurated unstructured EHR data licence against claims data licence, per therapeutic area per year (price ladder)$100k–300k per therapeutic area (claims) and $3–5 million per TA (curated EHR)Dagenais et al., Clinical Pharmacology & Therapeutics 2022, Use of Real-World Evidence to Drive Drug Development Strategy and Inform Clinical Trial Design · checkedStructured EHR data licence against claims data licence, per therapeutic area per year (price ladder)$100k–300k per therapeutic area (claims) and $1–3 million per TA (structured EHR)Dagenais et al., Clinical Pharmacology & Therapeutics 2022, Use of Real-World Evidence to Drive Drug Development Strategy and Inform Clinical Trial Design · checkedUK Biobank Tier 3 (adds imaging and sequence data) against Tier 1 (questionnaires, measurements, linked health data), first three years£3,000 and £9,000UK Biobank, Fees (read from an Internet Archive copy, 2025; fees exclude VAT)